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Community > Expert Q & A > Fibromyalgia > Difference Between Fibromyalgia and Polymyalgia
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Difference Between Fibromyalgia and Polymyalgia

Q: I’ve been diagnosed with polymyalgia. What is the distinction between polymyalgia and fibromyalgia? What is the treatment for polymyalgia? 

A: I can certainly understand the confusion between fibromyalgia and polymyalgia; the names and, to an extent, the symptoms of both conditions are similar.

The word myalgia means pain within the muscles. Both fibromyalgia and polymyalgia are characterized by muscle pain, but many other aspects of the two conditions differ.

Polymyalgia, or polymyalgia rheumatica, is an inflammatory disease of muscle. The cause is uncertain but it is believed to be an autoimmune disease in which the body’s own immune system attacks the connective tissues. The primary symptoms are severe stiffness and pain in the muscles of the neck, shoulder and hip areas. People with this condition also may have flulike symptoms, including fever, weakness and weight loss, and approximately 15 percent develop a potentially dangerous condition called giant cell arteritis – an inflammation of the arteries that supply the head.

Fibromyalgia is not an inflammatory condition. It is caused by abnormal sensory processing in the central nervous system. People with fibromyalgia may be extremely sensitive to pain and other unpleasant sensations. To be diagnosed with fibromyalgia, one must experience pain on both sides of the body and in both the upper and lower half of the body. They are also typically tender points throughout their body. Other common symptoms of fibromyalgia include fatigue, difficulty sleeping and concentrating, irritable bowel syndrome and headaches.

Both fibromyalgia and polymyalgia are more common in women than men. Fibromyalgia can occur at any age, but polymyalgia rarely occurs before age 50. The average age of onset is 70. And whereas fibromyalgia is chronic, often lasting a lifetime, polymyalgia usually resolves itself within two years.

Treatment differs, too. Fibromyalgia is treated with exercise, relaxation techniques, analgesic medications and antidepressants to relieve pain and promote sleep. Treatment for polymyalgia is targeted at relieving inflammation. For some people, daily doses of NSAIDs, such as ibuprofen (Advil, Motrin), are sufficient, but more often corticosteroids, such as prednisone, are required to control inflammation.

Although your polymyalgia will eventually go away completely, it’s important that you be mindful – both now and after your disease resolves – of symptoms such as headaches and blurred vision, which could mean giant cell arteritis. If you develop arteritis, high doses of corticosteroids may be necessary to control the condition and prevent vision loss.

Daniel Clauw, MD, Rheumatologist

Sue P
24 Jan 2012, 11:32
Was diagnosed with PMR and Temporal Arteritis in Jan 2010 following surgery for an abdominal mass (benign) Biopsy of artery in temple was benign, but sed rate a CPR were high, so I started on 60 mg of Prednisone. Have worked my way down to 3mg Pred, but PMR has flared up, but pain is only on right side this time. PCP increased Pred up to 15mg then 20mg. Pain is better - have been able to discontinue use of Extra Strength Tylenol, but generally feel like crap all the time. Two friends who were also diagnosed with PMR just before me are now off Prednisone and having no PMR symptoms. Is there any hope of getting off Pred and feeling good again?
Sandy
18 Jan 2012, 11:05
I was diagnosed with PMR in 1998(I was 48). I went to bed just fine and in the morning I could not turn over or get out of bed without help. Getting dressed was a major ordeal. My GP diagnosed me with PMR and initially put me on 10mg of prednisone which worked for a few days then the symptoms came right back. The dosage was increased to 15 mg which worked for a few days then the symptoms came back. Dosage was increased to 20 mg with the same result. Since the prednisone did not continue to treat my symptoms my GP decided that I did not have PMR and took me off all prednisone. Needless to say, I was desperate. I could not function without excruciating pain. I finally got into a rheumatologist who also diagnosed me with PMR and who put me on 20 mgs of Methylprednisolone. I don't know what the difference is but the methylprednisolone worked for me. My PMR has not gone away. I only take 2 mgs of the prednisone now to keep symptom free but when I try to taper down the symptoms come right back which usually require me to increase the dosage over the 2mgs (usually to 5 mgs for a while) to be symptom free. Its been 12 years now and I have terrible side affects from the prednisone. My skin is very thin (like papaer) and I have terrible bruising on the back of my hands that never goes away. I have at times been hospitalized for the skin tears and have had to undergo surgery to close one tear after 3 months of it not healing. My younger brother was diagnosed with it before I was (he was only 44). His has gone away and he is sypmtom free. At 61 years old, I have the skin of someone over 80 on my arms and legs but I am able to function. I guess it's a quality of life matter - if I did not have the methylprednisolone I would not be able to function and live a normal life. I guess it is what it is.
Adrienne
16 Dec 2011, 18:32
Read all your stories and sorry to hear about all your pain and medical treatment nightmares.

I developed polymyalgia and fibromyalgia in 2006 -- I also had a car accident a year before -- which may have set it off.

I was in such pain I couldn't lift my arms or drive a car for more than 15 mins. without total pain and fatigue.

I went away that winter to North Myrtle Beach, SC and heard they had a "therapy pool"(heated shallow swimming pool)at a new aquatic center, where they instructed individuals with arthritis and other joint/muscular problems in various exercises. After participating in these classes for two weeks I began to experience a lifting of my pain and within a short time after that felt wonderful. I continued the exercises (45 min.) and followed with some leisurely swimming for approx. 1 hour total everyother day and have remained pain free every since (found a heated pool in my hometown when I returned).

I totally believe the nonstenuous movements in the moist heat was the cure for my myalgias and recommend, if you can find a facility providing this, trying this treatment.

I wish you all a pain free life!!!

Adrienne
Bea
12 Dec 2011, 16:59
I GOT PR WHEN I WAS 55 YRS. I had it for 5 yrs. Predasione was prescript and the weight I gained was terrible. I thought I would never get it back, surprise! I got it again two times. I live with it, but will never take that medication again. I will survive.Good all.
Hernan
02 Dec 2011, 15:03
Has anybody tried myofascial release?
gsb
29 Nov 2011, 16:11
I want to know if,PMR can re-occure
Susie-Q
11 Nov 2011, 21:06
I was rear-ended in a car accident on 4/30/10. I was shocked when the next day I developed pain in my neck, shoulders and lower back. I went to physical therapy for 7 months before giving it up because it didn't seem to help. Then I tried accupuncture for several months with a varying degree of success. I finally got Botox in my shoulders and uppper back, and that has helped quite a bit. In mid-October, I got an injection into my hip for debilitating pain. I started physical therapy again and it just seemed to make everything worse. In fact, it undid the benefit I had gotten from the steroid shot into the hip.

Last March (2011) I told my primary care doctor that I was very fatigued. He thought it could be SAD because the weather was very gray and cloudy and we had just returned from several months in sunny Florida. At the beginning of October, a doctor of physical medicine whom I had been seeing did the Botox injections in my shoulders and upper back. I got quite a bit of relief from that, but the pain has not gone away completely. When I saw my primary recently, I told him I was still tired, had quite a bit of pain in my lower back, hips, neck and shoulders. He checked the various pain points for fibromyalgia and diagnosed me with that. He gave me Nortriptylene (sp?) which didn't do much for the pain, but gave me a very dry mouth and constipation. He sent me for blood work and my SED rate came back at 58. He told me to see a rheumatologist. I saw the Rheum Doctor yesterday who almost immediately diagnosed me with PMR. He told me that he would prescribe prednisone for me, but I refused it. I don't want the side effects from the steroids. He said that in his 25 years, he's had about 10 patients who didn't want to take steroids. He felt that the disease did not last any longer, but the pain would be more intense. I am using Lidoderm patches for spot relief and they get me through the day. Even with them I still have pain (it's more bearable with them than without) and a considerable amount of fatigue. He told me what symptoms to watch out for in case I develop GCA. He said if that happened I would have to go on steroids. I'll cross that bridge when I come to it.

Has anyone else on this site refused steroids and what was the outcome? I really don't want to take them. I'm a diabetic who is controlled by diet and exercise, and if I take the steroids, I will probably have to go back to diabetes meds which always caused my blood sugar level to crash. I would also need other things to prevent osteoporosis (I'm almost 63), and of course, I would probably gain weight. I had a gastric bypass in 2004 and lost 140 pounds and refuse to gain weight back.

I'm interested in any feedback. Thanks.
Carmen
21 Sep 2011, 12:44
I have had fybromalgia for over 10 years and about 4 years ago I was diagnosed with PMR my sed rate was 175,was anemic, too many white cells and my bone marrow was not creating red cells, because I had breast cancer my oncologist was concerned that I could get a secondary cancer of the blood.
I have low tolerance for medications.
The pain and stiffness were horrible. My liver markers would go high and next time were normal, a lot of false positives with tests.
I am in the medical field and I thought I got PMR as many had after an ilness like bronquitis, I had that, my body started to build white cells to defend my body and this was the origen of my PMR.
After a year and half, I traveled to the Andes Mountains, the city is over 12.000 feet and I knew I had to produce red cells to oxiginate my body.
I stayed one month, I was not any longer anemic, my red cells were normal
By the time I came back my SED was 60, now it goes down to 35 or back to 60.
I think I almost cured, my rheumatologist agrees.
Horrible illness.
KaCee Alexander
02 Sep 2011, 17:00


In reference to Sharons question,,does
leg cramps come with pmr?...Yes,,,the
pred. depletes your potassium and that
causes the cramps,,I am still having them
but not if I remember to drink my small
can of low sodium v/8 Juice daily, they
do not bother me. The v8 has 700mg of
potassium in the 5.5 oz. can. It stops
them. I had not drank my v8 in a week,
I woke up with leg sore hurt to walk so
I knew I'd had a cramp while sleeping.
Must have been a doosie..Does anyone
know of a rheumatologist in the states
that take pain into consideration when
lowering prednisone,,,I'm having gca
symptoms and because sed is not high,
they just keep lowering it,,,If the drs.
only knew what the pain is like. Everyone
have a painfree holiday.
KaCee
Sharon
22 Aug 2011, 08:37
Does anyone have "charlie horses" with PMR? I was diagnose 2 months ago. I am drinking tonic water at night to try to prevent the charlie horses in my calves, feet, toes. I am still very sore from the charlie horse that woke me up last night.
lindy
28 May 2011, 19:18
How do you keep adding? mine just quit having space. anyway After aa few days on prednisone life was much better. My Dr also referred me to a rheumatologist. Both Drs I liked very much. My rhuem told me that he suspected also had fibro. Going back I think about times in the last 10 orso years when I would do yard work all summer long. I would think things like.."why am I so sore? if I was younger(I'm 58) I would think I had MS or something. Thoughts like "why do I do the same thing day after day and still feel like I got hit by a truck?I realize now that It was probably fibro!! The worst fight Ive had was the day to shop for tahe food for my daughter in laws reception and I told her I wasn't doing the shopping but I had made lists. At that time there was no way to say,,"I can't walk thru a costco!Let me tell you she still resents me for that one! I have been on prednisone eversince (for PMR) ups and downs.. In the last year or so 5-7.5or 10. I have had many flares! Until Jan of 2011 I had insurance in one health care system and had worked totally hands on with these guys and I knew they understood where i was. I had antidepressents, pain pills, muscle relaxers ,prednisone and plaquenil by the way to supplement my prednisone. I never was a pain pill freak but my drs and I agreed on bad days if I started with a pain pill and a muscle relaxer, it allowed me to move enough to move to work out the pain and get ti to a tolerable level. IN jan of 2011 my husbands company changed insurance groups. my life has been handled so differently! By the way I should say, I also have restless leg syn, varicose veins, high blood pressure, hammer toes and feet problems,irritable bowel syn and right nNow I have an infected mouth from dry mouth from medication, I have a prescription for mouth rinse to heal it and now i have more sores than i started with. Next week I go to be fitted with my CPAP that will help the sleep apnea that i just was diagnosed with. My new health system doesnot believe in pain meds for fibro and ignored the Pmr. Most people are closer to 70. i left feeling like a drug addict he thought he was going to reform a drug addict whether I liked it or not. changed primary, this one climbs mts and told me watertherapy is for sissys and i should join a club and do twice as much as I thought I could. he just shook his head in disgust when I tod him I wasn't sure I could make it into a club! trying to cut this short about 3 or 4 weeks ago my hips started hurting more (oh yeah, have gluteal? tendenitois.. had a cortisone shot amonth ago that didn't help) and for 2 weeks my shoulder , hips and everything I own, hurts so muchthat i cant walk to the bathroom, stand for over 2 min,on and on. bottom line went to the rheum and going to start on Enbrel shots this week. all I know is I am ready to go for assisted suicide if this doesn't work! I hope i didn't bore you but I've never wrote on a blog before. got my grandkids today 6&8 and they are perfect thank god. I just fell trying to get to the walker I have had to use to get anywhere this weekend!But dont think I' never do anything I blew my driveway clean today on my walker. with the help of a chair! thanks for letting me air my pain!
lindy
28 May 2011, 18:34
I have been on this down hill slide for n jan of 2006 I was in an auto wreck,(which I blame for my"onset" and ended up in physical therapy for a pain in a specific part of my lower back. The pain was finally starting to improve and get better when all of a sudden everything hurt in my back and shoulders> when the therapist started putting on alittle bit more agressive excersises i could not even begin to consider I had a follow up with my primary. told him i couldn't move and he told me he thought I probably had PMR and put me on prednisone.
Pat
27 May 2011, 13:17
I was diagnosed in Aug of 2009...started on 15 mg of prednisone which stopped the pain immediately. Now, almost 2 years later I am down to 2 mg of prednisone with a bit of pain/stiffness in my shoulders/neck area and in my legs if I sit too long. I was taking an ibuprofen each day but have stopped as I had some gastritis and don't need stomach problems on top of this. It is a frustrating disease...you look fine but feel horrible. Luckily I never had any problems with side effects of prednisone and my energy level has been great....sleep good unless I am on my side ....usually sleep on my back propped on pillows. I have reduced my sugar intake and try to eliminate white bread, potatoes and rice when I can....I eat alot of raspberries and blackberries have started using a spice mix that is anti-inflammatory...tumeric, garlic and black pepper. Dr Weil has a wonderful anti-inflammatory diet that you can find on line. I try to walk everyday but here in AZ it gets very hot in the summer....have heard that swimming is good so will try to start that and also stretching....there is a good support group on the internet....Poly myalgia Rheumatica - it is an open group and there are sufferers from all over the world. May you all have a wonderful day and be as pain free as possible.....
Donna M.
18 May 2011, 17:26
I to have polymyalgia,for over 2 years now never hurt so bad in my life as I have with this stuff,I was also put on prednisone,after taking it for a year an a half I had to get off of it,It caused weight gain,and I stayed sick with other things I couldnt get rid of. I kept a sinus infection most of the time,, after I stopped the prednisone all together I havent had a sinus infection since,nor any other illness,I am still in a lot of pain all over my body,there are days I can hardly walk,I cry a lot,and dont sleep hardly at all at night.I stay so tired I cant hardly go some days,I dont have any kind of health ins. so I only go to the dr. when I cant go another day..my husband is disable and we are on a fixed income,,so nothing extra,,hopefully one day soon it will all go away,,,I would never go back on prednisone,even if it was the only med to take,that is an awful drug to be on,.....
Mary E
14 May 2011, 21:41
I was diagnosed with PMR in September 2010, after doing physical therapy for tennis elbow and radial nerve compression in right arm that worsened over about several weeks, with pain moving to right shoulder. Sudden onset systemically at that point with severe pain in hips (couldn't lift legs in and out of car, bed,couldn't turn over in bed, etc.), shoulders, general flu-like symptoms, almost incapacitated. Before I could get to the right doctor for diagnosis (rheumatologist), my primary care doctor gave me Celebrex, which took the edge off enough to be able to get around. I also got into a warm water pilates class (1 hour 2x/week), and it was a lifesaver--relief from pain, ability to move that lasted several hours out of pool. I plan to keep that up permanently. When the rheum started me on 20 mg prednisone I had immediate relief, so diagnosis was pretty clear. HOWEVER, her treatment plan paid attention only to sed rate and CRP, which returned to normal in two months, so she kept decreasing the dose every month despite continuing and increasing significant pain in right shoulder and then knee. (She said it wasn't the PMR, but it was.)So as prednisone decreased, pain increased. I finally got in to see another doctor for a consult, and his approach resulted in freedom from pain immediately. To "reset" the prednisone control, I went back up to 20 for a day, then 15, then 10. I was fine on 20 and 15, but pain returned at 10. So after a week with the 10 not working, I went back up to 20 for 2 days, 15 for 2 days and 12.5 for 2 weeks. I'm pain free on 12.5 and I'll now begin to slowly taper to 10--12 for 2 weeks, 11 for 2 weeks, and then to 10. He also told me to stop the Celebrex, and I don't need it all now. His experience is that you need to find the highest minimum dose that keeps you pain free, and then taper as long as the pain stays away. If the pain returns, the dose will have to be increased by "resetting" again from 20. The key is not to let the pain get out of control; if the pain increases, it will go way beyond what it was with the last prednisone dose. He also doesn't go by blood tests but by how the patient is feeling. I'm passing this along because it's working so well for me, and good news is needed in the PMR community. (When are studies going to be done??) So get into a warm water exercise class if you can (pilates emphasizes stretching and moving joints; buoyancy of water increases range of motion and strength with much less effort than land exercise) and stick with it. See if this dosing regimen is acceptable to your doctor, and don't stay with a doctor who isn't achieving improvement in symptoms. I wasted several months when the PMR might have been controlled and perhaps even resolved or at least controlled with less prednisone by now. I assumed the rheum knew all that was known. I'm hopeful that the 10 will do it this time and that I can continue to taper to lower doses with no flares, but of course I don't yet know what the outcome will be. Will try to post again with later results.
Ellie M.
25 Apr 2011, 15:03
I was diagnosed with PMR in 2000, and still have it. (So much for the two-year resolution) I also had Giant Cell, but that resolved fairly quickly with a high dosage of Prednisone. I have severe pain in my thighs and knees, and am now developing pain in the shoulders and neck. I took Prednisone for ten years, ending up at 2 mgs per day, then told the doctor I didn't want to take it anymore because of its ominous side effects. Doc prescribed Celebrex, which was useless. Voltaren is extremely helpful, but also has some potentially bad side effects. Now I'm taking two Tylenol for Arthritis every morning, and it helps somewhat. A very hot shower each morning is also helpful. But the very best thing I found is warm water aerobics, which I do five mornings a week. Please try it - it's the best medicine, and the only side effect is weight loss!
Rose Gowans
23 Apr 2011, 08:15
Just reading this forum and find it most interesting as I have just been diagnosed with PMR, have suffered pain in body for some time now and put it down to the menaupause. Huh if only I had haad the blood test several years back would not have had to go through with many tough days. Not so keen to be going on steroids with all the side effects. Anyone managed to treat without steroids? Would love to hear from you. If you do want advice on product I am taking which allows me to feel better sleep better and just a good feeling then do contact me on rosegowans@yahoo.co.uk and I will send to you the details. Its great and is Britains best kept secret. Not for long once I share with you. Do get in touch.
Phil
05 Apr 2011, 21:46
I started having symptoms about a year ago. They became really severe...expecially in the shoulders, insides of the elbows, neck, triceps and hips. Knees have been sore forever, so can't attribute that to PMR.

Various doctors injected me with cortisone in my shoulders, hips and knees with no real relief. Finally, an internist suspected PMR. I consulted a reumatologist who sent me for blood tests which confirmed the inflammation markers. The real confirmation of PMR though is that it responds within 24 hrs. to a suitable dosage of prednisone....in my case 20 mg/day.

I am now down to 5mg/day and plan to drop to 4 in the next day or two. Symptoms seem to have disappeared completely and I am back to playing softball on a regular basis.

Good luck to everyone who suffers from this disease. By the way, I am 70 years old and an extreme athlete with a 45 year old body.
Tish
29 Mar 2011, 06:31
I was diagnosed with PMR and RA in 2008, after a fall from a horse I was training. I had been feeling sudden pain in my shoulder and hip joints, after working with my horses or returning from my morning walks. The PMR hit like a freight train and I could no longer function. After being diagnosed, my rheumy put me on 40 mg of prednisone. The pain was gone, but the fatigue hit, along with weight gain.

Fast forward to today...after much internet research about diet and inflammation, my prednisone is reduced to 6.5 mg daily and I continue to work on reducing it. (Shots of Humira for my RA and pills for my osteoporosis are still on-going, yet it's all good.) My drastic diet change - no red meat, dairy, nightshade veggies, refined sugar, white rice, flour, starches, very limited coffee/tea, no man-made foods or liquids - sodas, chips, junk (foods affect people differently, so you need to experiment) along with yoga and walking, I am able to function again. I still have some pain and expect flares if stressed, but I am able to work with my horses again. My life is not back to where I was before being diagnosed, however with good family support, great attitude and a thankful heart to my Lord and Savior, Jesus Christ, I can live again. You CAN live again, only YOU can do it!
Thanks for listening to my story.
Pierette
17 Mar 2011, 19:56
Hello to all my fellow PMR sufferers out there!

I am so glad that I found this blog! I want to speak to all of you but especially to you, Jon, who said that he is miserable and taking narcotics! Please go to a different doctor and get off the pain meds! They will only make the problem worse.

My story is that I was diagnosed with PMR in Dec. 2006. I have been on Prednisone all this time. As with many of you, my symptoms started gradually but seemed to get much worse rapidly after I had had a dental procedure. By the time that my doctor took my symptoms seriously I was in extreme pain, could no longer dress myself,turn over in bed or function normally in any way. Of course, I was also extremely depressed and scared since I didn't understand what was wrong with me!
The rheumatologist started me on 20mg. of Prednisone but didn't tell me how to dose it so I ended up having all kinds of bad side effects! However, it was a miracle drug since I began to feel better withing 24 hrs! I also had severe plantar facsitis and could not walk well and with out pain. The foot doctor sent me to a doctor of physical medicine and that was when I began to learn to manage my illness and get well. I stayed on the Prednisone at different doses I have gone from 20 mg daily to 15mg to 10, 9, 8,7,5,4,2.5 and am now stable on just 1 0r 2 mgs. a day! However, my self management includes massage, yoga and 3-4x a week at the gym and walking. I had to work VERY hard to be able to do these things BUT little by little with the combination of medication and exercise I am almost functioning at 100%!!!

This past winter I decided that I was recovered and went off my daily 2.5mg Prednisone (I should also mention here that I have chronic shingles) I decided that I didn't need that med. any more either. BIG MISTAKE! As some one said, for the first week or so I felt fine and then I had one of the worst flares of my life! Long story short, I am back on Prednisone and Valtrex and will probably be for the rest of my life. The flare up is over thank God, but I am grateful for the arthritis management program that I have in place and am doing well. That being said, PMR is kind of a silent disease. I look and act fine so people either don't know that I have an illness or they don't believe it. That is a good thing but also bad. I have not worked regularly in years. Too much standing or too much sitting, stress etc. will give me a flare. So I am still working on that. I used to teach but that is a difficult job for me now. So, I am not sure what to do at 57. The illness sucks but life can be good, although I don't know if there ever is really the remission that you hear about, I don't think so. But I think that self-managment is the answer and a good attitude.

Thanks for letting me go on....hope my story helps some one!
Judy
08 Mar 2011, 02:12
I have both FMSand PMR With readng all the comments I feel for all of you.I know that even with the predisone I am in pain most of the time. Im just exsisting day to day week to week. Im sure you know what Im talking about. I have had this for two years this may and go down on the predisone and back up again. Good luck to all and hope they find a cure for it soon.
jon
07 Mar 2011, 22:30
im 27 and have been in pain since 18! life is a struggle not a gift! i take narcotics wich dont do shit for this "PMR". terrified i gotta live with it forever!
RICHARD PANISH
23 Jan 2011, 17:43
I'm better now

I started out with 15 mg of prednisone and a week later went to 20 mg for PMR. Three weeks later I had a positive temperal biopsy for Giant Cell Arteritis and my doctor increased my pred dose to 60 mg/day.

One year later I was symptom free and prednisone free as well. It was a long year. My ESR never went above 40, but my liver enzyme, alkaline phosphatase, went up to 300(sky high). I couldn't stand up even long enough to take a shower. I couldn't walk up or down stairs. I was confined to a chair for about 2 months before things started to get better, but I carried a wheel chair in my car trunk for 3 months because I had trouble walking.

Because of the prednisone I ate a diet that was high protein, no(low) sugar, no salt, low carb......I ate fruits, vegetables, eggs, meat, and fish......nothing processed because processed food contains salt. I took a multivitamin, 1200 mg of calcium, 1000mg of D because of the prednisone. I started walking a little bit at a time, and worked my way up to two miles/day. I took melatonin(sublingual, 1 mg) to sleep

I was lucky....It only lasted a year. I have been off prednisone for 6 months now and I think I'm ok. I'm writing this to let you all know that it does get better. Good luck to all of you
minecreek
20 Jan 2011, 12:55
I had a bad fall that I hold responsible for the PMR. Within 3 months I was on the couch 24 hrs. a day stiff, sore and hurting all over, lost 13 pounds, and was very depressed, having seen several docs with no diagnosis. I finally took my blood work results (greatly elevated SED rate) and diagnosed myself, went to my GP and he did what I asked. Gave me steroid shots every 3 weeks for 12 weeks. I had immediate relief, and here a year later, I am mobile and generally well. Sometimes I have pain and soreness that scare me. I'm praying it doesn't come back.

The sudden stopping of the steroid made about 60% of my hair fall out and I grew hair on my face and gained weight. The hair is coming back in and I'm on a diet. If the pain comes back I'll take the steroids, even if the side effects are predictable and bad. Was anyone cured after initial treatment with steroids, never to have the PMR come back? They tell me it will come back.
Kay
13 Jan 2011, 15:16
I am glad to see polymyalgia acknowledged. There is very little public knowledge of this condition, and hardly anyone knows about it. I was diagnosed in 2002 from symptoms, not an elevated sed rate. I have been on prednisolone (Medrol) at varying doses most of the time since then. Started at 12 and have been down to 4 and even none at times. I was down to 4 last month and now am having a flare up and am back to 8. Many physicians advise not to stay on steroids for that length of time. Others say 8 is a low dose and can be necessary to function.
Much thanks to the person who mentioned shingles. I had a case in 2001 and believe that all my health problems stem from that time.
David Samuelsson
10 Jan 2011, 13:18
hi, I have had PMR four months now and started with 25 mils of prednisone. i also stared taking a supplement called SAMe and calcium, zinc, chondriotin sulfate, glucosamine sulfate,MSM, a multivitamin and fish oil. I AM down to 10 mils now and am going to try 5 mil tomorrow. i have no pain anymore and will be getting a blood test in a few days to see if i am over this condition. i also drank no alcohol, ate no rice, potatoes, pasta, any kind of sugar, coffee, tea. cows milk, or chocolate. I also lost 12 pounds in the process. I feel that this diet has helped to speed up the recovery of this debilitating condition
Nancy
19 Dec 2010, 08:07
Thank you, everyone, for writing! I feel I am not alone when I read these blogs. My sypmtoms began in January of 2008. I am coming up on the 2 year mark and wondering... do the symptoms go away gradually or suddenly? I started on 15 mg. of Prednisone in March 2008 when diagnosed. Yes, I gained 15 pounds also. As I lowered the dose gradually, I have supplemented with Ibuprofen (1 200 mg. helps a lot!) and then later, Celebrex. I stopped the Celebrex recently due to yellowing skin, and am now on just 5 mg prednison with some pain, but not so much that I can't sleep. (Though it does take some effort with pain only in my arms to roll over which wakes me up.) I find that after a hot shower in the morning, stretching does help. I don't waddle or limp anymore (once the medicine has kicked in) but am not pain free in the arms during the day, but I think I can live with it - at least temporarily. Am hoping it goes away soon!
Sally
04 Dec 2010, 21:53
I have Polymyalgia and have been on prednsone for years, I would get donw to 3 or 4 mg and I would start hurting again, being on 5 mg for a long time and I could function. My doctor said I have been on it too long and she has weaned me off. I have been off completely for 4 days but starting hurting at about 3 mg. Now my hips.thighs, upper arms and shoulders are killing me, the dr said to walk 40 min a day, well how can you do that when you can hardly walk. Some days are better than others but don't know when I will stop hurting. I take as much as 6 liquid advil pills a day and I know that is too many but that is the only thing keeping me mobile. Has anyone tried any other exercise that has helped?
Martin
22 Nov 2010, 14:12
for PMR, do you have to or normally have high ESR? And does PMR cause burning sensations (in the feet)? My nerve tests are normal. I've had aches in my fingers. Does PMR cause this?
Martin
martinpianist@hotmail.com
Caroline
15 Nov 2010, 22:00
I have had FMS/CFS since my knee replacement 2 years ago. I have been on prednisone for 1 year and the rheumy is trying to get me off the drug. I am down to 5mg daily and the pain in my back and legs is debilitating. He hasn't said I have PMR but I have to wonder since everytime I get below 10mg of prednisone the pain eats me up.. I am on the usual sleeping aide and antidepressant for FMS/CFS and oxycodon for the pain. I can't get over the hump. Anyone have ideas?
KaCee
13 Nov 2010, 15:07
jerseyfran, I started taking pred, 15mg in
April, 10. I am now down to 9, I had a choice
be an invalid or take pred. so far I have had
minor side effects. To alleviate the stomach
problems I take my pred. early in the am
with a cup of cereal, a high protein
cereal, so far no tummy problems. Inflam. can
be deadly and the pred. reduces this and
our bodies can recouperate. Good luck to
everyone. After researching and talking to
my rheumy I decided meds, do not cause pmr.
I think exhausted adrenals can, also viruses,
such as shingles, injuries to our muschles
Stress, etc. I just take half day at
a time, and pray for God to make me well.

Good luck, and God Bless,
KaCee
















































KaCee
jerseyfran
11 Nov 2010, 17:41
I was diagnosed with PMR about 3 weeks ago. As I read all of the letters here and as I have been checking on different websites, it is all so confusing. Take steroids, don't take steroids. My primary physician wants me on the prednisone - trying 10mg right now. I do have several gastric conditions so we really have to be careful. I pray for all of us - take one day at a time. No other way. One minute, if we must. I don't relish the thought of having this disease for the rest of my life. Does anyone know if taking any particular meds, like Cholestoral med, depression med, High Blood Pressure med, can cause PMR?
Ulla
09 Oct 2010, 08:33
I had my first flare up of PMR in May 2008 treated with predinsone and it went away. Prior to that I was walking 6 KM a day and doing walk aerobics for 30-45 minutes a day. I had dropped 50 lbs and felt great.The doc said i had had a severe flare up of Osteo-Arthristis. The pain returned round about January 2009 and it took them until December when I was diagnosed wit PMR after a year of hell and no life. The rheumatologist tried me on Methotrexate to no avail Then they tried me on Prednisonol up at 20MG with horrific side effects. Hot flashes, the shakes, insomnia, weight gain (have put back on the 50 Lbs I lost), fatigue AND Diabetes- you name it. But it did take the pain and I had a life.
I have slowly been reducing the dose of prednisone (they tried me on this to see if the side effects would go away) am now on 5mg but the pain is back. Slightly different from before but there.
I think if I don't want to live with the pain and have a life I will have to increase my dosage again. But it is dilemma as I don't want the side effects and would like to stop all together so the diabetes will go away (as I am now on pills for that as well)

All I can say is I don't like this. I want my life back.
Margaret
03 Oct 2010, 16:31
Has anyone tried using just herbal medication and diet to treat PMR
donna
02 Oct 2010, 06:12
had a lot of intense changes in life in 1973-
stressful job,divorce,moving-in 1974 started getting daily tension headaches-diagnosed with fibro in 1995-have been battling this for 36 years.had mononucleosis and epsten barr type virus years ago-have had all types of treatment,drugs,biofeedback-have depression and fatigue and was ruled out for lupus,multiple schlerosis,lyme disease and
rheumatoid arthritis.i have osteoarthritis.
i have had a pain implant for 2 years now-
i still have flare-ups and the daily headaches-have to take pills to sleep-joined
a spiritual group-had togo on disability-at least now i hae time to take care of myself.
daily life is very challenging-i have cats
which really are a comfort-i go see a social
worker once a month and have medication monitoring.i dont know what else to do-can not take anti inflammatories anymor eand narcotics dont work-i do pilates which does help-i pray a lot and do the best i can-i feel life is passing me by and that there are
parts of this puzzle still missing-i have a lot of hobbies and interests but just wish i could break this awful cycle of pain,headaches,fatigue and depression due to
this illness-any comments would be appreciated
Donna
23 Sep 2010, 14:25
I wrote in March. Things are better with my PMR; I am on 5 mg prednisone and hoping to go to 4 mg in early Oct. I started, like many of you, with 15 mg and after a while we started reducing it; I usually had to stop at 5 and go back up to 7.5 because the severe pain came back. But here is the important thing to note - when I go down a dose, the first week or two is great and then the symptoms return. But if I stick it out another week or so, they go away. So stick with the reductions/pain.

Since I last wrote, I had my gastric band removed for a number of reasons, mostly because it was getting dangerous for me, and because in my mind, this could be adding to the PMR inflammation I had (after all, it was a piece of silicone in my body; maybe my body didn't want it.) There is no data on 60 year old women with both PMR and a band, so I had to rely on my own instincts and my doctors' opinions.

I have no expectations about this ever going away. But now that I don't have a band, I take 800 mg of Aleve each morning (with an antacid) and most days it holds the pain. Today it didn't and I took half of a hydrocodon (Vicadin?). I work for a living and that doesn't do my head any good, but it is a quick way to relieve the pain when you need to address other stresses and the pain is so bad.

All I want is to be relatively pain-free and if one more well meaning person tells me that I need to exercise more, I will burn their cars. If it were that simple, don't people think that we would do that? Of course, when your arm feels like it weighs 100 pounds, the last thing it will willingly do is a jumping jack!

Everyone, please take care of yourselves and don't let anyone tell you that PMR is because you did something wrong.
anne
21 Sep 2010, 17:10
this is for jean. you seem like you did fantastic on pred, but did you take 15 mg a daY OR WEEKLY. DID YOU HAVE ANY WEIGHT GAIN AT ALL, AND ARE YOU STILL ON IT, ALSO DID YOU GET THE moon face? my dr has put me on pred and i am frightened too death. Thanks so much and i will hopefully waiting an answer. thank god you are doing so well.
KaCee
17 Sep 2010, 12:39
Hi Anita and Kath,

So sorry you have this debilitating pmr.
I was diagnosed in April, 10. I am down
to 10mg. of pred. Left upper arm pain
is back but my understanding I am to work
down to a maintenace dose, one that I can
live with the pain. We've all been told it
can go into remission in 2 years, but some
does not. The coated pred. I do not take
I take prednisone, and take with a cup
of cereal, about 5 am. I have had no stomach
problem, but the milk is important, the pred
can cause esophagus and stomach problems.
I am having to watch the temple pain
and headache, so far not bad. GCA can be
secondary, so always make sure your pulse in
front of the ear and at temple is strong.
These two seem to go together. GCA is very
dangerous, do to the blindness when the blood
supply is cut off to the eyes. Just want
everyone to be aware of this if they have pmr. How low is your sed and crp rate. Mine
was 97 in April it is now down to 29, needs
to be lower. I hope you both are doing better
and we will all be pmr free soon.

Have a Great Day,
KaCee
ANITA
08 Sep 2010, 12:42
I was diagnosed with PMR today. had FM since 1985. The pain was so bad I could not get out of bed brush my teeth or even dress myself, brushing my hair was out of the question too. My arms were almost unuseable, could not lift them at all. My neck and shoulders would not let me turn my head. So much pain just wanted to cry and did. Dr. started on 15mg pred and feel some better to day, can use arms a little today.
I have been taking cortizone and trigger point injections for about 25 years. Not much quality of life. Working is putting me in a earily grave. Dr. says you can have FM and PMR together. Also tested positive for epstine barr in 1985. I am so confused now another diagnoses and more to understand on how to cope with it all. Need to work to pay the bills but it is geting harder and harder. Anyone out there with these symptoms and problems my God be with each and every day.
kath Q
03 Sep 2010, 17:02
I was diagnosed with PMR nearly five years ago, I was told by my GP that it should go after two years. It didnt. I have been taking enteric coated prednisolone since diagnosis. Now my GP has changed my prescription because NICE evedently say there is no evidence to say enteric coated has any benefits over non-enteric coated.
I am now on 8mg prednisolone daily unfortunately each time I try to reduce below this level the pain and stiffness returns and my ESR increases. Is this a normal length of time to have PMR? and are there really no benefits to taking enteric coated prednisolone.
Jan Collins
14 Aug 2010, 14:31
I too was mis-diagnosed with Fybromyalgia some7 years ago. By chance in a blood test it was found I had high inflammation levels and was diagnosed with PMR. Have been on reducing levels of Prednisilone until I came off in 2009 after taking Methatrexate as a steroid sparing drug. Still on Meth and have too many flare-ups, that they are getting closer and closer. I take a small dose of Pred for a couple of weeks to ease it all, but it just comes back. Over the years different parts of the body suffer the pain....at moment back is burning and around ribs and buttocks and thighs. Getting up in the morning is so bad it is a laugh to see me struggle to the loo. I am 67 and was very fit before all of this. I reckon I have it for life. Any recommendations on diet to ease sysptoms. I haved gained 25lbs over 7 years. So many people seem to have it.....
Diane
13 Aug 2010, 22:42
I was diagnosed with PMR in June of 2009. My sed rate was off the chart and Rheumatologist put me on Prednisone. I also could not move my upper legs and arms and could not get out of bed when this initially happened. I went to 20mg. gained 15 lbs and have had a lot of side of effects from the Pred but it also has really helped me to feel well and have lots of energy, got rid of my tension headaches and other things. I am now weaning off and am down to 5 mg. Every 3 weeks I drop 1 mg - per Doc. Supposedly it goes away within 1-2 years. I didn't know it could come back but I guess it can.

I don't understand why more is not written about PMR since it is considered in the arthritis family? I took a class on arthritis and it really helped me to understand it a little more even tho it did not apply directly to me. The Mayo Clinic website explains PMR very well. Check it out and good luck and best of health to all of you!
Jean
30 Jul 2010, 09:38
Hi,
I was wrongly diagnosed with fibromyalgia initially, given amytriptiline to help sleep at night. 13 months ago I started on Prednisolone 15mg. The results were amazing, within 1 week, I was so much better. I am having trouble getting below 10mg, but my energy levels are greatly improved and my quality of life. I swim 3 times a week and have even done salsize. Hope other people get the help I received from a good specialist.
Have a pain free day.
Karen J Buck
27 Jul 2010, 01:41
I've been reading all the emails you've listed but I think some of the statements at the beginning could stand some repeating with more detail in the individual
letters.

Example:

Laura H.

Can a person have BOTH Fibromyalgia and Polymyalgia at the same time? Yesa you can
as far as I know you can have an unlimited number of diseases. I have had FMS (slightly different name back then) and now my body decided to add PMR to the mix. Since the worst side effectscan be weight gain, i gained 10 lbs in 2 weeeks. That doesn't help me get around any easier. HELP!
KaCee
19 Jul 2010, 12:19
Hello Everyone,
RFW, Congratulations!! 18 months sounds great...Were you crippled with pmr?
I now have hope that this horrible poly whats it will go away soon, I am on my 4th month of prednisone, was totally crippled, could not turn over in bed or step out on my feet with out almost screaming, upper arms were so painful could not sleep, sed was 97. Prednisone was a miracle for me, I have always been active and love to play golf so maby by fall that will be possible. How long did it take to get off of pred? My sed was down to 29,so he lowered pred. to 12.5,started on 15mg. I don't think I can lower the 12.5 for a while, I notice I am stiff and sore when I wake up and some pain in upper arms. I am also loosing weight with pred. did that stop when you stopped the pred? I do not need to loose. Thanks for listening, and everyone have a great day,

Be Blessed,
KaCee
Terry
17 Jul 2010, 13:15
I have had PMR now for 10 years with pain-free periods but the pain always returns. The most recent was after a car accident and the physical therapy. I take prednisone which thr MD increased 4 days ago with good results. I tried to work through it without the increase but I was becoming non-functional. I also have some anxiety symptoms and become cranky and crabby when there is a flare-up. It would be great if it only was 2-3 years. I am 70 so it probably will last the rest of my life.
RFW
15 Jul 2010, 10:02
Diagnosed with PMR two years ago by rheumatologist. Painful shoulders, neck, hips, and thighs. had trouble getting out of bed at first. High inflammation markers in blood. Dr. put me on 15 mg of prednisone steroid which started to reduce pain. A lot of side effects from steroid; insomnia, mood shifts, weight loss, cataracts, stomach problems. Finally, after 18 months. prednisone stopped. Feel Ok now, but still have aches and pains at times. Stomach seems to be permantly srewed up. Take a blood test every four months as PMR can come back.

The good news is that PMR is the only autoimmune disease that goes away after one, two or more years.
Sharon
07 Jul 2010, 10:49
I was diag. with PMR in April. I am on 20 mg. of Prednisone and will, in time, taper that to 5mg.
I cannot believe the difference in how I feel. I was unable to move my arms, my hips hurt, it was almost impossible to get out of bed or turn over in bed.
I am so grateful to my PCP for sending me to a specialist who's care I am under now.

It is wonderful to have my active life back.
Madeline
03 Jul 2010, 14:59
My husband (was a healthy 74 yr old) after "fighting" with a rototiller and then cutting down three large trees with a small chain saw experienced trouble with hands (swollen) and fingers (numb) and pain in forearms. Diagnosis was carpal tunnel. Bought wrist splints. Since then, pain in shoulders, hips, and muscle weakness. Taking Arthrotec and ex-str. Tylenol for Arthritis. Not any better (Swelling on hands has gone down some). Is this two things: carpal tunnel and polymyalgic arthritis or ??
Deb
30 Jun 2010, 12:05
Diagnosed with FMS in 1993 at age 33 but had symptom long before that. Also dx with EB Virus in 1993 and still in 2010 have positive EB Virus (noncontageous) with titers being 4x higher than norm. Also IgA is low. I see an Infectious Dis Spec since it involves the autoimmune system (and arhtritis is an autoimmune disorder). An immunologist (if you find the right one) can also be very helpful in the treatment/cure. If you have not found the results/answers for yourself...GO SEE ANOTHER SPECIALIST. A lot of people are suffering like us but there is no research data. I am experiencing severe shoulder pain that Vicodine doesn't touch...so wonder if it is inflammatory disease like PMR. Your diet, weight, level of activity, attitude, self-esteem, and a whole lot of other things play a significant role in your general well-being. A good Allergist/Immunologist can also be helpful in determining food allergies/sensitivities that can contribute to your symptoms like allergic rhinitis. It is a big ball of wax.....I have been dealing with it for over 20 years and I am 50 now. I have been on disability x4 years because being this sick made me so depressed I didn't want to live (or at least thought I didn't). So all the energy was spent on treating my depression instead of the other problems...my depression is under control but I still have all the other to deal with, so be careful and don't let them slap a diagnosis on you that is not really the culprit....the real culprit is the FMS/PMR. If you have FMS you also have Chronic Fatigue Syndrome---they are basically one in the same because the FMS causes the CFS. Four main doctors to be involved: A GP, a Rheumatologist/Immunologist, Allergist, Infectious Diseases. The real challenge is finding these types of doctors who are well trained in the area. Young docs are not up to date or so it seems. I trust the older docs who have been around it for a long time and who do research/patient studies, etc. It is frustrating to say the least. But you are your own best advocate. A family member or friend who will support you can make a difference, so take them with you to the doctors and let them advocate for and with you. It does make a difference!
Keith
25 Jun 2010, 16:16
Ive had symptoms for quite a while now but recently they have got much worse my ESR hs been high for some time, my gp sent me for various test including cancer all came back negative, she had suspicions it might be PMR after all but was reluctant to prescribe steroids until i returned with the symptoms much worse so she put me on Prednisolone 15mg daily, i feel much better now but i have headaches in the back of my head and on my temples so i
I've got an appointment to see my gp on Monday 28/10/2010, i hope she can put me on a higher dose for a while because i'm very worried i may lose my eyesight.
phyllis
24 Jun 2010, 07:48
Okay, so now I have a name for the pain! PMR!
But, I don't see people on this site talking about being incapacitated at times. When the pain starts, I have to go to bed; put on diapers, because I can't move the legs much at all. Too much pain to stand up,move around in bed or get up fast enough to use the commode next to my bed.
I have no life.
I see zig zaggy every once in awhile.{Scares me!}
What kind of food should be avoided?
Lois Morley
22 Jun 2010, 11:23
My Dr. has diagnosed me with FMS it's been atleast five years. She has it herself so she is very understanding. Currently Iam taking Lyrica,Flexeril,Neurontin and Ibeuprofen.I have found these really help me cope with my day and I work in a hospital. And when I'm feeling my worst I have Vicodenes to take. I really think it's from all of our prosessed foods we eat and the junk food we consume. I'm definatly guilty of this. I stop and think about it now and then because it wasn't like this in the sixties or seventies. Only sinse the eighties and more in the ninties has it been more noticed.
KaCee Alexander
22 May 2010, 14:45
After several months of suffering with
stiff and sore legs, Arms I could not raise
up, flu like symptoms, my GP said I needed
to see a Rheumatologist. I did 5 weeks past,
and he diagnosed PMR. After 5 days on 15mg
of pred, I could walk again. My sed rate
is down from 97 to 52 and my crp has also
decreased. I am still having terrible pain
in upper arms and can't raise them up
past my shoulders. I have lost 10 lbs. since
I started pred. and I have no energy. I am
also experiencing occasional pain in temples
and I can now see my blood vessels in side of face. Dr. said to watch for symptoms of GCA, Has anyone experienced the painful upper arms, with PMR and how long does it take the pred. to make them better???? I have always been athletic, love to play golf, but now I am thankful to be walking. Thanks and have a blessed day.
KaCee
Linda Joseph
21 May 2010, 22:38
I was dianosed with PMR in January. I had a stiff neck, burning back and stabbing pain the the back of my legs. Sometimes the pain feels lilke worms crawling through my muscles. I was also so stiff in the night that I could hardly move my covers. I had trouble rising from a chair, shampooing my hair or dressing. I started out on 10mg of predisone. Now I am alternating 7.5 and 5. I also take methotrexate once a week. When the weather warms up, I am almost normal. I hope I can get over this.
Jessie Mackintosh
04 Apr 2010, 09:54
I was dignosed with FMS last year after suffering with aches and pains all over for some time. I had a a frozen shoulder around five years ago and suffered for a long time. I feel I have not been right since then. I was prescribed fluoxitine a few months ago which seemed to help for a while but he symtoms have now come back.
Val
01 Apr 2010, 15:19
Hi, have any of you tried "Sarah Matheson Trust for Multiple System Atrophy
Iwas diagnosed PMR on 09/03/10 Also have Hiatus Hernia, poss ulcer, Low spinal probs, waiting Neurology app; on 15mg prednisolone, bbeak-through pain 3/4am, sleep about 2/3hrs per night.4000mg paracetamol, doesn't touch back pain. too much energy on the go 18/20 hrs a day . today looking at old papers I downloaded 5 years ogo and found :- MSA guide, seems to fit my symptoms. will let you all know, when I have seen Neuroscience specialist at King's Hospital London UK
Mary Jane
29 Mar 2010, 13:51
My sister had been diagnosed with fibromyalgia years ago. She recently had a mild stroke in june of 2009, which left her partially blind in one eye. I am wondering if she has had polymyalgia all along which would cause this blindness. Her eyesight will not return and my concern is her other eye may be affected if she does have polymyalgia. Any one out there who might have some info, I would greatly appreciate the help.Thanks
Dianne Fettig
24 Mar 2010, 13:35
I had polymyalgia a few years ago.My doctor sent me to a Rheumatologist and he had me take a antinflammatory drug which worked within a month. My polymyalgia never came back. He did not want to give me prednisolone as I have mild osteoporosis.
My husband had polymyalgia and was on prednisolone for a month or so and is just fine now.
Pat
21 Mar 2010, 16:33
I was diagnosed with PMR last Aug after suffering excruciating pain down both arms, in my neck and down the front of both thighs. I was put on Prednisone (15 mg) and now am down to 5 MG (went up and down for the last 7 months trying to control the stiffness and soreness). I feel better if I take 2 ibuprofen around mid morning...by afternoon and evening I have no pain or stiffness...but in the AM after sleeping all night...its back...sometimes bad...I am trying to see what causes flare ups...I have found that if I eat alot of sugar it seems worse the next morning...same thing if it has rained and the pressure is up...(I now live in AZ in Phoenix, so that is rare but have noticed this winter and early spring it has happened a few times). Will try to wean down further on Prednisone ..will use the 1 MG tablets (I take with food and milk to reduce stomach problems)...and hopefully in 2 years this will be gone...however, from alot of what I have read from people who have this disease...it can go for years. I have always been extremely healthy...so waking up one morning with this was very frustrating and disheartening...but, everyone has something and it could be alot worse...hopefully down the road I will get more relief....would like to correspond with someone about my age (63) to find out how they handle..and for support...anyone out there in the Phoenix area (west valley) who can emphathize with this? Love to hear from you...all have a blessed day and may you get relief from the pain...
Pam
14 Mar 2010, 09:31
Is there anyone out there who has recovered from this and no longer suffering. Either with steroids,nat remedys or diet ??
Donna
10 Mar 2010, 13:52
After months of agony, blaming myself for gaining a ton of weight and being inactive, changing my anti-depressant because I thought I was regressing, living to go to work and come home to bed, accepting an arthritis diagnosis from a orthopedic doctor after I fell and reinjured my knee, all this while looking down the barrel of my 60th birthday and Dr. Oz's real age test result of age 79, well I wanted to die.

Then my PC did a sed rate test, and mine was three times the norm. Within a week, I was at the rhuematologist, he gave me 15 mg prednison a day (I have a gastric band and doctors have always said to steer clear or the Motrins and Aleves), and by the fifth day I could rise from a chair or the toilet without agony. My right arm no longer feels like it weighs 100 pounds, and I am finding my good self that I thought was gone for good. I don' know what the long haul will be, but what a relief to know I have something I did NOT cause (I have been heavy all my life and NEVER felt the way I did before, which I attributed to age and it all catching up to me.)

I never heard of this thing, was amazed at the consistent info about it on the internet. Be vigilent, everyone, and take care of yourselves.
carol
28 Feb 2010, 07:21
I have been diagnosed with pmr, and am on 12 mg of methopredsolne, it is a stronger dose of prednesone. The pain is still here but tolerable. I am very tired and my arms and legs feel like lead. The doctor tried to cut me down to 10mg, but the pain returned. The doc is in NYC, and is wonderful his name is Harry Spieia. He is the only one who gave me a diagnosis. I will try to cut the steroids again in the near future. I am also going to try acupuncture.
Angie
15 Feb 2010, 18:33
I also have both FMS and PMR and am currently down to 5mg Prednisolone. However, symptoms are returning, but it is often difficult to tell which pain is which. As I have to take Warfarin, Iam basically stuck for painkillers, as most of them react. At my worst point I was literally flat on my back for weeks, using hot water bottles incessantly to try to ease the pain and only getting up to visit my GP. Just hoping the steroids will keep it at bay.
Cathy
13 Feb 2010, 15:50
I was diagnosed with PMR in 2001, did not take prednisone for obvious reasons at first, then in 2007 went on prednisone, 10 mg. with good results. After a few years now I was able to get the mg. down to 3 but lately it is not working as well. Because of the eventual side effects of prednisone, my physician is suggesting Methotrexate. Has anyone tried this for PMR?
Joyce Hilary
04 Feb 2010, 17:13
Just discovered this website,I'm not sure if I have fibro or polymyalgia, all I know is that I hurt and ache all over. As I am sensitive to lots of drugs and medication my doctor gave me some pain patches to put on upper arm. This made me sick and abnormally sleepy, but no pain, acton thatand I felt active and upright! For the 2nd patch I cut it in half and this cut down the sleeping, and I still had the other half to last another week.
Elizabeth
29 Jan 2010, 09:23
I was diagnosed with polymyalgia rheumatica in 2009 and have been taking Prednisolone with good effect. I was started at 15 mg and am now down to 10 mg. I have been able to exercise to help with the stiffness and have been doing okay.

As I take enteric coated Prednisolone, I have had no problems but unfortunately the 1 mg tablets are not available in enteric coated so I can't tolerate them. So to reduce down from 10 mg is a problem as the next step down would be 7.5 mg. I have been reducing by alternating days on 10 mg and 7.5 mg but then had to increase up again as my symptoms returned.

Has anyone else managed to resolve this problem, (without having to take non-enteric coated 1 mg Prednisolsone tablets)
olga irka
08 Jan 2010, 16:13
I was recently diagnosed with PMR. For over 4 months i had agonizing pain in all my joints. My rheumatologist put me on 15 mg Prednison a day. I am wondering if this will help me. Does anyone have permanent results by taking herbal supplements? There is a lot on the market, however, i am concerned that if trying that venue would not make my condition worse. anuynone tried accupuncture? would be very grateful for any comments
Merijo
01 Jan 2010, 11:11
Barbara---my good friend Lois had such severe fibromyalgia, she had no life. Her daughter, who works in a doctor's office, was insisting that she try an alternative nutritional approach, which she refused. When she was at her worst, making it to work, but coming home to lie in the floor and do nothing until going to work the next day, she had a family situation that made her decide to at least TRY what her daughter suggested. (Her daughter was pregnant with TRIPLETS, and would need her help.) She soon became symptom-free, and last time I talked to her, she was working part-time at a "Curves" salon, and was referring people to the things that helped her, even though she is "retirement age." She would tell you what she has done, so if you want her email, request it from me---hosts@rivercene.com. She would phone you, if you wanted to talk to her--she is a very giving person, and has talked to others I have come across. My friend has Polymyalgia Rheumatica, so I was online looking for info for her. I have a degenerative disease too, which I have kept "at bay" nutritionally. Also--If I stay COMPLETELY OFF OF WHITE FLOUR AND SUGAR, I HAVE A DIFFERENT LIFE. It's hard to do, though. Most people won't try.
Dot
28 Nov 2009, 17:38
I was fit as a fiddle one day and in intense pain the next. Now I have been getting worse and worse for six months and finally have a diagnosis (by default, because I tested negative for everything else) of polymyalgia rheumatica. I have been taking Prednisone for one week with pretty much no results. Naproxen worked better for me, though I have not felt normal in six months. Getting up and ready for the day is a big struggle, though I am better later in the day. Any advice about how long to stick with prednisone waiting to feel better?
Barbara
20 Nov 2009, 15:32
I have had to have oh knees replaced this year due to arthritus deterioration. I just had the second one done Oct 14. Have had FM for 30 years (am 60 now) and it flared up with a vengence after this last surgery. Worst pain in the thigh of the let that was operated on. And it is worse in the evening and during the night. I have never had that problem with FM before..ie during evening and at night. It wakes me up in the middle of the night and I have to take more pain pills and I am almost in tears waiting for the pills to work. Has anyone else had this experience?
freda daniels
09 Nov 2009, 22:56
i have both polymyaliga and fibromyalgia.
Diane
03 Nov 2009, 13:26
Help...have no diagnosis after 10+yrs.
I have many joints aches. Hands/hips are the worst. Have been to rheumatolgists twice.Still no Dx. Elevated esr and crp.headaches/and painful joints. Thought was ready for hip replacement but arthritis in them not so bad....Stairs very difficult.Am only 53.! Ortho guy suggested i get worked up for polymyalgia rheumatica.
Stopped 200mg celebrex for 2 weeks and was unable to go much.very painful(so back on that).Will not see the local rheumatologists as they have come up w.nothing.?what to do?
Does anyone out there have similar symptoms?
Carol
30 Oct 2009, 20:33
I am going into my 4th year with PMR, so much for the dream of 2 yrs before the symptoms subside) and am now off Prednisone. I was treated with that for 3 yrs and the doctor wanted me off as soon as possible. At the beginning my ESR was in the 90’s however, I can’t remember what the CRP was. My ESR is now in the high 20’s+ depending, I have Celebrex, but I don’t like taking it due to problems with a creatine level while on a different anti-inflammatory so rely on 2-4 Arthritic Tylenol a day and suffer through the rest of it. I had the flu like symptoms when it started 4 years ago and sort of wish I had the poor appetite back. I gained 25-30 lbs while on the Prednisone and was practically pain free with the exception of my back thigh muscle in one leg. I am now looking into eliminating foods that might up the inflammatory levels in my body. I am ready for relief as each day is a pain (pun intended).
John Carman
26 Oct 2009, 14:58
I've been diagnosed with PMR. Then horrific headaches began. I had biopsy of temporal artery to check for Giant Cell Arteritis, but it was negative, although the surgeon said that my being on prednisone might have affected the test result. The headaches are debilitating, and now my eyesight seems to be affected--recent new glasses, which were OK, are now making it hard to see across the room (TV) and difficult to concentrate on reading.
What now? Do I ask for a second opinion on the biopsy result? Nothing seems to help the headaches except strong RX pain meds.
Any suggestions?
joyce
05 Oct 2009, 15:33
I was diagnosed with Polymyalgia rheumatic.over a year ago and have been on steroids since then Sometimes up to 60 and right now I am on 20 My heart dr. wants me off the steroids because of the effect they can have on the heart, so I have an appointment with a FACP. Are there certain questions I should ask him? Since I have been on the prednisone I have trouble controling my hands-tremors, they shake so hard at times that i cannot type
Elllie G
25 Sep 2009, 14:17
When I told my doctor about muscle pain in my shoulders, thighs, etc., he said it could be a little arthritis. That was in June of 2006. I took a great deal of Advil that summer and fall (always with food to avoid stomach problems), and when I had my physical in February, blood test showed CRP at very high level, indicating inflammation. My M.D. ordered sed rate test which confirmed inflammation. He prescribed prednisone for a short term. I had very little energy but kept working, and after 2 1/2 years,I was about back to normal and no longer need Advil. I hope this will be encouraging to others.
carla
21 Sep 2009, 12:20
My mother (82) has had polymyalgia for over a year now. Her longterm prognosis is she will have the condition for the rest of her life. Not encouraging, especially as it means Prednolosone or Prednisone for life too.....
While researching the illness I have found three herbal remedies which pertain to being 90% effective in producing a cure. Does anyone have any experience in treating themselves with these herbal remedies? What results? Any ideas or feedback?
I would so appreciate a response. Also is there a polymyalgia self-help group anywhere?
I wish you all a pain-free day!
Rick
02 Sep 2009, 09:17
I have been recently diagnosed with PMR. I'm taking 10 mg of prednisone/day. I still have fatigue and weakness, but I have found that if I take 3000 mg of MSM daily, I feel much, much better. It makes a big differernce in reducing inflammation.
QUESTION: Should I continue to medicate with prednisone and MSM or should I ask the doctor in increase the prednisone to 15mg/day. I'm not sure anyone can give me an answer...........even the doctor.
Linda Fraser
19 Aug 2009, 01:50
If Giant Cell Arteritis is so bad and one could lose his/her vision, why is it that more is not written about it? I am 64 and have had Giant Cell for a year. It has been an up and down year from 60mg of Prednisone to 20mg which I am on now. I still have scalp pain and vision problems especially when I go down to the 20 mg. I also have polymyalgia bt it doesn't seem to bother me as much. Hot weather and being tired seem to make the Giant Cell worse. Any suggestions I can get to rid myself of this condition would make me very happy.

Thank you,
Nancy
05 Aug 2009, 10:20
Probably not both.....Both Fibromyalgia and Polymyalgia are difficult to diagnose. Give your Dr. a little more time, and get a ESR test and Crp test done (blood tests). Those tests will tell your Dr. if you have inflammation or not, which should (or not) point to one or the other. If you have PMR, visit this informative website: http://www.pmr-gca-northeast.org.uk/index.php
Nikki
20 Jun 2009, 23:15
My mom was recently diagnosed with both PMR and FMS. We are really concerned and are not sure what to do. She is still taking a steroid for the PMR, but the have not prescribed anything for the FMS. If you find any remedies please share.
Laura H
09 May 2009, 00:03
Can a person have BOTH Fibromyalgia and Polymyalgia at the same time?

I have been to see 2 different Rheumatologists:one said FMS and the other said PMR. I was initially taking Voltaren (anti inflammatory) and felt some definate improvement.
But recently I started Prednisone (Day 3) and feel worse as I was told I can no longer have the Voltaren (while taking the Predisone).

I'm totally confused now....I have symptoms of BOTH FMS & PMR??? Should I get a 3rd opinion?

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