No one knows what causes fibromyalgia, although there are a number of theories. Some studies show that an injury or trauma, physical or emotional, may affect the central nervous system’s response to pain. For example, a 2002 Scottish study of 136 patients with a diagnosis of fibromyalgia and 152 controls found that 39 percent of those with fibromyalgia had significant physical trauma in the six months before they were diagnosed compared to only 24 percent of the controls.
Some scientists theorize that trauma leads to biochemical changes in the muscles and, later, the central nervous system, leading to chronic pain, or that injury to the central nervous system interferes with brain wave patterns. Other researchers believe hormonal changes or infections, such as a flu virus, may trigger fibromyalgia.
There are some scientists who suspect that lack of exercise and changes in muscle metabolism may play a role in fibromyalgia or that the opposite, muscle overuse, may be the key.
Sleep disturbance, a symptom of fibromyalgia, may also be a cause. Sleep disturbance lowers the production of a growth hormone crucial to the repair of muscles.
An established link exists between fibromyalgia and depression, but no one knows if depression is a cause or effect of fibromyalgia. What does seem to be true is that all of these conditions may contribute to fibromyalgia for different reasons.
Research is continuing to examine these and other potential causes in hope that a better understanding of what causes fibromyalgia could lead to ways to prevent it or to treat it more effectively.
THE DR.S HAVE TO START ALL MEDS SLOWLY, THEN THEY CAN GIVE YOU MORE UNTIL THEY GET THE RIGHT DOSAGE THAT WORKS JUST RIGHT FOR YOU.
TOPAMAX IS USED FOR MORE THAN ONE CONDITION & THEY RECENTLY DISCOVERED THAT IT WORKS WELL FOR PAIN!!!!!!!!!!
IF YOU ARE NOT SATISFIED WITH YOUR PRESENT TREATMENT MAYBE THIS WILL WORK FOR YOU!
GIVE IT A FAIR TRY! IT WORKS FOR ME! I AM LIKE A NEW PERSON! LIKE NIGHT & DAY!
I have my life back!
I have also been on alot of different types of drugs and even have been getting steroid shots. Finally now, though, I take Cymbalta and Amitriphaline(not sure of spelling). I finally can sleep at night, sometimes I will wake, but mostly can at least get back to sleep within the hour.
Hope to all
I have the Fibermyalgia muscle aches and the nerve pain all the time day and night and do not sleep execept for short periods at a time. About 4 hours is the limit I can do any kind of physical effort such as cleaning, working in the yard, etc.. Stress causes the Firbermyalgia to be worse.
I find that doing stretching exercises which I learned from my fitness instructor help the muscle aches more than anything. If I can not sleep because of the aching, I will get up and do the stretches. I try to take a walk everyday.
Currently I am on Cymbalta, blood pressure meds, use Valteran gel (prescription) and lidocaine patches. Aleve or Motrin do not help. Tylenol is best but the Doctor does not want me to use it much because of side effects. I would like for the doctor to prescribe sleeping pills again and a better prescription pain med. In my mind, the side effects from the sleeping pills are not as bad as those from not sleeping.
Stress really makes the Fibermyalgia act up so I try to do things that help with stress -knitting, a cup of hot tea, talking with friends, read, etc.. Try not to cut yourself off from people but do not spend all of your time with them talking about your pain. Get a pet if you are able to care for one. You will still have the pain but sometimes keeping busy, even mentally, to take your mind off the pain helps.
My husband is very understanding but I hate to admit that I am hurting. It sounds like I am a hypochrondiac which I have always found annoying.
Like everyone says in their testimonies, it is almost embarrassing to say you have "Fibromyalgia". People think it is in your head or else if you describe it they will say "That is what I must have." I have always been a healthy active person. This disease, syndrome or whatever it is called is very frustrating.
I am grateful that I am retired and do not have to go to a job daily. I just could not do it.
Every symptom everyone has described I have, but depression.I had overwhelming fatigue, it was parlyzing, I was on the couch all day. At one point, because of all the neurological symptoms, I was diagnosed with MS which I thought I had for years. I was unable to walk very far, would fall and unable to navigate steps and everything tired me out. Every place I went, I was in a wheelchair, I still use a wheelchair. The doctor wants me to use a walker with a seat more. Because of my neurological problems, I use a catheter, also because I have slow emptying into my stomach when I eat, also no elimination. I had to have a colostomy. I still need medication for the problem and the only place I can get the medication is from Canada, not sold in this country.
I used to be on a lot of pain medication, eventually I backed myself off if it. I tried all kinds of natural supplements. I tried everything. I went to support groups, FM therapy groups. Over the years I was on low dose anti-depression medication, Lyrica didn't do much for me but put weight on, Savella didn't agree with me. I was on Cymbalta and numerous other medications.
In addition, I have arthritis, hypothyroidism and osteoporosis. Bones in my feet fracture. I also have vision problems. FM also can affect your eyes.Also hearing impaired.
One thing the doctors all say is exercise, I said sure, when I can't move or get out of bed that I am suppose exercise. Well exercise does work, especially water exercises. The YMCA or neighborhood rec center probably will have an exercise program. If you have access to a pool, just hold on to the side and kick your legs a little, it will make you feel better.
I don't use too much medication anymore, because I found not many work at all or that well for me and it gets expensive.
I use an arthritis medication, but my doctor also suggested taking Glucosamine & Chondroitin with MSM. One thing that is important to take, because we are not all that active is make sure you take Vitamin D for your bones. For my paralyzing fatigue, my neurologist prescribed Amantadine. It is a god send. I also take Neurontin.
For sleep issues, I didn't sleep at night, I used 3-4 Valerian root and a cup of fresh brewed chamomile tea with a little honey and one pain pill so the pain doesn't wake me up. I sleep all night. For me it works well. In place of Valerian root, Theanine works well for some.
For "frustrated in the south" and a few others, I suggest getting a new doctor. I had to go through quite a few before I found a good doctor and when I moved to Florida, I had to start all over again in finding a doctor. Now I have some good doctors. I suggest calling your local Arthritis Center where you live and find out where their are some support groups, go and ask around who they have for a doctors. You will hear a few names a few times, then you may have found yourself a good doctor. Beleive it or not their are few good doctors around. At one time I didn't think so.
I live in constant pain, even with an occasional shot from my rheumatologist, but I deal with it, but one secret is get getting a good nights sleep.
Ask around in the support group what others do, I try to go the natural way and it works for me, better than chemicals.
Hope you all find a way to feel better and make things work for you.
If you don't let your hands or feet get cold, you won't have to warm them back up.
Mine came from being to fit. I did Martial Arts and Body Building and worked a 12 hour shift plus overtime.
It hit me like the flu first. I thought I was going through the change of life of something.
I went to one Dr. after another and finally this nurse said I think you should go to a rhuematologist. I said what the heck for? The stuff going wrong with me is not with a rhuematologist.
That was back in 1989. All the symptom's you all have had have come and gone and some stayed.
I remember the days when I use to feel good, really good and I miss those days. But I have to accept where I am and work from here.
I am going to try Yoga again, but this time I'm not going to kill myself, I'm going to go slow.
Massage helps me alot but it's expensive. Juicing with a Juicer helps. 2 Apples 2 carrots and some celery.
Swimming kills me.
So whats good for some is not for others. You just have to keep trying what works for you.
3 drugs help me. Something for my Muscles, something for my nervous system, something for pain and something for sleep.
Some of the meds I tried made me sicker at first.
Good luck to all of you just keep trying to find out what works for you.
Finally, when my arms started going numb and I couldn't hold a pencil at times, I was seen by a neurologist ~~ an absolute wonder!! He suspected possibly MS or lupus. He ran test after test, all normal or borderline, but still no diagnosis. During all this time (almost two years) I was listening to friends and researching as well. Finally, I suggested fibromyalgia to the MD. He checked a few things and immediately scheduled me with a wonderful rheumatologist. The rheumatologist confirmed fibro., but also said something else was wrong. Turns out I also have RA throughout my body.
Long story shorter, the rheumatologist scheduled me for a four-week pain management program with incorporated gentle exercise, psychological counseling, and tips on how to modify ways of doing things such as vacuuming, lifting, etc. As long as I followed this program religiously, I was great with the fibro. ~~ more energy and felt better than I had in years. At no time had I taken medication for fibro., and still do not, but I take more than enough for everything else!
I have allowed myself to lapse on the program and fibro. has reared its ugly head and I am finding myself waking with bruises where there were none when I went to bed, my muscles hurt to touch, constant fatigue, etc. My goal is to return to the pain management program, delete white flour, white rice, sugar, salt and all preservative-laden foods from my diet, including all diet sodas and items including Splenda, NutraSweet, etc. This decreases the inflammation of the RA and helps with the fibro. Green tea -- a cup two or three times a day -- helps with inflammation. This was confirmed by my rheumatologist who also recommends massage therapy and acupuncture.
As has been said before, you must be your own doctor and do your own research and stand up for your rights as a patient~~don't let your MD just dismiss your symptoms. They are real. Two excellent medical websites are the Mayo Clinic (easiest to understand) and Johns Hopkins (more technical). God by each of you and know you are not alone with this disorder.
Been there! Am still there!
I got a back injury (lifting a patient) in 2000. Well, instead of going away like I thought it would, it got worse and worse over the next few days. The rest is history. What had been "somewhat mild" Fibromyalgia, that I could live with without any meds, went through the roof! I have been unable to get out of my own way, ever since. Morning stiffness and pain that makes just walking to the bathroom, a challenge on many mornings, is an everyday, all day, way of life now. I have been tried on all kinds of "promising" new meds, and most of the old ones too. None worked well, and some were horrible. I find that Hydrocodone is the only thing that is of any continuing benefit, without side effects (for me) but, having been a nurse, I know that it is different for each patient.
Of course, the doctors who are jumpy about narcotics, are not keen on it's continued use. Yes, I've been through the disability fiasco, and lost the case more than once.
I have been called all the nasty names like liar and theif. . been told it's in my head, it's from stress, I'm just lazy, etc, etc.
But take heart, you guys. . it IS real! And, you are not alone!
I have no magic ideas either, but I do see an autoimmune connection, as well as a stress factor. Hypothyroidism, allergies, and a previous trauma, perhaps even a history of being abused, all seem to be part of a common picture.
I sure hope a cure is found soon. I want my life back!
lactic acid builds up. I have a really good doctor but I am also a person that is very happy go lucky and will not take I have to accept it. you don't . Try to stay warm at all times when your muscles get cold they will stiffen. I was so active as a kid gymnastics etc I was so active until the day I fell or the chronic fatigue or lymes test were both postive. I was falling alseep at my desk at work in like two seconds doctors said it was the pain I have an extremely high pain tolerance. I believe it may be bacterial that attacks nervous system. I also take probiotics.If I had listened to just my doctors and not did the research that worked for my symptoms I would still be on the prescriptions lidocaine pain patches klonopin for sleep which my liver did not like me not taking that I had bad liver enzymes and withdrawl shakes I had to go off that very slowly imagine what it does to your liver long term. for a little over 6 years. I have taken no medicines except zyrtec and when my allergies are really bad feb and march predinosolne. Try not to take this to many bad effect long term thinning bowels bone loss cancer just a few. I also purchased the microwave aromotherapy pads at one point a hot tub this helps swimming in the summer this all helps cleanse the muscles. massage hurt so bad at first but after a few weeks it was better. now I know just work past the pain. I hope this helps some of you. If I can answer some ways to help just email me. IT's not all in your head. I am very happily married and have always beena happy person so much I used to get in trouble at work for being to friendly and outgoing. My friends say you are happy all the time. How can you be so happy. I am alive doing alot better and I have great kids and a great husband. what more could I want. I know how painful it can be and it wears on you but you must work past it. baby steps.good luck and dont give up,
Thanks again all.
Good luck to you all, and I hope you get somekind of relief, but not the kind that keeps popping into my mind. Thank goodness I still have reasons to resist, for those I thank my Father in Heaven. Say a prayer for yourselves and ask for some peace and comfort and relief of pain, you might be surprised that he listens, if you be patient and there is some reason for our suffering, maybe it's to help someone else get through. Again GOOD FIGHT TO YOU ALL! FEEL BETTER AT LEAST A LITTLE.
PS. Sorry to drag on so long.
In reading Tara's comment, I also had ear problems only mine was a clicking in the ear.
The medications we take can cause ringing or clicking in the ear. I also have fibromyalgia but with exercise I have been able to manage it. After getting a leaflet from the ear doctor, I found out that tinnitus may be caused by some medications such as anti-inflammatories, antibiotics, sedatives, antidepressants, and asperin. After stopping or reducing some of my meds the clicking in my ear stopped. I was taking asperin for pain and also on a antidepressant.
You need to be your own advocate too and not give up. If you don't like your doctor, find someone you do like. If you have a support group in your area, join one. Being with other people with fibromyalgia and being able to discuss how you feel and cope can be a great way to learn how to deal with your illness.
Don't give up even when there are bad days.
It is FABULOUS - and has lots of suggestions for treatments and coping skills, and also has lots of info on the latest research and meds.
They have lots of back issues in combination - example: Exercise, Research, Family and Friends (Getting them to understand), etc. I HIGHLY recommend you spend time at the Website and join the organization so you can receive the monthly newsletter and email alerts.
Tara
I live in Pierson, Florida and would like to get in touch with you and talk more. I had a car accident in 1997 which they say is what caused my Lupus to come out then I got Fibro. then Hypothyroidism.
I have a jacusi whick I used almost everyday. It helps but the pain is still there.
I went on unemployment and the extensions and now on my own. All I get is SS once a month hardly pays for shelter and tele. Meds are expensive too and I use generic but one of the antidepressants doesn't have generic so it's unreal. I went today to another neurologist and he said try a rheumatologist. I already saw the rheumatologist and he was not up on fibromyalgia at all, thought I should see a psychiatrist. I finally went to a pain mgmt dr and have to take narcotics 3 times a day to function a little bit. I too cannot get up in morning is the hardest, then I don't sleep either up every 3 hrs and exhausted in a.m. I am at my wits end as pain day and night is making me so grumpy and kids and grandkids even some friends do not understand that I cannot go galavanting around with them for more than 2 hrs and have to lay down. Wish we could communicate more. Susan from FL
I was fired 2 weeks ago and your story sounds so similar to the people and circumstances I have just experienced. The write ups, lies,and exagerations are overwhelming. In the middle of my stressful job was Asthma, A Fib, Osteoarthritis and Fibromyalgia. Right now I am trying to get insurance as Cobra is out of the question. I am terrified of losing the house. Many calls to attorneys and wonder if it is worth it. I need to work, my kids say retire.
Now the weather is dreadful and I am really in pain. I have pain meds so that is not a problem, however I need to be doing things and I am so tired. Mornings are the worst, I wake up in pain and exhaustion.
Wish we could talk, maybe it would help.
I was only Dx with this after a torn meniscus and knee surgery, but I probably had it before. When the doctor said you have fibromyalgia, my response was that is not really a condition, it is psychosmatic illness per my work with an insurance company. He said read this, get on-line etc. I have learned a lot and now I need to connect with a support group etc. Of course finding a job is also at the top of the list. Good luck to you and all of you reading this. Hope to hear from you.
I am sorry to read your story. I have had similar experiences. I have hit the age 40 mark, and I am noticing a change in my body as well. I take Elavil for my fibromyalgia. I had to change doctors and managed to get one who didn't want to help me. My allergist gave me a name of a new doctor. Saying that the internal medicine doctors have more knowledge.
I took shots for 5 years and have had various times of physical therapy. I know the ear issue for me is the eustachian tubes are defective..My hair feels like it will walk off my head at times....it is so weird. I know that they say to not take naps with fibromyalgia, but sometimes I have to take one anyway. Just stick with your care and ask questions. I have all 18 tender points and the worst ones are in my legs and neck. I get the cold hands thing too. I was concerned about it because of my mother's issues...with her hands...and it is just the fibromyalgia messing with them. I know how you feel I have met quite a few with this syndrome. I know that mine may have been caused by the Mononucleosis I had in my 20's.
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