Question for Fibromyalgia sufferers?

Question

This condition wasnt diagnosed until fairly recently in Medical History so we are kind of the "guinea pigs" when it comes to diagnosis (existence of specific trigger points) management and prognosis.

Are any of you been finding that your FM becomes more debilitating as you become older?

I know we have all been told it isnt "progessive" however I wonder if the symptoms of the disorder are more debilitating due to the natural aging process? Has joint pain increased? Have you developed less endurance?

There has been some limited research on accelerated aging in people suffering from certain neurological disorders, and/or connective tissue disorders, and/or certain orthopaedic conditions.

There is also evidence that untreated depression can lead to dementia and alzheimers.

How much of a factor is reactive depression for those of you who have FM? Are you on medication for the depression and how is that working for you?

Not real?I am getting REALLY tired of hearing this. There are specific diagnosis criteria for Fibromyalgia.
Quote: Doctors who treat large numbers of fibromyalgia patients report that the majority of patients say that their fibromyalgia was caused by an injury. In my own private practice, I analyzed patients with the diagnosis of fibromyalgia to determine the cause. From 1990 to 1995, 2,000 records of fibromyalgia patients were reviewed. Of those, 65% reported the onset of their symptoms of fibromyalgia after a traumatic event. Of this group, 52% of them were involved in a motor vehicle accident, 31% had work injuries, and the remaining 17% had another type of trauma; included in this category were sports injuries, recreational injuries, fractures, surgical procedures, head injuries and pregnancy. Of the post-traumatic patients involved in motor vehicle accidents, whiplash injury was the most common type of trauma. FMS was diagnosed using the College of Rheumatology 1990 criteria

sorry for any misunderstanding that text that referred to "I" have analyzed patients" was a quote from a doctor - I am not a physician, I always wanted to be a doctor, but never had the money to become one. It wasnt my intentiton to mislead anyone. I am very interested in medicine so I spend a lot of time researching - and I have FMS - I feel "older" than I am, somedays I feel as if I am about 90 and move as if I am.
I started an FMS suppport group some years back and we felt gingko was helping with the weepy blue feeling but now I am not so sure that it is effective.

It is definitely my opinion that seeing as so many FMS people are finding it more deilitating as they age this has to be recognized by the medical field. (MY God it took me 3 mins to figure out how to word that sentence)

There is a doctor in the US that has more or less spear headed the research of and recognition of FMS, and as soon as I can remember his name (LOL) I am going to contact him, with my experiences and your comments and urge him to do further research on FMS and aging.

There are so many good answers and so much information given here that I will never be able to pick a good answer. (silly system IMO) Thank you!

My doctor gave me anti-depressants, I have resisted taking them until now. I was so wired all night I couldnt sleep and I was exhausted when I went to bed. So much for that idea - the anti-depressant is Apo-citalopram aka Celexa in the US

http://www.immunesupport.com/fibromyalgia-treatment.htm

I keep adding more details, but I am really pleased with the responses & want to empathize. I have emailed Dr Rosenbaum. I hope he does read this thread !

I have eye problems, my eyes feel blurry all the time, dry - I use eye drops that are natural tears - I have problems adjusting quickly from near to far vision.

Like all of you I NEVER wake up thinking "I feel great !" Ready to take on the world.

There have been times I am so locked up I have had to roll/fall out of bed onto the floor, then work my way up from kneeling to standing. Its like rigor mortis set in during the night. :-(

I dont remember what its like to walk across a room or anywhere without assessing if its worth it and how to move - nothing "flows" naturally.

My memory is SO bad I am scared I might be developing early alzheimers or dementia. I am always saying "did I already say that?"

Typicalnotme conditions as yours could be considered "injuries" just as other disabilities/conditions can be IMO

Answer 1

Fibromyalgia remains a catch all term for doctors who really don't know what is going on, but recognize that something is going on. The second problem is that the symptoms can vary from person to person.

This covers Arthritis too. There are many types. And again they may be part of Fibromyalgia.

What is the cause? I rather suspect that the course of treatment is wrong. I believe that many FM sufferers should be treated for a long time with antibiotics the same antibiotics method to treat Lyme disease.

Everyone assumes that Lyme disease only comes by ticks but I think there may be more than one vector. Almost four years ago I worked at a picnic ground in Northern Ontario. Every person who visited that area in the summer was healthy. Many of these people have subsequently come down with FM or Depression both... and/or arthritis.

I also notice that many FM and arthritis sufferers were very active outdoors people before the onset of their disease. But doctors appear to reject the Lyme culprit because they assume that mites/ticks are the only vector.

I think that one vector is mosquitoes but that they are only carriers for a short period like a day. The big key is that there is deer naturally existing in the immediate and local habitat.

Answer 2

I agree with you, although I've been in treatment for over 7 years now my symptoms are worse then ever. I have dealt with so much guilt for years because I would be told by my doctors that if I were following their instructions and doing what I was supposed to do I would feel better, one doctor even treated me as if I had done something wrong, when I would tell him his treatment wasn't working he would say that every other patient he put on it got better and then just stare at me as if I was supposed to have a response to that, like he was scolding me!

I also hear all the time how fibro isn't debilitating however I can't tell you how many jobs i've lost due to missing work when i'm in too much pain or having a migraine!

Depression has also definitely been a factor in my fibro, its a dangerous circle, the pain causes the depression, however if not treated the depression causes much more pain... I found zoloft worked REALLY well for my depression and have been on that for years now. I also work very hard to not let things upset me, not worth the pain. Hubby thinks I don't care about things and gets uptight, doesn't understand that just because I dont "react" to the fact I lost the cell phone doesn't mean I don't "care" (and I lost the cell phone because I couldn't remember leaving it on top of the car....) memory loss?? oh yeah, ive heard of that before!! LOL

Answer 3

I have had CFS for about 15 years, and was diagnosed as having Fibromyalgia in 2003.

I have found that the Fibromyalgia is worse in mid winter and summer. I can not stand the heat or the cold. Its winter in Australia at the moment and Victoria has had some shocking frost in the past week, making life hell.

Depression I believe is secondary to both conditions, due to the fact the pain and fatigue is and does make our life very difficult to function at times, thus it is a reactive depression.

I take Neurontin which is a neuropathic drug which is also used to treat Epilepsy. I also take Stilnox occasionally for sleep, and vitamin D due to unusually low levels. The vitamin D helps a little with the depression and the Neurontin settles the pain levels a little making sleep possible.

Due to major drug, food and chemical allergies I have had trouble finding a suitable anti-depressant.

I have found that keeping up my fluids and avoiding coffee, alcohol, junk foods, preservatives etc helps. Eating a healthy balanced diet is important to keep vital nutrient levels even with in the body.

I hope that as I get older that I do not become to debilitated with the FM or CFS. Its bad enough trying to function through winter and summer as it is.

Edit:
Thinking about it over the last two years new symptoms have occurred and it seems the doctors are at a loss for why. But they are quick to put it down to the CFS/FM, so one has to wonder.

Answer 4

Are you a physician or a psychologist? You did mention your own private practice.

I was diagnosed by my description of my problems with sore muscles, and joint pain and sensitivity to cold ( I wear a sweater at 75 degrees) and the "18 point test".
I was prescribed:
a muscle relaxant, cyclobenzaprene 10mg twice a day for muscle spasms;
a pain medication, Propoxy-N/APAP100-650 TA, every six hours as needed.
I really find that this is NOT helping, and I find that taking the Propoxy in the evening keeps me awake at night.

I also have been prescribed:
Temazepam 15mg for help with sleep.
Tramadol HCL50mg 1 every six hours as needed.
to be taken with Acetaminophen 500.

I also have arthritis, I have been thru the depression and took everything from Elavil, to Pamelor, to Zoloft, Depakote, wellbutrin, and nothing really works.

What treatment has been developed to help with this?

I have applied for disability twice and have been denied.
As it is, I can only work part time due to my health problems.
I live alone and am desperately trying to support myself on very meager income.....i.e. below $800 a month.

When I get home from work I am so tired (even though I have an easy non stressful non tiring type of job) that I have to go to bed.

When I wake up in the morning I am so stiff and sore, and I feel just as tired as I did when I went to bed!! It takes all I can do to just get ready for work.

I have a problem with "noun" words. I can't seem to remember the name of something a lot of times. (so I say "thingy" or "wha cha call it" a lot)

It's an awful situation. Any suggestions??????

Answer 5

I'm 32 years old. I was diagnosed around age 18 and was probably showing symptoms at 12. I have not found FM to be progressive. In fact, I'm way healthier now than I was at the beginning. Part of it is probably lifestyle improvements, and part is I'm no longer under the stresses from growing.

I have been treated for depression, but I saw no real correspondance to my FM pain and my depression.

I am on an anti-depressant for my FM called Elavil, which has worked absolute wonders. I wouldn't be able to hold down a job without it, and I live relatively actively with it.

Answer 6

I was diagnosed in '97 and I have developed more symptoms with the years. My fibro is not related to an injury. I do not believe that fibro is the result of an injury but that those of us with fibro are born with the defective gene and with time develope more symptoms. It could be that an injury will weaken our bodies enough for the fibro to progress. Most if not all of us can look back on our lives and see the signs of fibro. I have been taking Guaifenesin for over 8 yrs. for my fibro. It is not a cure but does help tremendously. I was able to stop taking prescription pain meds within 3 yrs of starting guai. One can go through phases of different symptoms and or flares. I was depressed for a while when it hit me really hard. I was a very physically active person and fibro changed that. That is hard to accept but I have. There are days that I get depressed over having fibro but I do not have a need for anti depressants. I can function pretty well as long as I do not have to physically exert myself and can get rest when needed. One new symptom that I have is an increase in blurry vision (even with new glasses) and dry burning eyes.

Answer 7

Yes, I was diagnosed in 2001, and mine seems to be worse, but I also have neurofibromotosis, in which tumors, called neuroma's grow all over the body, and inside on the perphial nerves. I don't take any anti depressants, cuz it would interfere with the other meds I am taking, like fentanyl, oxycodone, soma, tianzadine, and Valium on a regular basis, and I am still in pain most of the time, so the Dr can't decide if its from the fibromyalgia or the NF.

Answer 8

So far it has been getting worse in the fibro fog area.

I tried using guaifenisen (spelling) which seemed to help at first, but after 2 or 3 years I didn't get any better.

I tried using http://www.helenfoundation.com/ which is about $4,000 U.S. dollars. That does a food allergy test and puts you on small doses of hydrocortisone. They stay with you for 6 months, mapping your pain to help you figure out when you have flares in order to stop them. I'd recommend it as it helped my pain go down 60%.

The biggest problem was stress, and when I had to leave work on long term disability, it was like night and day. I don't hurt every day.

Other than that, I do the usual: muscle relaxers, pain killers, sleep aids, anxiety pills and anti-depressants.

Answer 9

It's been about 8 years now since I've had it and I do not feel it is progressive in my case, although I am not quite sure as I have other issues (arthritis & early onset parkinson's disease). It complicates things as some symptoms are similar to each other. Recently, within the past few years, the pain has been pretty baseline.

Many times I was prescribed SSRIs for my fibromyalgia, which never helped any with the pain. Now, I am unable to take SSRIs as it interferes greatly with the parkinson's disease.

Answer 10

I've had symptoms of Fibro for nearly 40 years. Diagnosed in 1989. The Depression didn't start until sometime around 1993. I have been on anti-Ds since then.

I am co-owner of Yahoo's largest Fibro support group with over 2,600 members. It has been our experience with most of our members that Fibro is, in fact, progressive. It certainly has been for me.

I don't consider myself to be old at 52 so I don't feel that aging is that big a factor. Plus, many of our younger members report worsening of their symptoms, increased severity and length of flares, and decrease in their ability to function.

Since it is relatively new to medical science and much of the research is ongoing it may take a while for knowledge to catch up to our experiences.

If you are interested check out our group:
http://health.groups.yahoo.com/group/Fibromyalgia-CFS/?yguid=184656699