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I seem to have different problems than you(s)
4 Replies
PEANUT - August 6

Hi.I am a newly diagnosed FM sufferer. But unlike most of you on this forum my biggest problem is not pain or depression. I have been depressed in the past and I don't feel like I am currently depressed. I am frustrated and concerned of course and sometimes show it with tears but I do not believe that I am depressed. I have been on Trazodone and Clonazepam for years to help me relax (muscle spasms) and sleep. I take it every night and most nights I sleep 9 hours. This also sounds unlike most of you. Between having lost weight (60 pounds) exercise, chiropracor and massage therapy I have been able to keep the pain to a tolerable minimum. I do have several of the trigger points and my rheumy has set me up for a sleep clinic on the 23rd as although I seem to be getting enough sleep, he figures I am not getting the right kind. Will see how that turns out. My biggest concern for almost the last 2 years has been my inability to breathe properly which makes me feel light headed, nauseas and finally I get severe bouts of belching. He put me on Cymbalta as treatment for FMS. Now I have major constipation, cannot reach orgasm (I hope that's not too personal) and, despite having little appetite, seem to be gaining weight. I did tell him that my pain was manageable but he figured with proper sleep that my other problems would take care of themselves. Well the Cymbalta alone kept me awake for 4 nights so I went back on the Trazodone and Clonazepam and now am able to sleep again. Needless to say I will likely be getting off of this medication. I have a follow up the first wek of Sept. I am also seeng a doctor at the Lung Health Clinic on the 23rd of this month. I have already had a pulmonary test done and the results were fine so not sure what more he will look at.I have had so much lab work (blood tests and x-rays) done, seen internal medicine docs, heart specialists, infectious disiease specialist, dentist, eye doctor, had a colonoscopy and gastroscopy and finally my gynecologist. I am currently waiting for the blood work to come back for Lyme Disease. I guess what I am saying is that although I have been diagnosed with FMS (and have suspected that I've had it for years now)I seem to have different problems than most of you. Also in late 2009 I had a viral infection and have been sick since then and wonder if that's what brought on these other FMS symptoms. I am so exasperated and feel much appreciation for this forum and the tips and suggestions that I have gotten so far. We are all strangers to one another but have that one thing in common, FMS, as well as 'Two' ears that actually listen and, therefore, care. I have been long winded enough for now. I hold each and everyone of you in my thoughts and prayers and hope that we all can come to have 'better' days than 'bad' days! Take care, and comfort from each other!

 

January - August 7

PEANUT - I don't know why you say you're different..?? Maybe you haven't been on the site long enough. A lot of us have the symptoms you describe. And a lot of us are not depressed (the drug companies are trying to make it sound like we are because they are marketing antidepressants to treat fibro). Everybody gets depressed sometimes, but I don't think fibro is a disease of depression. Although we all get depressed with the run around we get! Pain and sleep are major factors, from what I understand, although everybody seems to be a little different, with different symptoms and different causes behind them. Lots of us sleep way "too much" but we don't get the deep refreshing sleep we need; that's why you're being sent for sleep study - they want to check your brain waves.

There are a lot of fibro experts who think a viral disease may cause symptoms in some of us. The term "fibromyalgia" really refers to a syndrome - and it covers a huge array of symptoms that vary widely among people. There may be 8 or 10 different factors (or more) that result in a person getting fibromyalgia. It just is not well understood yet.

Sounds like you are getting properly screened for different diseases and that's a good thing!! Most people aren't so lucky! I think the problems you refer to are probably side effects from Cymbalta. While it works for some, it is a bad drug for others. Please google "cymbalta" and read the forums about what people are saying. (Just my opinion, but I think it is a horrible drug that has harmed many people. However, some people tolerate it well.) Don't trust the obviously medical websites that don't have a lot of detailed information about all the side effects and interactions. A lot of them are just advertisements. If you can find the website drugs (dot) com, scroll way down to the section that says "for health care professionals." That's where you get the real information about side effects and interactions. You may have to look up some terms - but that's what google is for - or the dictionary. Best thing is to educate yourself about these drugs BEFORE you start taking them. The doctors don't keep all this information in their heads - if you get a prescription, you need to check it out yourself and find out what the side effects are and YOU decide if you want to risk it. If your fibromyalgia is caused by a virus (and it might be), then you might want to try antiviral meds, not antidepressants! Just my opinion, so ask your doctor. If you google "fibromyalgia viral" you will find a lot of information.

Welcome to the forum. You're right, it's a good place to come for comfort and care. : )

 

9na - August 11

Hi Peanut!

I have not been diagnosed yet, but I recognized quite a lot of what you describe! That felt good, actually - not because I want you to have trouble, though... ;)

What we seem to have in common:

- no problem getting sleep, but being worn out and tired after doing nothing. I think it might because our sleep is not of the right 'kind'?

- pain is not my main issue, overall. Well, I have pain somewhere from time to time, and sometimes I feel 'sore' lots of places. But itæs not like I'm always in pain, and I do not wake up feeling especially stiff.

- I've been having breath-issues - some periods it has scared me a lot. I have not been able to draw my breath really good, and it has felt as though my chest has a blockage of some kind.

- nausea - I've had a spell of that recently. Waking up nauseaus, and having periods of nausea all through the day.

- belching/burping - I've had a lot of that for long periods of time.

- I've had tons of bloodwork done (only thing they found was vitamin D deficiency, but my level was fine after 4 months of supplements), I also had a chest x-ray done to check out my chest pains, came out fine.

- I kind of suspect I might have Lyme - I get bitten by ticks real often.. I had one test taken, but that's a cheap test that they use only because of the prize... As far as I've heard it's not any good, and quite a lot of people have other tests done and get diagnosed with lyme...

Well, I really hope we both get some answers soon - and I think it's smart to check every treatable possibility before settling for FMS!

 

cincin - August 28

I'm new to this site also and upon reading numerous posts I was totally amazed to find out the singular problems other FM suffers have had, were the same. When I go back over the years I can pin point these episodes and then they just seemed to all gang up on me at once-nasty.Perhaps the muscle relaxers have something to do with your breathing. Even though it is an involuntary action anything that affects the muscles is bound to manifest something especially as we get older.I think it is important to keep in mind that as we age(unfortunately)our bodies change also.What worked before just doesn't seem to be producing the same results.Do I need to increase or find a different version?Do i need to add or delete something to my diet, change my routine, change my exercise? It's almost like the game board"Clue". Your body is telling you something with subtle hints and you have to figure out the answers.Definetly eating better, exercise, less chemical use,more laughter and lots of patience are the key ingredients to improvement.Most people take their good health for granted, to us it is a 24 hour religion and even then it has pitfalls.It pretty much becomes a personal choice as to how much you are willing to change your lifestyle to benefit you.It's a long hard road but if you dig your heels in you will get there.there is so much more info out there now.Best of luck

 

fibrofriend - September 4

It seems that I've had almost every symptom that FM can produce. I've had sleep problems for a very long time, and then finally about 3 years ago with a whole lot of stressful things going in my life, everything really hit with a vengeance. My sleeping had been worse for probably 2 years prior to this time, and then I guess my body just couldn't handle it all anymore and I was in so much pain all the time, I had to do something. I didn't have a family doctor here, so I went about finding one (and there is quite a shortage of them where I live), and he's not so great. He sent me for x-rays right away, and from the x-ray sheet, which said "polyarticular arthritis", I was able to figure out myself that I had FM.

It then took another 2 years to see a rhuematologist, who took about 1/2 an hour diagnosing me. She told me that exercise is the best thing for it, but that obviously I needed to start getting some proper sleep for this to happen. She prescribed a low dose of Elavil (Amitriptyline)25 mg. and said to start with 1/2 and if I needed to, I could work up to the full 25 mg., and from there I could see my doctor to adjust the dosage, etc. So I started with 1/2, which worked for a while, then it wasn't working as well so I decided to try the full 25 mg.

Well, I didn't really get much time on this dosage to find out how it would work. I know that at first I felt quite groggy in the a.m. and it took a while to clear my head, but it seemed that I was sleeping. My problem is that I have a mild form of a fairly uncommon type of epilepsy that is language induced. When I'm really at my worst for being tired, I get kind of a jerking in my jaw when I talk for a while, and it can be quite embarrassing. My sister was diagnosed with the same thing many years ago, but she actually had some seizures, which I haven't, just the jaw thing.

Low and behold, after a little while on the 25 mg. I was finding the jaw jerking much worse. I couldn't have a conversation without trying to stop this annoying thing from happening every second word. So I went back to 1/2 a tab, which wasn't really working all that well again.

So off to the doctor, and we ended up deciding that I would try 15 mg. Did this for a while and wasn't really noticing enough help with the sleep and now I've been taking 20 mg.

I guess my problem at this point is in trying to figure out how to catch up on years of sleep loss, when I'm still not sleeping enough!

I've been unemployed for 4 years now, and can't picture a job that I can actually do at this point. We desperately need me to have some kind of income, and the more stress there is, the less likely I am capable of getting a job. Like a hamster on a wheel. And yes, there is depression, obviously because of all the stress that just keeps getting worse and worse.

The best I can do is continue to work through the exhaustion and keep doing my exercises and self-massage techniques. I look forward to a time when I'm not so exhausted all the time and can carry on with my life.

Anyway, I'm talking too much here. I hope you all can find the relief you seek to lead to a happier life.

 

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