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A hello and some questions from a new member
5 Replies
Digimer - February 3

Hi all!

I've recently been diagnosed with "fibromyalgia-type symptoms". I was hoping to share my story and see how it matches up to you guys. I hope it's not too long! :)

I've been "sick" with, something, since I was ten. In the last few months I've *finally* gotten test results that weren't just "abnormal but nothing definitive". Specifically, a muscle specialist in Hamilton, ON (Canada) said that the muscles in my legs are in the 1% tightest he'd ever seen. He sent me to a sleep clinic who said that I have an average of 16.1 "arousals" an hour (periods where my brain nearly wakes up). I never noticed this, beyond always being tired which I attributed to my thus unknown illness.

Anyway, both the muscle specialist and the sleep doctor said that I have "fibromyalgia type symptoms". The muscle specialist, when he suggested to me that I go to a sleep clinic, told me of a fairly recent study where they took perfectly healthy med students and woke them up whenever they got into REM sleep. After a short time they developed the same symptoms associated with FMS. Now with the results from the sleep clinic I have *finally* been able to start thinking about treatment.

My symptoms:

Mainly muscle pain and muscle weakness. During my bad spells I can get bad enough that I need my boyfriend to help me walk or get up the stairs. When I am okay though, I've been able to bike and rollerblade for hours on end.

I do have cognitive problems, too. First and foremost is always being tired (I was told I had CFS as a child, which I never believed). I have (many) moments of what sounds exactly like FibroFog and often use the wrong words or just plain forget what I am doing. This has happened a couple times going down stairs where I nearly fell (had to jump because I'd forget where my feet were). I'm always driving my b/f crazy asking him if he say this or that. I've gotten a reputation for how quickly and thoroughly I can lose something that I had moments before.

I also get occasional stabbing electrical pains in my chest and (sometimes) my arms. When the chest pains started a couple of years ago I was in the ER on a heart monitor and I could see the monitor as I had the pains and there was nothing odd. The doc was there too, and figured that the pain was probably coming from my chest/diaphram but couldn't diagnose further. These stabbing pains often come in waves, lasting for just a moment and coming every few minutes.

One that is very random is my back muscles randomly start spasming. It was bad enough once that I went to the ER and the doc there could see my muscles spasming but didn't have a clue how to stop it. She told me to take robaxacet (muscle relaxant) when it happened from now on, but it is losing it's effectiveness. Now when I feel the first twinges of spams I just stop everything a lay down if I at all can. Generally if I catch it early enough and can just lay there for about ten minutes the spasms go away. Otherwise if they go all the way off they can spasm almost non-stop for a long time. The pain afterwards is pretty bad and I am usually stuck in bed for a few days after.

The last one, and often the one that worries me the most, is that I have these very random attacks where it feels like the wind is knocked out of me and I have a hard time breathing. These usually only last a moment and, like the stabby pains, can often come in waves every few minutes.

So a few questions;

1) How does my story compare to yours?

2) For those with the sleep disturbances, have you found anything that helps? My doctor wants to put me on amitriptyline on Monday (10-25mg/day) which is supposed to help. Has this helped anyone?

3) How do most people feel about the diagnosis of FMS? From what I gather from my docs, it sounds more like a category of symptoms more than a diagnosis in and of itself.

4) Has anyone found any symptom-specific relief in any way that you think might help with my symptoms?

5) Do I talk on too much? :)

Thanks all for your time!

Digimer

 

Digimer - February 3

Sorry! I guess the line wrapping didn't work.<br><br>
Maybe html works? :)

 

yannie - February 3

if you read thru the forum you'll find many of us have fibro that can present different symptoms - some of which you have. I just take it day by day and try to co-exist with the current curves it throws me. I take clonazepam at nite to help me sleep and get relief from the leg cramping and it helps my hands too. Vit B12 sublingual under the tongue gives me energy and helps the numbness and burning..I suggest you always check with your dr. on serious symptoms that may be a treatable illness that needs medical attention. Fibro mimics many illnesses and it's hard to know what's fibro and when its cardiac or neuro. Find a doctor experienced in treating fibro ...exercise, physical therapy and some rheumatologists are very helpful - good luck and I hope you find relief...it's not curable as of this date but you can have some control over fibro and enjoy each day in a positive way - have a thorough physical which will give your doctors a baseline to detect changes. Keep in touch and let us know how you are doing.

 

JJ1 - February 3

Yes, your symptoms sound very similar, just the early onset is much different as I did not get mine until I was in my 40s (which I am still in). I take amytriptyline and it helped me immensely. It helps your body get into a deep restful sleep at night. A drawback is that many people suffer weight gain from taking it but that did not happen to meet. My weight gain was at the onset of my symptoms and had leveled off by the time I started the meds. Amytriptyline is the only med I take for fibromyalgia. It did nothing for the fibrofog or difficulty with focus and concentration. What it did help was the pains that I was getting -- those are much more rare and infrequent now. I think even the diagnosis itself can be a bit settling -- even though fibromyalgia is no picnic, there are other things with similar symptoms that are usually ruled out with the diagnosis that can be much worse. And no, you don't talk to much, but a big downside to this forum is that it does not allow any formatting of posts so you can't break things up with paragraphs or numbered lists. Welcome and hope things start going better for you. Sounds like you have a supportive boyfriend and that is a blessing.

 

teresat - February 3

Digimer, I can sure feel for you!! My symptoms started with chest pain about 5 yrs ago, at least that was the first symptom to send me to the ER. Like you they didn't find any heart problems. The DRs did a cardiac cath on me because my father had his first heart attack when he was my age. About a yr ago I developed the sleeping problems. The DR put me on amitriptyline, but it had the opposite reaction with me! It was the most HORRIBLE week of my life!! I could NOT sleep AT ALL! For me it was as if I had taking an amphetamine!! I have tried many antidepressants till I finally found on that works. It is Cymbalta. I take it at night with a trazadone & I have been sleeping MUCH better! As far as the DX of FMS, I would suggest that you see a rheumatologist. There are many other illnesses that have the same symptoms of FMS. You need to see a specialist to rule out these other illnesses before you can be DX with FMS. This last year I was have pains in my rt side, lower rib cage SO BAD & it wouldn't go away, that my DR started testing me for everything. When he couldn't find anything, he referred me to a rheumatologist. he DX me with lupus & FMS after doing MORE TESTS! I have been lucky that I have not experienced the FIBRO FOG that many others have. I have instead developed a type of dyslexia. I turn numbers & letters around. This is partically bad for me since I am a bookkeeper, LOL! I found your statement....<"they took perfectly healthy med students and woke them up whenever they got into REM sleep. After a short time they developed the same symptoms associated with FMS.".>....to be very interesting! Do you have anymore material on this or is there a website that I can read more on this subject? Well this is quiet a lengthy post also, but I hope that I have said something that will help!! I am looking forward to reading more from you & WELCOME to the site!!!!!!

 

BrandyO - February 4

Welcome Digimer. Sorry that you have been suffering. I have had fibro for over 40 years now. I have bad days but also some not so bad days. Try to keep your spirits up. You'll get a lot of useful info on here so keep coming back. Good luck... Brandy

 

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