My story in a nutshell.....SORRY FOR THE LENGTH! :-)

Welcome Introductions
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SO SORRY FOR THE LENGTH OF THE POST AND I WON'T DO IT AGAIN.......I JUST WANTED TO SHARE MY STORY IN HOPES OF FINDING SOME SIMILAR EXPERIENCES......

I am a 36 year old male who has been "diagnosed" if you will with FM. For as long as I can remember, I have had a problem with arms, legs, etc. "falling asleep" easily or holding things, but thought nothing of it and passed it off as being normal. Then everything really started in 2008 when I had a car accident, crushed my T-12 vertebrae and spent a month in the hospital, followed by months of physical therapy, and continuous lower back pain (go figure). For years after that it was anxiety meds, antidepressants, and whatever else doctors felt I needed for the feelings that were basically in my head.

I eventually returned to some usual activities (in conjunction with antidepressants and anxiety meds) in fact became healthier than ever! Working out, toning up and gaining muscle, eating better, I felt pretty good, but something was still 'off'. In 2014 I started having severe abdominal pain that led to uncountable tests and my gall bladder being removed; pain still there so was diagnosed with IBS and GERD and put on more medications. A few months ago I started seeing an autoimmune doctor just for the heck of it....my condition stumped him as ALL and I mean EVERY ONE of my blood tests are normal. He said there is no logical reason to be experiencing what I am! (He put me on Naltrexone to see if it would help).

I got SO fed up with all my medications I quit Celexa, Librax, Protonix and now I take Klonopin, Naltrexone, and Lyrica. I couldn't go to the gym because my joints hurt so badly. I would wake up so stiff and sore I could barely move. One morning I woke up and hurt so bad I had to lay back down and couldn't even cover up with a sheet because the feeling of it on my body drove me up a wall!

I went back to my primary and told them everything and they suggested trying Lyrica that it might be FM. Although they haven't officially made that their diagnosis, Lyrica seems to help some (only been on it a week) and I asked for referral to someone that knows and deals with FM so they are putting in referral to Rheumatologist.

I don't know if any of this is similar to others stories and I kinda of hope they tell me its FM and get me on a regimen that works because it is so frustrating going for years bouncing from doctor to doctor with no real answers!

Here are some symptoms I currently experience:

  • Morning Stiffness
  • Weak, painful joints (especially elbows and knees)
  • Back and forth between full body tingling then burning sensations
  • Stiff hands
  • Back and Side pain
  • Stiff neck
  • Hands and feet fall asleep (holding coffee cup makes hand tingle and fall asleep)

If you read through this entire post then I must say 'Thank You'. It means a lot to find people that might have similar experiences that can offer support and guidance. I appreciate you and this site allowing someone like me to open up.

Feel free to ask questions or contact me in any way for any reason.

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James, I can really relate to the hands falling asleep just holding something. I hadn't even realized it could be part of my fibro, since I have a few other problems. I also have the morning stiffness and skin sensitivity.

I'm glad you found this site, it has helped me.

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Hi James,

Welcome and thanks for introducing yourself : ) Glad to meet you! I also experience most of the symptoms you listed, except the falling asleep of hands and feet. I get really bad muscles cramps in my legs and feet though. In addition to Fibro, I have chronic fatigue syndrome and Arthritis in my hips, knees and low back. It sounds like you have been through so much and yet you are still strong and moving forward. I like to use the term "Fibro Warriors", because that is what I feel we all are. Despite our obstacles, we continue to thrive even though we deal with so much pain, exhaustion and multiple medical issues. I hope you find the support, friendship and knowledge you are seeking from this support site. I know I have : )

Sara

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Please do not apologise, James, that is exactly what we are here for. Your symptoms sound like classic Fibro symptoms, ie they are many and diverse! But I am not a Doctor and the right person to diagnose, it would seem, is a rheumotologist. You are doing the right thing, good luck and let us know how you get on.

Take care, Anne

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James, it is very good you are being referred to a rheumatologist as they are the specialists responsible for treating Fibro. They generally start by ruling out diagnoses that mimic Fibro such as MS and RA. Best of luck. You are on the right path!
Hugs,
Laurie

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As far as bloodwork, RA has been ruled out (although I know you cannot always count on blood alone). I don't know that MS has been addressed up to this point. I did forget to mention in my post that I suffered from a Girardia infection in addition to a Intussusception. My autoimmune doc thinks my symptoms could be reactive to the Giradria (viral) infection. I mentioned to him about the Fibro and I thought I would share his response with you:


"Indeed, fibromyalgia can cause many if not all of your symptoms. I find that it clinically causes symptoms suggestive of those that follow viral infections such as mononucleosis. For this reason, I wonder if it is not caused by an as yet undiscovered viral infection. I've always been a little reluctant to give people this label as it isn't felt that this is a curable condition. Further, management can be challenging. I think seeing a rheumatologist is an excellent idea. I would keep in mind that these symptoms may well prove to be reactive to your Giardia infection. If so, they will likely resolve gradually over time."


Not sure what to make of it, but now I just have to wait months to get into a rheumatologist and pray for an early cancellation I can sneak into :-)

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Nice to meet you James!

I just saw a rheumatologist. It took me 3 months to see him! its because we are a new patient, then the appointments become normal. I just got diagnosed with FM about a year ago but have been dealing with it for about 2 or 3. My doc said sleep was the biggest thing that can help with all the symptoms. I am still working on getting a good night sleep every night, but I do notice on the weekends when I can sleep until I wake up :) with the medication he prescribed I feel a lot better. I hope your Doc can help you. I am still in the beginning process as well.

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Hey Butterfly....thanks for the reply! Sleep doesn't seem to be an issue as I can get PLENTY of it, although its not a restful sleep. Last night was the first night I barely got 4 hours. My legs started tingling and couldn't walk it off for the life of me! Like I said, this was the first night I couldn't sleep so I hope this trend doesn't continue or worsen!

ButterflyGrl said:

Nice to meet you James!

I just saw a rheumatologist. It took me 3 months to see him! its because we are a new patient, then the appointments become normal. I just got diagnosed with FM about a year ago but have been dealing with it for about 2 or 3. My doc said sleep was the biggest thing that can help with all the symptoms. I am still working on getting a good night sleep every night, but I do notice on the weekends when I can sleep until I wake up :) with the medication he prescribed I feel a lot better. I hope your Doc can help you. I am still in the beginning process as well.

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Hi James! YES to all of the above, I'm afraid to say! Some days are better than others, though. Seeing a rheumy will help a lot, once you've got a firm diagnosis you can start working on your self-care and treatments so that the symptoms won't be so severe. :)