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Living With Fibromyalgia - Online Support Group

My story in a nut shell......(sorry for the length)

#1

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.

#2

James, it’s so nice to have you here. Welcome. Please post your story on our main boards. Select the Discussions tab on top nav bar and post in Introductions. I certainly want you to receive as much support as you can and Blogs are going to be closing soon.
Hugs,
Laurie

#3

Thank you…i have it posted there now!

#4

I was diagnosed 14 yrs ago. The extremities falling asleep drove me nuts. My hands while driving. Uugg. Also the terrible am pain and stiffness. Bottoms of my feet. This all has been gone for about 3 yrs. It tended to come and go before that. Makes it very difficult to keep spirits up. I was an ICU nurse for 40 yrs. retired and gained 30 #s. Now try exercising HA. I get on regimens and then off. Not good. Swimming is the best for me. I used to run but now have trouble walking. Stationary bike is handy but as I found last vaca. when it was essential to rent a bike to get back to hotel so that I wouldn't miss nephews wedding. Every exercise uses different mm's. I know I have trouble sleeping. Especially after last 8 yrs. on 12 hour night shift. If I get a good sleep, I can usually get the exercise. It is going to be tough to lose. I am 64 now. I have always been active. I have horses that haven't been ridden out of the arena on a trail for nearly a year. I really try to be consistent but this FM is so tough. I have terrible anxiety. I think is related to losing control over so much function. My male physician had FM and was great. He has since retired. I have tried acupuncture, chiropractors, homeopathy,physical therapy. That is me in a nutshell. Hard to rise above anxiety/depression. I have isolated from my friends. I simply cannot plan stuff. It is hard enough to keep dr.'s appointments. And yes my hands and arms have been so numb, I have been known to drop the juice on the way out of the fridge. Bless you. Keep in touch.

#5

Hi James. I am new to the site as well and want to thank you for sharing your story. They don't call it the practice of medicine for nothin'. I have had lower back pain for years. I always thought it was just my back as that issue runs in my family. Then everything started to hurt, especially someone just touching me, again especially on any area of my back. Again, I just thought it was referred pain.

We usually travel for the winter and I noticed that for the last few years, that is miserable as well. This year, we are staying home.

We live in a very small, rural town in Northern Wisconsin. I walk at least twice a day as that eases the pain, at the least the second walk does. And, I am a little concerned with walking outside during the winter due to the ice and snow. (We live in the Lake Superior snow belt so we get a lot of snow).

At one appointment with my primary, she mentioned a pain clinic up here. So, I went. My husband looked at me like I was crazy when I said I had made an appointment. (Like most people who do not suffer with something, he has no frame of reference for the pain I am in). Anyway, I went to the first appointment with what seemed a very caring doc at first. She did an exam and mentioned FM due to the overall soreness. She is also an addiction specialist and told me that studies had shown that narcotics, when used on a long term basis can irritate the nerve endings more so I couldn't take my pain meds anymore. She was amazed that I wasn't addicted. I am not. I can take them or leave them. But when I asked her what I could take, she looked me straight in the eye and said, I don't know. Really? I am in chronic pain and you don't know. For some reason I didn't run out of the door immediately and left their sorry behinds in the dust. However, I hung in there. We also discussed Physical Therapy. I can't do traditional P.T. because the movements make my back worse so she told me about a place that has bathtub warm water and a lift to get me in and out as steps hurt my back as well. I was so excited!!! I ordered a bathing suit as I had lost weight due to the IBS and didn't have one anymore. (Her telling me that she had no idea what I could take was Wall number 1).

About a week and on half later, I went to see the Psychotherapist and he put me on Naltrexone which has helped somewhat. (Today is not a good day as the humidity is very high and we are expecting storms today). I took a Personality Inventory test and we talked about several things. My husband doesn't get it and isn't very supportive; he will get there, it just takes time for him. Of course, my stress level is high, I don't have a lot of support, etc. I also was not sleeping through the night and was exhausted. My primary is out on maternity leave so I can't just call her and discuss some options for helping me sleep and that day I was exhausted and hurting. After he got done telling me what FM is, I asked him for some paperwork to take home. (I had a stroke 10 years ago and my brain doesn't work well at times of stress and being tired, so I knew I wouldn't remember what he told me to explain it to my husband). He told me that this information was so new that there wasn't paperwork on it. Again, really? Then the pain clinic professional staff need to make some for people that want it. Unbelievable. Still I stayed with them as I need the Naltrexone. They have me over a barrel and it irritates me to no end.

Before I left the Psychotherapist that day, he emphatically told me to call him with any questions or concerns. "Don't just hang out there, flapping in the breeze, call me", So I did when I felt like I was going to come apart at the seams due to the exhaustion. (I had gotten to the point where I dreaded going to bed because I knew I was going to lay there most of the night wide awake). I asked him for something to help me sleep and he told me to call my primary. That was Wall #2. I had to wait almost a week to get into see someone else as the docs are all double booked covering for my primary so it took that long to be able to get into see someone, who doesn't know me from Adam. He has been great as he has been working with me, as has the CMA for my primary and the sleep thing is getting better.

I drove an hour to get to my P.T. appointment, towel, bathing suit and water shoes in hand, so excited that I could barely stand it, only to be told by the Physical Therapist that he would consider water therapy but this visit was for evaluation purposes only. I was disappointed but I could live with that. He has to know what is going on with my body to be able to come up with an effective plan of action. He asked me some questions about anal seepage and urine incontinence. Because of the IBS, if I eat something I shouldn't this becomes an issue but I know what I need to not eat to avoid this issue. He continued with his evaluation and just before we were done, he dropped the bomb. He told me he couldn't let me in the pool because of the anal seepage. Now, I get this, however, I would NEVER get into a public pool with that going on. That's just disgusting! When I tried to tell him through my tears that it was situational, he told me that he couldn't let me in the pool. But, please come back because he does have some exercises for me to do. I don't think so. I'm not driving an our one way, wasting my gas and hard earned for exercises that probably won't work anyway. That was Wall #3. I came apart after that.

It is hard to be honest and stand up straight with a medical community that has gone sideways. I am so sorry that the medical community has let you down so hard and so much. Thank you for letting me share my story. I am on the computer intermittently during the day but I am always here if you need to talk. Take care.

#6

i understand i had nerve damage. i also have FM so i don't know which one came first. I .also know that it all stated when i was 13 i'm now 41.

#7

James welcome and for sharing your story. Nice to see other guys on here willing to be open about their health journey. Keep up with ways to help you and as you have found out we have to be our own advocates with FM. Not sure they will every get a real handle on the treatment since all of us have varied issues that are added to the FM. Good Luck to you and always feel free to contact me.
Ron