Guessing Game

Bones, joints and muscles
1

Hi everyone

I would greatly appreciate it if someone out there could let me know if they believe I have Fibromyalgia.

I am a 57 year old male. I have always kept extremely physically fit, and I still try to play squash twice a week. However, I am in severe pain practically all the time. Four years ago I had major back surgery. I had c5+6 and c6+7 removed and replaced wth titanium discs. The Surgeon told me afterwards that although the procedure went well, I had very weak bones. I receive Physio once a week. I have injections in my knees, facid joints and shoulders every 2-3 months, and I have injections in my hips every two years. All this just to keep mobile. I sleep terribly with constant cramps in my calfs and feet, and I am lucky if I get 4-5 hours on a good night. I have terrible tension headaches from the top of my neck to my head. I suffer badly with stomach problems and I often go days without going to the loo. I suffered a prolapsed disc last year, and I cannot go one single day without stiffness in my lower back, neck, knees and practically all over. I actually slaver from my mouth at times when in bed, and I feel irritable and depressed for the vast majority of the time. I feel as if I am trapped in a surreal world where no-one understands. Some people might say it is the extreme excercise that is giving me the problems, but I am around 50% worse if I cannot make a session. I have tried Celibrex, Arthrotec. Tramacet and a host of other strong medication. Even as I am writing this I feel as if I could just fall asleep. Some days I feel absolutely wretched and feel as if I just want to end it all (although I have never took this any further than just thought). My GP does not seem to listen. He just sits there with an inane grin on his face. He dismissed my thoughts of Fibromyalgia and just gave me new painkillers. My x-rays show severe arthritis in major joints, but it is all the associated symptoms as well.

Any ideas or advice would be greatly appreciated.

Thank You. 

2

Hi Hugh, well I would definitely demand your GP refer you for a proper diagnosis. You have several similar symptoms to myself and I have had a diagnosis of fibromyalgia. However, I am not completely certain that it is a correct diagnosis as there is no simple test to prove, it is a clinical diagnosis. Yes, depression and widespread pain are definite symptoms, but all they do with this diagnosis is treat individual symptoms anyway, there is nothing that has much of an effect that works for everyone. My colleague believes that yeast overgrowth is the cause and we both now take caprylic acid. She thinks it is working or her, as well as eliminating any yeast products and sugar. Unfortunately I have not got around to changing my diet yet, but do intend to soon. It sounds like you have osteoarthritis and osteoporosis too so they can cause a lot of your symptoms. Have you asked for liquid morphine? I think its the only thing that works for me most of the time, I also take tramadol and co-codamol and have recently started on hemp seed oil but overall, no significant benefits have been noted up to now. I have pain every day in my hips, lower back and legs, most days in my hands and feet and one or two days a week in my neck. Sleeping is dreadful as the pain in my hips wakes me up constantly as well as my arms, hands an legs going totally numb, my hands and arms have done this for several years but the leg numbness is totally new at night, although I do get occasional numbness during the day in isolated spots. Let me know how you go.

Sharon 

3

Very sorry to hear of UR pain. It all sneaks up on us.. I tried to ignore it as long as possible. It finally caught up me where I had to make many adjustments in my life.

i have two fused vert abreast lower back upper back and scoliosis , spurs on all discs and degenerative arthritis. 

Then down to the hips both have been replaced. All my joints are arthritic and last year my hand started curling uo and then the other from Dupreytrends contracture. 

Almost to much information. I'll stop there. I too alway athletic. Rode horse in endurance racing since a child. Also motorcycles bad accident , loved skiing all recreation activities. 

Once upon a time there was no name for my pain I was even told to my mind is thinking I feel pain but it's not real. Then the past few years a name was given to this catch all symptoms. It is now referred To as FM .... 

No pain meds have helped. PT has given me many ways to build core muscles and keep strong to support bones. Once those atrophy it is really hard work to ge muscle back. Eat right etc.. Also have learned to stop doing activities the cause a flare.

take time and use mindfulness therapy when I do everything. 

Finging a way to cope and and slow down pace myself for rest periods has helped me the most.

its different for everyone. Once I learned after hip joint replacement that I have tine micro tears in both ligaments down to the ankle in both legs I ok grea car to rest and heal. 

I hope u find what works for u. U will be back to UR new normal once u find UR 85% of wha UR were is better than the Trying for 100% where u were before FM.

its adjusting to a different set of skills while coping with the pain. Ask for PT for UR set of pain issues. They will teach movement and give u a routine to cope with FM.

i have googled what FM is and also looked for many other ways to cope with this unseen disease. What works for one may not someone else. 

I hope that u will find what gives u strength and peace with FM.

healing prayers sent UR way.

Peace, Luv & Laughter

H4C

4

Hi  Sharon..

reading UR mail sounds so familiar. I am with u on so many levels.

i am never really sure if FM is still a catch all name. My rheumy seems to agree that there are so many theories, causes and fixed  on the internet. And not one simple blood test for ID . Everyone with wide spread pain is lumped into FM. My mom had the same symptoms from A-Z 35-40 yrs ago.

i thinks I can only take one day at a time and always looking for ways to adjust and cope to make lik easier. 

Depression and insomnia seem to be the hardest for me to cope with.  I would do anything for a good nights sleep. 

My hip implants are a big issue as well as many itisis... and autoimmune disease psoriasis and psoriatic arthritis.

I have just accepted the thing I can do & let go of the thing I can't. I don't want to grieve my old life but look foreword to today. So with all the numbness, tingles and pain it always something....

My best coping tool is my dogs they bring a huge comfort level to my life every day... 

Peace, Luv & Laughter

 

5

I am the same way.  I am very active ... a skier , love to garden. It all came to a screeching halt a couple of years ago. I continue to excersise. I usually go by how I feel. Some weeks I am a wreck and can't do anything. I have been practicing yoga for a number of years and find that it is one of the only things I should do more of. It really helps with arthritis and FM and it is something everyone can do and can take it home with you. 

6

I also have osteoarthritis. So it's a double whammy . I do go to a rheumatologist and she is very good. Find some one who understands and will support you. 

7

i agree, every other person you speak to seems to have been diagnosed with fibro these days. Out of 9 staff in our place 3of us have been told we have it, all with different symptoms! I am the only one that has been off for months though as I just cant move without severe pain.fortunately I have just received PIP payments so I don't have to struggle working now. It has taken years to get it though and I have struggled so much but now I know I can spend my dogs last few months with her all day every day, we just found out she has cancer so we don't know how long she has. Taking her away on the canal next week, she just loves being on the water, she just watches it all day and appears incredibly content. I lovemy dog and cats so much and yes, they do help enormously. The unconditional love you get from them is amazing and gets me through lots of bad times! X

8

Hello, you could have Fibromyalgia and ME/CFS which I have.  Some specialists consider it to be the same condition but from someone who actually has both - they are not!  To manage Fibromyalgia in my experience you have to keep active.  You stop still = you lock up.  To manage ME (CFS is a sill name!) you have to pace yourself and rest.  I diagonsed the Fibro myself from the internet, went to the doctors they said it sounds like it, went to hospital and they confirmed yes. Then the tiredness and memory started to go. By this time I had a new doctor because I asked for one who understood Fibro.  She thought ME, I have just seen ME specialists they have confirmed ME and actually think I have had both since I was about 14yrs old (I am now in my 30's).  I would recommend you change doctor to one who understands Fibro (it is a specialism and not all doctors understand it - and want to understand it). My thoughts are that maybe you need to carry on your sport but try going once a week and then walking on the other.  That is intensive physical repair you keep having. Maybe an active balance that's not so rough on the body could be found? Just my thoughts. Badger

9

i agree that if you cancarry on doing any sports, do it! Once you stop itgets much worse. I have been practically bed bound for 8 months now now and find that I cannot walk far at all whereas I used to manage long walks every day, despite being in pain everywhere else, the walking kept me going. Now I am so tired all the time, I actually fell asleep right after breakfast yesterday until tea time then as normal at night. I do wake a lot though cos of hip pain, and then when i finally get offf again my cat wants kisses! Lol well I dont mind him waking me, he is adorable and the sound of him purring right by my face is actually adorable and welcome.