Frustrated

[Sydney]

I know you will all understand how devastating this condition can be. My FM is total body now. As of a few months ago it is now in my knees as well as back, neck, head, face, etc. I am now barely able to function outside of the house. The knee pain really has added even more difficulty to my ability to walk.
The pain in my lower back and up my entire back is so bad that I must use a driving cart in the store. Now the knee pain has made walking even more difficult. I have tried over 30 meds with no relief.
I am just so frustrated now. How much further can this spread? How much worse can it get?
My body is so sensitive - I can't do PT , acupuncture or anything. The knee pain just got triggered off one day when I walked around my house too much during the day. We were having a party and I should have known better to sit down as much as possible. However, I tried to do too much. Now I am suffering as it is even in my ankles as well.
Just venting!
Frustrated and aching! And NO pain relief from anything Sydney

[BrokenBladder]

I know you will all understand how devastating this condition can be. My FM is total body now. As of a few months ago it is now in my knees as well as back, neck, head, face, etc. I am now barely able to function outside of the house. The knee pain really has added even more difficulty to my ability to walk.
The pain in my lower back and up my entire back is so bad that I must use a driving cart in the store. Now the knee pain has made walking even more difficult. I have tried over 30 meds with no relief.
I am just so frustrated now. How much further can this spread? How much worse can it get?
My body is so sensitive - I can't do PT , acupuncture or anything. The knee pain just got triggered off one day when I walked around my house too much during the day. We were having a party and I should have known better to sit down as much as possible. However, I tried to do too much. Now I am suffering as it is even in my ankles as well.
Just venting!
Frustrated and aching! And NO pain relief from anything Sydney

Sydney I'm so sorry to hear how much pain you're in. I think all of us with FMS would like to have the answers but no one seems to know what to say to us.:eek: I'm unable to do PT or acupuncture either as my entire body seems like it always hurts.
I would like to suggest that you join us in the chronic pain forum as so many people in there have FMS and general chronic pain.
I'm sending you gentle (((((HUGS))))) and hoping you have a pain free day.

[Cry Tears]

Lots of people with this horrid condition have found much releif thru Opiod based pain medications.
Find a pain clinic that my help you in this.
Sadly, I've searched every possible answer to help the pain from FMS.
I was once a VERY healthy athletic person....ate only the best foods possible in my meticulous vegetarian, non oil, no processed foods. Then one day FMS knocked on my door. In one month I was reduced to a rubble.
I've spent thousand$ for naturopath doctors...accupuncture and different "therapies".
Nothing....I mean nothing helped what so ever....not even in the slightest.
The only releif to be found was in pain managment meds....that made all the difference in the world with the muscle pain.
I'm sorry for your pain. As everyone else....wish there was an answer to this heart breaking "conditon". Cheryl

[ODAT]

Sydney,

I had known the unrelenting pain of FMS for 15 years. I too had tried every possible class of medication to treat that pain. I was on a combination of several opiates, anticonvulsants, antidepressants, and muscle relaxants and the pain was still severe. Then antidotal reports started surfacing that Lyrica helped fibro pain. My Neurologist asked me to stop taking all pain medication and switch to Lyrica (a new anticonvulsant at the time). I actually wept in his office because I was afraid that my pain was going to be unbearable without the opiates. To my relief the Lyrica combined with another anticonvulsant (Lamictal) that I was already taking work so much better. One morning I work up and I felt like Pam again for the first time in probably 10 years. That might sound funny if you haven't had such an experience. That was about a year ago. I have had to increase my dose of Lyrica since then and I am now up to max of 300 mg twice a day. We had to fight BC/BS insurance to cover it. They only covered it because I also have lower back problems and Lyrica is approved for siatica pain.

The effectiveness of Lyrica is beginning to wane these days. The pain is once again getting worse. But it is nowhere near what it was last year and I still feel like myself. Pain can make a person lose themselves for awhile but there is always a new solution just around the corner. There are so many meds under clinical trials right now for FMS. Some of these drugs are already on the market. I don't know exactly where you go to find out which drugs are being tested. But find out and get your doctors to try them even before the clinical trials are complete. That's what my Neurologist did with Lyrica which is now in clinical trial for FMS.

The fibromyalgia support group I used to go to always were frustrated with Reumatologists. I've never been to one. I go to a Neurologist who is also a pain specialist. He considers FMS a central nervous system disorder that results from a damaged pain control center in the brain. Maybe that's why he has been effective in treating my pain.

Hope this helps,

Hugs, ;) Pam

[Linda25]

Dear Sydney

((((hugs))))

yes the pain and debilitation of FMS can be mind boggling at times. Just try to take it one day at a time, ask your doctor for help with pain meds and the idea of a support group (even an on-line support group) is very good, it's easy to feel like you are the ONLY person with this "invisible disease" and that makes it all the harder

good luck to you, I hope you find something to ease your suffering

love,
Linda25

[MichelleC]

I go to a Neurologist who is also a pain specialist. He considers FMS a central nervous system disorder that results from a damaged pain control center in the brain. Maybe that's why he has been effective in treating my pain.

Hope this helps,

Hugs, ;) Pam

That's interesting, Pam, that's the exact same way my rheumatologist described it. He says I don't need to see him regularly anymore, that my neuro can handle things. Of course, he said that knowing it's more convenient for me, too, since he (the rheumie) is an hour and fifteen minutes away, and the neuro is only 10 minutes. I feel like I've been lucky in doctors....

Sydney, sorry you are in so much pain right now. Keep trying different things, you never know what might help. My daily pain eased up enough to make living more fun when I started taking Cymbalta, which is an anti-depressant that is also approved for diabetic neuropathy. You are definitely not alone. My rheumatologist says that FMS is the most common complaint they treat.

Michelle

[champgoof]

(_) (_) (_) sydney (_) (_) (_) big marshmellow hugs. i am so sorryto hera that nothing is helping. Neurotin made a big difference in my life. an anti convusant (sp) however somehow it numbs some of the pain receptors lowering the pain a tad. what works for one wont always work for the other one.my best suggetsion is find a pain clinic I had to find a balance of medication, vitamins, diet, ex01ercise and lots of rest to survive.

intersting comment about the neuro and rheumy my rheumy described it the same way as well. one day they will have something to help us more... one day .. we just have to hold up until then.