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Lee2010 - January 22

I'm new to this site and wow, it's so good to find others with FMS! I was diagnosed about 8 months ago after dealing with all kinds of pain for years. I've been to 5 different types of docs and followed many different protocols before being diagnosed. I am one of the fortunate ones in that my Internist has been extremely supportive and is willing to try anything with me to find something that works. I have also found out that the pain receptors in my brain do not accept any kind of pain meds including narcotics, so I don't have a lot of options from the medical community. Right now I'm on 800 mg. of Neurontin (Gabapentin) 3x per day as well as 20 mg. of Norco 3x per day. The Norco for me is like taking an Advil. It helps with the throbbing in my legs, but little else. My doc is hopeful that the Neurontin will kick in eventually and plans to up my dose one more time. I've had no side effects from anything which is pretty typical for me. I have tried Percocet, Hydromorphone, Dilaudid, Tramadol, Fentynol patches and Vicodin 5/500. None of them even touched my pain. My doc even doubled up on my Fentynol patches with no change. My Orthopedic doc said that tolerance to drugs is actually determined at birth, which is now making a lot of sense to me as I look back on my history. I was always very healthy so rarely needed pain meds, but the few times that I did, I was surprised that they didn't work. Now I know why.
My husband and family are completely supportive and work around my needs. I find that I need much more sleep than usual and it takes me a long time to get moving for the day. Evenings are much better for me. I walk with my husband when I feel that I can, but generally pay for it later. I pretty much have all-over body pain with the worst being in my ankle, legs and lower back. My biggest problem is the throbbing in my legs that can wake me up at night. Does anyone else have the throbbing? It is literally driving me crazy! What do you guys do for it?
I realize that I just did a data dump, but it's so good to finally have somewhere to talk to others who have the same issues. And I also realize that no matter how bad things get, there are a lot of you out there who are suffering so much more than I am, and I wish that there was some way to take away everyone's pain.
Thanks for reading and I'm looking forward to sharing thoughts and ideas with you.


Fantod - January 22

Hello Lee2010 - Welcome to the group! Many people with Fibromyalgia (FMS) seem to have difficulty with medication. In my case, I'm highly sensitive to drugs and must treat all of them like cyanide. I either don't tolerate them at all or can only take a minimal dose. Just about as annoying as your situation.

I have a lot of leg pain but mine is largely due to degenerative disc disease. I also have bursitis in both hips which doesn't help. Have you considered seeing a chronic pain specialist? I have both a rheumotologist and a chronic pain specialist. The latter was responsible for figuring out that my back was contributing to my leg problems. You can call your local hospital physician referral service and ask them for a recommendation. The pain specialist may have some other ideas on how to allievate your symptoms or get around your apparent impervious nature to medication.

You are extremely fortunate that your family is supportive. Many people with FMS have a lot of trouble with friends and family being unwilling or unable to acknowledge that FMS is a real illness.

Take some time to read all of the information in the blue boxes on the lefthand side of this page. There is a lot of good information on this site - probably the best on the Internet. We are all here to help. You are not alone. Take care and God Bless.


Lee2010 - January 22

Hi Fantod - Thank you so much for your post. I, too, have a rheumotologist and a pain specialist. My pain specialist sent me for an epidural shot which got rid of my hip pain for about three months. I have a bulge in one of my discs and some other spinal problems which were resulting in my hip pain. Add in the FMS, and as you know, it just doesn't get better. I have also been to an acupuncturist. The acupuncture sessions also included deep tissue massage which only caused me more pain. I stayed with it for a couple of months going twice a week, but I never had even a moment of relief.
My internist mentioned to me that FMS can be triggered by physical and/or emotional stress. My husband almost died and had major surgery and I broke the same ankle twice and had surgery on it to remove shattered bone and a chip that was jammed in a joint. My surgery and my husband's were within 8 months of each other. I guess that could have triggered it. I'm at a point of resignation that this is a way of life that I'm going to have to get used to and I'm just glad to be alive with my husband to face each day together. I think that a positive attitude toward this illness can go a long way in how you deal with it day to day. This forum is a great way to let go of frustrations and know that you're not alone. I'm actually grateful that I have this diagnosis because if I was still undiagnosed, I'd be thinking the worst. Knowing that this isn't life-threatening makes it easier to face each day.
Thank you and hang in there. It's nice to know that we're all in this together and not alone.


Noca - January 22

Have you tried Actiq for breakthru pain? Its Fentanly in a lolipop, basically the strongest pain killer there is thats not IV. The doses go up to 1600mcg, surely some dose would touch your pain.


Lee2010 - January 22

Thanks Noca! I've never heard of Actiq so will definitely talk to my doc about it. I appreciate the help.


Noca - January 23

Actiq isnt avialable in Canada but since you say you've tried Vicoden, you must be in the US.

Another thing is... Actiq is EXTREMELY expensive, you wont be able to afford it without insurance.


axxie - January 23

Just a note, vicoden is given in Canada and so is actiq, but only given in extreme cases and depending in which province you are in. Most doctors will not prescribe actiq, fear that they maybe reprimanded and also the interaction of suppression of breathing can develop long term problems with your lungs.


Noca - January 23

Hydrocodone is available in Canada but not in the form of Vicoden(Hydrocodone mixed with acetaminophen). And Actiq is NOT available in Canada according to my 2008 CPS book or pharmacy. However Fentanyl IV and patches are available but you cant really use IV at home nor patches for breakthru pain.



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