Well, it has been a very long year and a half. It began last June and took months before I was diagnosed with pudendal neuralgia. I now take Gabapentin 3300mg,Elavil 50, and Valium 20mg to manage that.
Since last Novemeber, I have had one symptom after another:
tendonitis 2xs, ankle tendonitis, costochondritis, bursitis in hips, morning stiffness where my feet joints hurt and my muscles feel like they were wound up in the back of my thighs. some other symptoms, but the worst has been the last 4 months with the pain from the lower half of my body down. I had pain in the buttocks, but it has lessened some. The worst is the 4 months of leg pain 24/7 eminating from the back of my thighs down to my feet. The pain is bad.
I went from dr to dr and all it was treating the various symptoms as they occured. Husband and I went to the Mayo clinc and it was amazing.
They did every possible test. I have had a spine xray ( normal SI joints), MRI ( fibroid I need to speak to gyne about), but mainly 2 pages of bloodwork that checked all: connective tissue diseases: lupus, scleroderma, srjgrones, mixed connective tissue etc, A-ANCA, P-ANCA tests specific scary vasculitides..Lyme disease panel, infection, thyroid, hormones, cholesterol, hdl, ldl, anything you can think of. I was mainly worried of the vasculitis and the autoimmune disease. They did ANA test negative as well. ALL of the bloodwork was negative. They did an EMG/Nerve conduction that was normal, no neuropathy in my legs. Met with the Neurologist no neuro symptoms. The did a vascular ultrasound: normal, no vasculitis.
SOrry this is so long. ... I have Chronic Myofascial Pain Syndrome. My rheumy thinks it could evolve into Fibro. But that was the diagnosis from the Mayo. So now, of course the pain is the same as it was as before we went, but now I know what is causing it. Honestly, I feel like a wind up doll with my legmuscles in the morning they hurt so badly.
The next step is Pain Management, and I am tryig to go through their Pain Managment program. My question is:
If you have Fibro or Myofasical Pain Syndrome what do you do for Pain?
My PCP before my diagnosis who was treating my symptoms, raised my Oxycontin to 40mg. It doesnt do much if anything for this leg pain.

I take hot baths, use heating pads those kind of things, relaxation tapes... but I need more pain control. Ideas please!! I cant have this kind of leg pain.
I stretch too. I use epson salts. I think I am going to ask for Savella and see if that works. Otherwise I may try Cymbalta. please help. thanks jess

jess18 -

I am brand new to this site, but NOT new to Fibromyalgia. Everything you described including Mayo is my experience also. Mine all stared in 2003! I went thru many, many tests, saw many doctors with no real diagnosis right away. All tests cam back negative except my SED rate was pretty high. After about 3 yrs my doc sent to Mayo where they pretty much just validated his diagnosis of Fibromyalgia, CFS anf Chronic daily headaches. I also have bursitis, carpal tunnel in both hands (have had surgery) and many other health issues. Prior to '03 I was healthy, Did not see doctor but maybe once a yr. Hated to take medications. I now see, PCP, Neurologist,
Rheumatologist, Sleep Study Doctor, Orthopeadic doctor, and recently was even sent to see a infectious disease doctor. My life consists of doctor appointments, tests, and medications. The main reason I felt the need to respond to your post is that I was on Cymbalta for 3 years and recently was weaned off. Please, please rethink going on this drug. I can't tell you what is right for you, only my experience. I am on day 17 of withdrawals from cymbalta, and it has been, and continues to be complete emotional and physical HEL#. It is the worst thing I have ever gone thru. Also, while it did help my fibro pain, many of the other symptoms I continued to deal with, I believe now was a result of Cymbalta, not the fibro or CFS. One last thing. My doctor took me off Cymbalta in order to put me on Savella. Seeing how bad I was, needless to say he is not starting the Savella, and probable never will. He cautioned that it was a very new drug with not a lot, if any, long term studies, especially studies on tapering and withdrawals. Just thought I would let you know my experience. I left a lot out. Don't want to go on forever. But feel free to ask any questions. I'll check back.
B

jess18,

I am new to this site. tried to post a reply to you, but reply is not shown. It is very late, but I will post agin tomorrow (well, later today!) Please let me reply before you begin Cymbalta.

Asti

jess18,

well, I see that my posts made it. Didn't realize there was a delay. It was after midnight, so between the insomnia and the continued feeling of dazed and confused, I guess didn't see that the moderators look a things first (which is a GOOD thing). Again, having gone thru very similar things, thought I would let you know you are not alone. Feel free with any questions....
Asti

HI Asti
THank you for replying. Yeah, I just found out I have a large fibroid in the unterus I have to have removed, so yeah, another procedure. :-( The dr said that it would continue to grow until menopause if it was not dealt with.
I am having a very hard time dealing with going through another procedure, then all of the emotions of dealing with this. I was releived it "is not life threatening", and at this point I am tired of hearing that. It IS life altering.
I am reading more and more research being done about Fibro being a neuropathic condition : someone else posted this
http://www.jrheum.com/subscribers/06/04/827-c.html
and that makes me scared too. I asked the Dr at Mayo about that, and he beleives that Fibro and knows that it is a hypersensitivity of nerves in the brain. What I wonder is, and these authors contend that Fibro is Sympathetically maintained pain. I wonder besides incessant burning and all of the other symptoms that go with RSD, then are they saying that the mind can not "turn off the pain". I beleive that is what they are saying, like you turn off the pain when you get cut. If that is the case, why arent drs suggesting sympathetic nerve blocks for treatment of fibro? I totally understand the mechanism as I have had a fricken year to sit at my computer. I wonder when more options will be available.
Does anyone take anything besides Cymbalta, Lyrica or Savella as their main drug beside narcotics?
Again, thank you for replying. I hope ONE day I can get on with my life.

Have you tried Lyrica yet? Also, does icing the pain sites help at all? Have you tried applying cooling pain patches on your legs that contain menthol or camphor? How about applying a capsicum cream to your legs?

Hi Jess. I see in your signature you've been taking Savella???? Has that helped? Thanks!

Thank you for this post. Your story has some similarities to mine. I have pain that started in abdomen. I did some research and thought it might be pudendal nerve. My pain is worse when sitting and it is better when standing and laying down. The nerve pain spread around and it gone to my arms and feet.

I have been to numerous doctors. I am on 900 mg gabepentin per day.

I do have some pain in my ribs. It is more like sore spots than nerve pain. It is like little tender areas. I have thought of going to Mayo Clinic.

I am sorry I can be of much help for your pain. I find myself warming up my wrists and arms on my coffee cup and sometimes on my laptop. It seems like heat helps a little.

I did think it was possible I had fibromyalgia because of the sore spots.

My wife was diagnosed with Fibro, Lupus, Reynaud’s and Degenerative Joint Disease. She lived in chronic pain 24/7 for 12 years & 95% confined to home. She was taking 60mg of methadone daily and 4/600mcg of fentynl via lollipop daily along with 12 other meds.

Our compounding pharmacist told us about something called Low Dose Naltrexone (LDN). Penn State University medical center research Drs Ian Zagon and Patricia McLaughlin discovered that LDN helps with autoimmune disorders. Stanford University did one successful study on fibromyalgia and just completed the second those results should be published soon. Recommended dose is 4.5mg daily. Yes, that’s four point five. Stanford University and Penn State have been doing studies for autoimmune disorders with great success.

LDN boosts and regulates the immune system, increases endorphins, T-cells and slows cell growth. My wife was on Plaquenil to suppress her immune system but we learned that a growing number of physicians now believe that immune system modulation/regulation works best. My wife is living proof that theory is true. She started LDN in July and during the first week all symptoms and pain were gone. Going into her fourth month on LDN she is still holding at 98% improvement with no side effects.

We feel compelled to share with others since this is the first thing that worked ever for my wife. Other autoimmune sufferers should know that there is something that works.

Kenneth

Cymbalta was horrible for me also. I was on it for depression and assumed my FM was getting worse and the awful headaches were just that.
Once off it, I found Cymbalta was making me ill.

ULTRAM, is a pain receptor blocker. It is the one thing out of everything I have tried in my 14 or so years with this illness, which is everything mentioned here plus, that actually works. I take it as needed.