anyone out there with auto-immune/chronic pain issues before dx?

Katie 33 - I continue to do well on chemo, I have SE but it is they are like the problems I've been having for years just a little more intense.  Most of my problems are with my sotmach and fatigue.   I'm on day 10, so I am suppose to feel better very day until my next chemo.  The only thing is my hair will stat falling out next week.

barbe1958 - I went to the pain management dr Friday.  It was interesting, he went right for the pressure points for fibro, which I past with flying colors, he made me fall over in pain when he hit the neck pressure points.  So he is the third dr to check for this (the others just said not quite enough pressure pain and did nothing else) he is running a bunch of blood test to follow through with the pressure point test.  I am encouraged that I may get a treatment program for my chronic pain and stead of telling me how "healthy" I am.  I can't do any shots (nerve blocks) until chemo is finished.  He did give me Lyrica, I need to check with my onco first before I take it.  Do you know anyone who has taken it?  

barbe- How long did it take for the Lyrica to work for you?  I was on it for about 6 weeks but didn't see any improvement in pain levels at all so stopped taking it.  

When I'm in a flare, I have to add Hydromorphon to this mix, but daily I take:

Celexa for the pain from FM

Arthrotech for the pain from OA

Oxycontin morning and night and for breakthrough pain for what the other 2 don't catch it all

I also take a couple heart meds.

I use Immovane when I just can't sleep.

Barry, welcome to this thread! I don't think you've posted here before...

My Fibromyalgia is similar to your RSD. In fact, when I first saw you post, I Googled RSD. My feet used to change colour, but not anymore. My right foot would turn burgundy/black. It was phenomenal!! Doesn't do that anymore...

With my FM, I can tolerate air, but at times during a bad flare, I can't even tolerate a sheet on me in bed! Because I have no outward signs of this disease, people have negated it and denied it to my face. They are no longer in my life.

FM is an overabundance of substance P (same as RSD) and gets worse with over-stimulation. I would be a basket case at Disney Land for instance. I was afraid of my double mast but it was surprisingly not as painful as expected. There are no muscles, bone or organs involved, so as my surgeon says, it's just a deep tissue wound (paper cut!!). I tolerated it very well, but didn't have recon as I didin't want to push my luck. On the other hand, my hysterectomy brought me to my knees.....

I had an interesting visit with the Pain Specialist Doctor today. My breast surgeon referred me to him for preventative measues to eliminate any possibilities of a pain problem due to surgery. He said that they understand little about the why of pain syndromes, but he said that stress is most likely the greatest reason for pain syndromes. He said my RSD and surgery puts me slightly at highter risk for it to occur elsewhere in my body.  But the fact, I have managed pain without med's and have overcome the acute pain of RSD makes my situation more favorable. He also said that pain due to breast cancer is usually PMPS (Post Mx Pain Symdrone).

However, he nor the surgeon want to take chances. They want to do a pain block before surgery, and pain med's 3 days before surgery....and 2 weeks afterwards. Oh...two different kinds of pain med's...strong stuff. Geee...I could get addicted. He gave me one prescription today. I can't see myself drugged up for that length of time.

The most interesting part of the conversation is tricking the brain in becoming pain free. My therapist years back, when I first injured my wrist/hand, said the same thing. The mind believes that we are in pain, and if you can somehow trick the brain then the pain will go away. The doctor said, they do it through a box of mirrors.  My therapist had me put my hand in cool water than warm water...back and forth several times. She said this also tricked the brain. All I know is it helped. I know keeping my mind focused on other things relieves the pain. Also, avoiding stress...which he said was a must.

To add...the Pain Specialist today also said the fact I'm fearful of the surgery puts me at higher risk for a pain problem. I've got to get over being afraid of another surgery.

My niece has fibromyalgia and is now going to the Cleveland Clinic fibromyalgia clinic. She feels so much better since starting. They do blood work and give vitamins and minerals and other things that her body is lacking. The Clinic has a special clinic just for fibromyalgia. The treatment is individualized and includes IV infusions, exercises, meal planning, etc... It's very comprehensive.

carcharm - I sure wish I lived near Cleveland, sounds great. I am in such a bad flare of my fibro right now I don't know what to do. I am only 9 days away from my DIEP and I am more worried about how my fibro will be after the DIEP.

blondie- I also take Vitamin D and it does seem to help with my fibro pain.  I take 2,000IU's a day.  It's always a good idea to have a blood test before supplementing with high doses of D as too much can harm you.  I'm sorry about your flare.  The only good thing about my surgery was the pain meds they gave me for it also knocked out the fibro pain.  Hope everything goes well for you.

with my mastectomy surgeries, i was given very high doses of prednisone for 48 hours.  wondrous relief...

Stanzie- Over and over again I am amazed how many symptoms MS and fibro share.  I wonder how they tell the difference?  Is there something MS has that fibro never does or visa versa.  As I told you in another thread they thought I had MS because I had an abnormal brain MRI that showed several areas of plaque.  When I read all the symptoms of MS at the time I was so relieved that they had finally figured out a diagnosis and I could start treatment.  Then they told me, based on where the plaques were in the brain, it couldn't be MS but they didn't know what was causing the plaques.  I think they said fibro because they couldn't figure out what the heck it was.  Just makes me wonder if we're all suffering from one big disease that just has overlapping and various symptoms for different people.  It seems strange that we all seem to have the hyper sensitivity to stimuli (lights, sounds, etc), sensitivity to medicines, chronic pain and fatigue, mood swings, etc, etc, etc.  

Just curious- for those with fibro.  Do you see a rheumatologist or a neurologist?  

Barb - why so long to see a nerologist? That is a long time. Yes most of my symptoms are all on one side but I think that might be more in particular to me - not sure. I think 3jaysmom sometimes checks in here and if I remember correctly her symptoms are all over the place.

One think MS has that I don't believe FM has is the relapsing remitting part. Now the fatigue is pretty much 24/7 but what they call excerbations where someone with MS might wake up and can't walk or drags their foot or can't see - those symptoms are treated with high dose steriods and ususally then go away - they can come back but with typical relapsing remitting they come and go. However, anyone with that type can get secondary progressive where your symptoms and excerbations continue to get worse and worse without the break from the big symptoms - And their is primary progressive which continues to get worse. 

I read about a doctor Zambini (sp?) who has treated some people with sever MS with something similar to angioplasty(if that is the right word) Anyway, they found by ultrasound some people with MS have the arteries going to their brain clogged or twisted cutting off the blood supply. He inserts a balloon to open up the artery and it showed one patient awake during the surgery and he said it was an immediate sort of whoose- wow I feel like I used to!!! Very Interesting and exciting- supposedly they are going to start trials in the US. At the end of the video clip - they talked about how this could be a huge breakthrough for ALL auto-immune diseases. Wouldn't that be wonderful!

i see a rheumatologist who diagnosed RA, fibro, and Sjogren's.

Just got diagnosed with hypothyroidism.  Waiting on more test results.  Anyone else have this and what are you currently doing to treat it?  Amazing how many symptoms are identical with fibro.  Makes you wonder if there is just one big auto immune disease with varying degrees of symptoms.  

Rats! Except for the thinning eyebrows and joint pain, it doesn't seem to fit.

HI Kate - I am hypothyroid as well. Prior to getting on synthroid, I also tested positive for high cholesterol. Once I was on Synthroid, it came right down and has been normal ever since.  I take synthroid and cytomel (t3).

Good luck to you. 

BTW - very interesting thread. I always wondered about the connection of autoimmunie disease. Not sure if its connected, but I also had shingles. I see someone mentioned this above.