How would u guys describe a flare exactly??
 

The symptoms and the side effects and how long does it last?? I figure I have had one but not sure. I know some days I feel completely exhauseted and sick to my stomach and feverish,:eek: etc etc and basically feel like someone should shoot me down like a dog.. Haha I sometimes think I would feel better>>

Hi Sunshine
 

Hi Sunshine! I am sorry you are not doing so well. As you know I have had RSD since 1989, now full body. I can only speak for myself, but a flare for me includes all tmy symptoms at an increased intensity. To the point that I can't lay down or sit and just stand by my bed without clothing and wonder what the **** I am going to do!

Symptoms: Intense burning pain (with these triple digit temps the a/c and fans make the cold breezes blowing over my body just instenify the burn not cool me down.)

Weakness:(feels like my limbs will simply fall from my body) Its is a very strange and almost unbearable sensation.

Spasms and contractions: The right side of my ribs (which literally take my breath away and keep my from moving) and my extremities. Servere contractions of calve muscles and spasms in hips.

Red and mottled skin: I have almost a rash type redness throughout my chest, shoulders and down my arms. My Legs and hands become very dark purple and mottled.

Aching Pain: It feels like bone pain. Deep and almost a crushing pain as if a heavy object were on top of me. (Think train wreck)

Pin Pricks: Like being bitten by bugs everywhere. Extremely annoying.


Swelling: This causes limited range of motion for me.


Nausea: This stems from the extreme pain. Also from a total feeling of lack of control.


There are a few more symtoms but these are the worst for me. It is just painful to move. I dread taking my feet from the bed to the floor. Each step is painful! My flares can last up to ten days. There are many thing I have to do make this peroid easier but I'll leave that for another post.
Hope this help. I had to do this in a hurry. Hugs Di

Hi SunshineGirl,
I'm sorry you are feeling so ill. Flares are not good. I have full body or generalized as a neurologist called it. When I am in a flare, I run a low grade fevor, have intense burning in feet, legs, hands up my arms, The color is intense, red, blue, mottled. The pain is heightened and consumes my thinking, difficult to get my mind off my body. I stay in bed, and it's even difficult to walk to restroom or kitchen. I get scared of passing out, which I did once. I get severe headaches, and sometimes break out in red dots that are painful to touch. I also, like yourself, have an appetite change, not hungry. I've lost permanently appetite things I used to enjoy eating-am a vegetarian now with exception of occassional bite of salmon or fish. coffee, etc. low energy, tearful, depression increases. Hope this helps. Take care of yourself, your friend, loretta

Di and Loretta
 

All the symptoms you all are describing are right on except I don't have the intense burning like u guys or alot of swelling, minimal swelling.. I just went monday to a nephrologist for more tests on kidneys they ran blood again urine and a ultrasound on my kidneys and said they would give me the results in 1 month.. I can't believe I have to wait for results that long.. Any how I just think of the the 12 hour days that I work and just wearing shoes that long just kills me and I am getting worse I can feel it.. Sometimes I feel so bad I just stay in bed and do the bear minimum like maybe a load of clothes for a whole weekend..Can't even get up the energy to pay bills. And I usually feel nauseated almost all the time now. So the docs have me running around thinking all sorts of things.. I have 4 doctors and none of them every get together and decide what they can do to help me get better.. (1 heart 1 nephrologist 1 pm doc and 1 gp doc) All this money going out of my pocket and insurance paying and still don't know anything. Maybe it just takes along time.. to get everything diagnosed. Thanks Girls for the help

I am in the middle of a big flare due to the stress of an upcoming surgery. I have RSD in my left hand, shoulder and arm plus now getting migraine headaches and intense jaw pain. I do have a question, along with the swelling, sweating, nerve burning, joint pain and achiness, I also am experiencing anxiety attacks along with some minor chest pain. Has anyone ever experienced this during a flare. The anxiety is bad again, much like it was when I was first diagnosed. I stopped the anti-anxiety meds about six months ago, but I wonder if I should start back up. I am miserable. Also, back to only sleeping an hour at a time, then I am up wondering around the house trying to find a new nesting place to calm the pain and achiness.

I need some advice...

Hi Coffeebean,

After seeing your symptoms here , I skimmed a few of your recent posts and I wondered if you had ever read about Thoracic Outlet Syndrome{TOS}?

TOS can often affect the ulnar nerve, and causes sx in the hand, arm, shoulder, neck and upper back as well as can cause TMJ sx.
It also has quite a few crossover sx with RSD, a few are different, often w/TOS some will get RSD also.

I just wanted to mention that we have a TOS forum also if you would like to read more about it.
here's the useful sticky thread for TOS-
http://neurotalk.psychcentral.com/thread84.html

Hi Coffeebean,
I'm sorry you are in a big flare. Surgery is certainly something to be stressed over. I'm sure you have discussed pre-arrangement to avoid spread. I experienced anxiety attacks for the first time when I got RSD. Didn't know what was going on, as it was 4 years before diagnosis. But anxiety is part of the Limbic part of brain that is affected. Anti-anxiety med ,to me and my Dr., is just as important as pain meds. It calms the sympathetic nervous system and aids in pain prevention.
My sleep med quit working also and I wasn't going to sleep till 5-6 in a.m. It was awful. I was a mess. Saw my Dr. and he put me on a med that he is just finishing a trial study of 200 people. The med was in study for fibromyalgia-low dose - and found it greatly helped with sleeping. I have fibro. so he put me on 300 mg. of seroquel and I sleep sound 9 hrs of restorative sleep. Because of the good sleep, he cut the anti-anxiety med in half. From 6mg to 3mg. But lots of days I only take 2mg. It's lorazepam. He left it up to me for the pain med. I cut back from 6 vicodin a day to 2-3 a day.
Seroquel in large dosage is for bipolar and schizophrenia, which I don't have, but the pharmaceutical company did this trial of low dose, to see it affect on fibro. I've been on it about 7 weeks now. I'm getting my life back, able to drive, grocery shop, errands etc.Sleeping sound sleep is a gift. I'm so grateful.
It's good to hear from you again. 4 weeks seem like a long time. I just went thru kidney,liver, heart, tests-all good except low on vit.D and hormones. Saw a hormone Dr. and doing bio-identical hormone treatment plus taking 2,000 vitamin D.
I get terrible headaches too. I have trigeminal nerve disorder. And I fell and ruptured a disk in my neck and get terrible headaches from that. Fibro causes achiness, we have very sore spots at trigger points, like the elbow. I think quite a few RSDers have Fibro.
Hope you get some answers and good treatment. I had a EKG that was abnormal and went to cardiologist and went thru lots of tests and all was fine. But I do have high blood pressure from RSD. It's an autonomic disorder, so affects internal organ that are involuntary, like heart, lungs, kidneys, bladder, body temperature, sweating, circulation.
Let us hear back from you-Take care, your friend loretta

Yes Di pm me when u get time and give me advice for nausea and other helpful hints,,
 

:D Any
help u can give me di would be appreciated... I kept wondering why I was so nauseated.. Been trying to loose some weight but every time I cut back I get nauseated but like u said I think it is being out of control and being in that much pain?? How do u keep yourself from feeling guilty of not being able to do the things u used to do for your family etc and household chores.. I am just barely hanging onto my job for now.. not much done at home though..

Hey Sunshine...
 

I left you a pm, dear. Please take care. Lets talk soon!
Hugs di

Hi Dubious. I can so relate to that statement about "ground hog day".
The blocks worked for me in the beginning, but the doctors finally discontinued them. The Hyperbaric Oxygen Therapy works great. But again, it lasts about 8 months for me then I have to dive again. If not, I have to do maintinence dives like others on the forum who have chambers. My concern now is the repeated use of HBOT or where to find the answerr to that.
I really don't know what the answer to this million dollar question is.
di

di
 

How often and where do u go for the hbot??:eek:

Hi Diana,
What do you mean by repeated use of HBOT? Is there a downside to repeated use?
My Dr.'s two new clinics are open now and he said he was going to go in HBOT with his wife every day. His patients are having great success in the chamber. Healing from surgical procedures. And other ailments other than RSD. Just wondering about your comment about HBOT,

Hey Dubious--What a hilarious statement about Ground Hog Day! That is so funny!!!!!
I think I'll make a sign on my door and put Ground Hog Day. or better yet, I think I'll watch the DVD tonight.
We all have at least some part of Ground Hog Day come back each day. A sense of humor is so good for us. I read a book a long time ago, called You Can't Afford the Luxury of a Negative Thought. I remember reading it outloud on our boat on a lake. Our friends who are counselors laughed and laughed-we all did. Peter McWilliams is one of the writers.
He was involved in the 5 stages of grief when that came out a long time ago.
Happiness is an inside job.
Take care everyone, your friend,loretta

For me a flare ( which i have been experiencing this past week) is the terrible burning pain and redness and swelling in my RSD foot and leg, and then the burn starts in my right foot and leg, and my face and mouth burn....and I get very, very cold and dizzy.
What a combo ...the burn and the cold...:eek:

It could be a variety of things.....

1. the monthly shots that my foot doc administers directly into the nerves have worn off...

2....the warm pool aqua therapy ended, ( insurance...)and although it would aggravate the nerves in my limbs, it kept the swelling down...the edema is really bad in my RSD foot right now, to where if I push down on the skin, it doesn't bounce back up (ya know, like it does on the Pillsbury Boy...)

3. I cut back a little on my Neurontin, because it was making my brain feel like a bad foggy day in San Francisco.... forgetting words and losing files at work....and the weight gain is awful...

4. my worse fear is that the RSD is getting worse...

Hope4thebest