Do You lay in bed at night trying
 

to figure out what is going on in your body?

Friday night I went to the restroom and the floor was very cold. I keep my heat down at night because I can't stand the heat. Anyway when I went back to bed the bottom of my feet were burning but my feet were like ice. My legs get too hot so I have to keep my legs out from under the covers and my feet under. I wore two pair of socks last night. I have not been able to get my feet warmed up since.

I have things going on inside of me that I can't figure out. I'll have wierd feelings going on in my stomach and my whole insides. I have noticed this several times in the past. I will lay in bed thinking what in the hell is going on in me?

It's hard to seperate the Fibro from the RSD and I never have figured out the CSS.

It's very frustrating to deal with all of this. When I go into the Drs. office I never know what to talk to him about because I have so much going on. You walk out of the office thinking I forgot to mention this or that.

Why is it with these syndromes there are so many things associated with them to the point that we just get frustrated trying to figure it out.

Ada

Hi Ada
Those are all my nights I also wear 3pr's of socks then those furry things
on top of socks-one night I got out the heating pad and wraped my feet in
it- that helped- also cold at same time I am always puting one leg out of the
covers I can not find a comfort zone seems like my feet are burning but cold at same time.I also have FM. does this go with RS?, make notes for the DR.'S might not help -I don't think they know or taking the time to check
into the complant's we all have.If you find out any thing let me know.
Good Luck
Susan

Hey

I can totally identify - it just REALLY sucks - I never know what is what disease and what is just me!!! cos HMS, RSD, dystonia, (diagnoses as well of cps, fms, raynauuds, MS..... ANYTHING AND EVERYTHING!!! - but I tend to just believe in the RSD/ HMS/ dystonia thing... and that's more than plenty!!!)

somtimes feel like asking my dr for a new body cos everything is messed up with this one....!!

wish I could help - but you aren't alone!!

love Rxxxxxx

Hi Girls,
 

I also slept with a heating pad on my feet last night. I have 3 sleeping pads and have used them all at one time. I have had to put one on my chest, one on my back, and one on my lower pelvic area. I just wish they made bigger ones or a wrap around.

Frogga, I was diagnosed with MS last year and I haven't even delt with that issue. Like you, I tend to try and deal with the RSD and the pelvic pain.

I also have the TOS, CPS, CFS, Fibro, Costo, CSS, RSD, IC, Depression and too many more to mention. I think that's what makes this so frustrating. A lot of them overlap each other and you get one area calmed down and then something else starts. I wake up at least every 2 hours dealing with one thing or another.

When I go in to see my Dr., he tackles what ever issue I mention to him but I overwhelm him at times. Last week he gave me triggerpoint injections in my hip/pelvic area trying to calm that pain down. It usually takes a few times of shots to calm down an area. It took forever to get my chest area calmed down. I probably had over 200 shots in the area over a period of time.

Susan, Fibro does go with RSD quite often. They both seem to go with TOS a lot too. One seems to bring on the other.

I just find it very hard to deal with nights. It's like you feel at times dealing with nights like we have that you could go crazy dealing with them.

Ada

HI Rosie,
How are you? when do you do the T.V show ? I wish we get that here-your
quiet a young lady you have been through so much and still facing each day
with a positive attitude I really admire you I know your family has to be so
proud to have such an amazing and very smart daughter,I wish you nothing
but very good thing's--I just read on the front page of our news paper one of
the pain Dr's in this area (MI) gave a women 32yrs. old an injection in her back for head ache's she passed away 3 days late--- DON'T THINK I will do that any more" big chicken" DEPRESSING!!!!!!!!!!!!!!!!!!!!!!!!! SEE YA SUSAN

Ada

you have no idea how I empathise about much of what you said. I can't handle multiple diagnoses, understand my body or anything really.

Firstly - I don't really care what name they give what's wrong with me - I just want the pain to go away and to be able to live my life, without pain and without disability. I just want to be normal.(well. my own unique self - but normal physically, I want to be able to do what my friends do and not pay for it for weeks afterwards). Take tonight - I have a friend from Oz sleeping on my bedroom floor - she has been asleep 2 hours and I am nowhere near sleep and the way tonight is going I will get none - I'm just fed up and want this over with - WHY can't I be normal? (My OZ friend has mild RSD and she is dead to the world and seeing her brings the reality of RSD to me).

Trying to understand what my body is doing to me is impossible. I just can't understand it - I fear I have lost the words to describe what it is or what I am anymore other than a giant ball of pain. I don't know what is which and it drives me insane.

I'm just being miserable tonight - I fear I have really done my left leg some damage - I think I've subluxed the hip and knee - it went into spasm, got caught through my bed sides and made some "pops" and "cracks" noises... and now hurts pretty badly - so now my feet are on fire, my hip is on fire and I can't move it - everything is fire (but.. for the first ngiht ever in Bath I am without covers! and this is cheaper than central heating - so being a poor student I will now be able to afford to eat - JOKE).

Oh well.. I just wish the dr's would realise is that I don't care what they call it. How many different diseases they decide it is. I just want treatment and to get better.

Susan --> I really think you should see your PCP before you come off everything - it sounds like you need treatment - can't remeber if you have made an appt with a PM dr. Have you considered any holistic treatments?

Oh well - we will just have to have a quiet, virtual, girly night in, with lots of heat packs, chocolate and cocoa............(and movies, facials, gossip and girly magazines).

Lots of Love

Rosie xxxxxx

I can relate, Ada!:hug:

I was finally asleep last night and awoke to my feet and arms feeling like they were being burnt and had ants crawling all over them. My feet and hands were bright red and swelling up. Ouch!

Sometimes I wonder *what* will happen next- I go from white, purple to red; I go from ICE COLD to BURNING HOT and I swell up and then go back to "normal" and feel like I'm gonna go bonky feeling like I'm eatin' alive by ants or my own blanket! :eek: :eek: Ugh... you know the pain.

Sending some ((gentle hugs)) your way! I hope your evening is cozy and pain free! :hug:

Hi ADA
Thank you for the concern very puzzled this is the quality I will have
for the rest of my life--pain clinic called me back (took 1 week) I had
asked if they would try me on Ketamine? their reply was NO to many
side effects that could happen he said--I don't think I will do any injection's
any more-no help--I swear the sensivtivity !!!!!!!! numbness--pain--I'm
souepose to live like this 24-7's I can't even get out of bed nothing or nobody
can touch me any where--People live like this ??? (HUH)
:hug: SLEEP GOOD
SUSAN

HI ADA
Forgot to ask you do you have any sensitivity if so what do you take? or if you
know any one who is suffering !!!!!!!!!!!!!!!!!please let me know
Good Health
Susan

Hi Susan,
 

I do deal with sensitivity also. As far as shots, my Dr. uses zylocaine for my RSD, Fibro, TOS, and Costo. They work but it takes a series of them to calm things down. I was also given zylocaine to put in my bladder for the IC.

I finally got my feet warmed up and then I went to town Sat. and was on my feet for too long and started the cold and burning in them again. It feels like my feet were frostbitten. My legs are hurting also.

Ada

Hi Ada
Thanks for answering me the information will be very usefull--know one has been in touch or responding to me--maybe I talk to much go on to long--who knows.
Sooooooooooooo cold has been making everything worse for me
Take Care
Susan

Hey, Susan....
 

BTW Susan, when I had posted about PT/ RSD I meant to address it to Laurie and YOU, not Laurie and Jasmine! :o Oops... So, I was trying to answer YOUR questions about RSD/ PT and desensitization/ therapists. ;)

I answer everything I can... I think everyone else does too. Maybe some posts got overlooked? I am sure no one is trying to ignore your posts. Everyone is so helpful here. I really appreciate everyone. People on this board have helped me out a lot since I joined in December. I'll be on the lookout for more of your posts... who knows, maybe I can help you out! :)

I hope you have a nice evening! :hug:

I think everyone here is suffering in some way with RSD.

I *think* that the only thing that can be done for the sensitivity is desensitization. Some pain meds. may help.

Where is your RSD located?

Maybe you could start a home desensitization program, if you are unable to find a PT place for that. That might improve your sensitivity to a point where you can have things constantly touching you (ie- if the RSD is in your foot, you are able to wear a sock/ shoe). Somehow we have to try and have things touch the affected extremity. I know how hard that is... I have RSD in both my legs/ feet and hands/ arms/ shoulders. If I decided I couldn't have ANYTHING touch me in those areas I'd be wearing next to nothing. :D LOL, see what I mean?

I don't mean to sound harsh at all, but I think you can find something, somehow. Keep trying!:hug: HeatherAnne mentioned things she did for at home for desensitization, in my muscle spasms thread:
http://neurotalk.psychcentral.com/showthread.php?t=9621

I've heard of people pouring RICE on their foot that was affected. :eek:

Hugs,
IHH