NeuroTalk Support Groups - How do you survive with this?

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - How do you survive with this? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/54819-survive.html)

Quote:

Originally Posted by GalenaFaolan (Post 383760)

Was the pencil thing like a little wheel with tiny spokes on it? I remember a couple of docs that had one of them and ran it up and down both of my legs. A neuro I saw would have me lie down and he had a safety pin in his hand. I closed my eyes so I couldn't see at all what he was doing, then he would touch my skin, on both legs with either the pointy end or the round part and with either the point or the blunt side I would jump and yelp cause it hurt!! When he told me I yelled about the blunt end we laughed.

That's just an rsd thing. We perceive that a stimulus is very painful when it shouldn't be painful at all. It goes along with the whole skin sensitivity thing. Back when this was done on me I had no touch sensitivity just sensitive to air on my skin.

Usually the cold skin temp is pure RSD. Especially when combined with the burning, severe pain and weakness like that. It's very "normal".

Hugs,

Karen

Hi

The pencil thing was the end of one the q-tip sticks the doctors have in their office. It hurt like heck when he did it.

I think what is confusing me is the combination of sensations I am getting.
Today I have terrible burning in my hip.

Thanks for telling me it's "normal".

Its a horrible monster

I have a spinal cord implant and I have had mine for over a year and wouldnt know what to do now if I didnt have it. It doesnt take away all the pain but takes the edge off. It maybe takes away 60% at times. I have RSD in both of my legs and I am on many medications still but the SCS is a godsend to me. It makes a little tingle sensation that kinda goes thru your legs (for me cause thats where my RSD is) and kinda relieves the pain. I have a charger that I wear either on a belt around my waist or by wearing these little adhesive patches on it to recharge the battery. I have a remote about the size of a cell phone that has 4 programs for me to use for different things that are pre-set by Boston Scientific who are the makers of my implant. You can see a video and get more information about the one that I have if you go to ...

Good luck to you cause this is a horrible horrible monster :( and at times I dont know what to do ... I hate what has happened to me. I no longer can do the little things that I loved to do to make me feel like a girly girl. I know to other people its not that important but it was to me. I now am dependent on others to take me places since I no longer can drive a car. I can only walk maybe 10 feet or so on my own without the use of my walker before my legs buckle on me. I cant be the 'Nana' I always dream about being for my little Grandbabies. I cant clean my house the way I 'used' to like things done... you have to just let others help you and I want to do things my way and of course those days are gone. So many things we take for granted... so many little things l no longer have in my life cause I no longer can work and my employer failed to carry workers comp. Which means we are in a legal battle that shows no end in sight. My family have been so wonderful in dealing with what has happened. :grouphug: I am very lucky to have a fantastic hubby that has shown that he is indeed a true hero for me. :hug:

:eek:Wouldnt let me post the link to where it tells about the implant I have but you can look it up ... its by Boston Scientific ;)

Hi Summertime,
We all know how difficult and overwhelming learning about rsd is. Somehow we learn a little by little and the gravity of the disorder sets in. Thankfully we don't learn about it entirely at once. And then we learn about this forum and reach out to others for help in coping with it. Please don't feel badly about asking questions and expressing how traumatizing it is. We have all been there and understand and want to help.
I have both hot and ice cold symptons and also the burning and terrible headaches. So yes, it's normal for many of us to have both.
For me, RSD started in my upper left quandrant after surgery, then spread to my upper right quandrant, then spread to my lower quandrants. For some people it spreads from left side to right side or half the body.
It really does help to keep active. Limbs can freeze up. Before I was correctly diagnosed, it was in my left hand and I didn't get therapy soon enough and my left hand is like a frozen claw. Therapy and keeping active, exercises in water, have kept my right hand and both feet moving.
Has your Dr. suggested a tens unit before surgery to see if the electrical pulses work good for you? It has controls to control the strength of the pulses and timing of the pulses. I had one and used it when my left hand was so bad. In therapy, they used different textures to desensitize my hand. The tens unit worked good for a long time.
How long have you had RSD? I'm sorry my memory is bad, but didn't you get it after surgery too? Did your surgeon warn you of the possibility to get RSD from the surgery?
If he did,i t should be in writing and you signed it. If he didn't let you know, some surgeries have a risk of RSD and it's an act of omission on the surgeons duties. My daughter is a court reporter and has done depositions for malpractice suits. I'm not suggesting you pursue this avenue of insurance coverage and recovering, but his insurance should have RSD worded in his malpractice insurance. I personally didn't pursue my misdiagnosis, but sometimes I wish I had. I never realized I would or could get this full body and not be able to work.
I hope you get your insurance to cover you. Take care, Loretta

Hi

Mine started after my second operation. I was warned it could get worse. I get terrible headaches as well. My memory is not good as use to be either. I believe it's because the pain is so intense it clouds my mind.

I really feel bad for everyone here who is suffering. Maybe someday there will be a cure and we will all look back at this and say we made it. Loretta you sound like a strong woman, even though there are days you probably don't feel strong. It's so nice to have others to talk with.

Thanks..:)

Bosco

I'm so sorry for all you are going through as well. I have a DVD that explains the SCS. I checked out the site you mentioned. Thank you
You will find a lot of support on this site. I know I have in the time I've been here.

some days are like that but hang in there!

hi summertime,
it is okay to whine here a bit and vent here--where else will people understand? but I also want to tell you that it does get hard some days, yes, but it also gets easier other days, and it is worth it to slog through the ickier days because the better days are SO worth it..
I don't know mcuh about the SCS and what treatment is best for you, but I can tell you that pain can get better, and that there are places to make peace with the pain that's left, and I hope you are having better days now.
hang in there, for watever it is worth, you're not alone,
annie