Hi ....
I feel as tho i have no right to be here. I was tremendously humbled when i saw the photos in the 'stickies' thread......
My heart truly goes out....

I've been in the peripheral neuropathy section most of the time since i became a member, but to this day i'm not 100% sure that's what i have.
In 2 wks i will be getting a SCS trial implant after 5 yrs of searching for answers, seeing several specialists, hundreds of blood tests, not responding to any of the standard neuropathy meds, herbal cocktails galore, and umteen other procedures.....i honestly feel as tho every possibility has been ruled out and yet still i have no 'legitimate' diagnosis.
To be honest at this point i don't CARE what the diagnosis is, i just want the pain GONE.
It started out as knee pain (both knees), but has spread to the entire legs. The pain is piercing at the knees radiating outward as a severe 'burning' sensation. Each leg feels as tho it weighs 200 lbs in full flare mode. I can't hardly go up stairs anymore and getting harder and harder to even walk.
My legs LOOK normal tho. The RSD patient's photos CLEARLY shows a painful problem.
I've been told i have small fiber peripheral neuropathy/RSD/fibromyalgia/Hypothyroid/CRPS...... quite a mix of confusion is my point..
Getting the SCS seems to be the only thing left that has potential to cover the pain.....
Does anyone here have any input to share? All i get from the medical community is fragmented information. I have found that the REAL information is with the actual patients.
RSD patients seem to get the SCS implants moreso than neuropathy pts from what i hear anyway.

Thank you and God Bless
Rae

Nice to hear from you... Iam an RSD patient for 3 yrs... Rt. leg and spreading!! I have a SCS.. it was implanted in 9/08. Now everyone iis different but mine did not to prove to be a positive..as my trial was but the permenant one has mad my RSD mad!! I honestly don't use..I just have it in me... for good.... Btw reading your note.. seems you do have RSD going on....
Soft hugs!!

Hi Rae, Those pictures are scary. I have full body RSD 15 years. I've been fortunate to have a couple of remissions for a year plus each. I attribute physical therapy and massage therapy to it and getting use of my limbs again.
I agree, your symptoms, do sound like could be RSD. Sometime there is a dual diagnosis. My spread come over time and with a second injury-water skiing. First- was surgery. From years of reading I would like to encourage you to research the SCS. There are some good experiences, but there are also some spreading, including internal pelvic spread. Which I have, but not from SCS. Please do lots of research-some of us have internal as well as external and it's not good. Take care- loretta

Thank you for responding

What does the 'internal' pain feel like? Our outer skin has the nerve endings which bring on the awful burning pain....but i'm totally in the dark about the internal issues. Is it like bone pain? deep, aching....
Or more like internal organs?

KeepSmilin i'm so sorry the SCS didn't work for you. It's quite a big deal getting one. Would it help your pain if it were removed i wonder? Probably would further aggravate maybe.

As i read thru all the stickies it seems most folks attribute their RSD to some sort of injury or incident and then it spreads from there.....
Mine just doesn't seem to fit any certain 'mold'. At the time of my onset in both legs i was recovering from a hand fracture surgery......it was within 4 or 5 months that my leg pain set in. The hand healed just fine and never had any problem with it since. So, it just seems so confusing about the legs....?
I know there is 'referred pain' and 'phantom limb pain', ........

Maybe i just simply THINK too much....

I'll shut up and get the trial implant....if it works great. If not.....then i'll cross that bridge when i get there.

It gets to be a lonely life tho.....
I've turned away from most of any 'social life' that i used to have.

This forum IS my social life....

Rrae... and hello loretta....

I just want to say..yes..this is/can be a very lonely battle..we are family here..esp. cuz we can understand the pain ones has to endure..it is so not easy until ones walks in our shoes!!! Days can be very long and sad..

As far as RSD and how is began..so different for us all.. Some never know!!! Mine, I had I believe long before I had a knee surgery but it was further agrevated by the knee surgery and that is my worst area affected, my rt. lg... as far as my original injury ..not sure! Just started having trouble walking 4 mos. prior to my knee operation and by the time I got into the OR I was not able to walk without crutches! Now I look back I had been having some hearing issues and headaches, I mean nasty headaches..who knows if they are/were aquainted...

Removing my unit was discussed but I rather leave it in as 1). I'd rather not go thru what it took to put it in there..2). I had it wired for both legs and my RSD is lurking there too, my opposite legs so... my SCS is my new best friend! Plus it can pormote more spreading of my RSD.. who wants to go there?!

Gentle hugs.... KS

Rae, You have every right to be here. You deserve support too. I hope you find it here. Those pics scare me too. I have RSD in my upper body. I get some color & alot of temp changes in my hands. Primarily my original injury site wghich is my right hand. But the RSD has spread to my back & left arm. I got an SCS in MAy 2008. AT first I wasnt really thrilled. Mostly because the RSD spread. I have pain in my right hip now too where the generator is. But it seems especially the lasy 8-12 months the SCS has helped me more & more. I dont like it when its off most of the time now. I really hope it helps you & gives you some pain control. I have heard stories where it didnt help at all to give 70% pain control. For me it just eases things but its better than nothing! Good luck to you.
Denny

You are right, Rae, that the typical pattern is an injury or surgery that continues to have pain long after it is fully healed. And the pain is greater than would be expected for the injury itself.

There are cases where there is no identifiable origin. The pain just starts. I have been asked by every doctor: "What caused this?" and I have no good answer.

We had a record rainfall and many basements, including mine, had water in them. I needed to take several dozen (maybe hundreds - I wasn't counting) trips up and down the stairs to discard all of my waterlogged possessions. About a week later, my left leg turned purple, swelled up, got hot and went into great pain. You know the rest. That was 23 years ago.

Don't worry too much about the cause. Concentrate on the treatment.

Best wishes,

Mike

I agree. Sometimes I dont think I'm suffering as much as I should be compared to other people. After reading a ton of stuff everyone here has wrote I feel sad, like I'm not suffering enough. I feel like I'm losing everything again. People who are my friends here, suffer worse that I do and I just want to take the pain away from them. If I was the only one suffering in the whole entire world I would be happy. I wouldnt have to see people die, I wouldnt have to see people in pain. Kids would get to run around until they grow old. Adults could live their lives like they were supposed to.

What if by just talking on this site people get even more stressed, more depressed because some people are getting better day by day and they're not? I dont want to hurt people, I want to help. Why do people have to suffer in the first place?

Snowboarder you have a huge heart i can tell. I agree with you 100% It simply just ain't fair.
This forum is so wonderful. Sometimes i'll see a post from someone else who just needs a fellow companion to say "hey man, i know what you're feelin'. We don't have to be experts. It really helps to 'build me back up a little' each time i contribute something positive to someone else's thread.

And Mike , thank you as well! You are SO right. At this point i guess it's obvious the 'cause' of my onset simply is NOT going to present itself.
I'm so sorry to hear how yours began. It hurts my legs to even THINK about going up any stairs at this point.

I remember reading somewhere that once we ACCEPT that this is happening to us, we will go thru a gammet of emotions similar to losing a loved one or a tragic death. There is a grieving process.....then denial......then anger.....saddness/depression..... you know.

Thank you all for your compassion - and please accept mine as well.
Happy Holidays....
Rae

Thank you. I just want to help others, honestly. I know how I feel with this so if I can make someones day better by telling a funny story or something I'm going to do it. I really hope one day that everyone can be pain free once and for all, and if I can be a part of that, I'm happy. If anyone wants to hear a funny story I have plenty and I really hope everyone finds some relief.

-Jeremy-