Have been lurking for quite some time trying to learn from all of you.

I'm 51 and am not diagnosed. My skin has been burning, sweating, skin hypersensitive, hands/fingers red/bluish at times, watery blisters, finger tips very sensitive, caffeine intolerant. Oh, and did I mention, a pain in the rear to live with?

Just started with pain center after seeing 2 rheumys, 4 neuros, psych nurse, etc. Drs have ruled out multiple sclerosis, rheumatoid arthritis, lupus, and fibromyalgia.

Thanks for this great forum!

Hi,

I have had leg problems since I was 11 (I am now 21), I had a series of relatively minor sports injuries. I was incredibly sporty, focusing most of my time either on athletics (the hurdles in particular) and on horse riding. By the time I was 15/16 they started giving me steroid injections every 3-4 months into my right knee, which kept me wallking until mid August (09). I had another steroid injection at the begining of September as usual however it didn't work. At that point they diagnosed RSD.

I have had problems controlling the temperature in that knee for a number of years, sometimes its really hot to touch other times it feels like a joint of meat you've just bought from the butchers. It also changes colour a lot and has done for a number of years.

I have now been on crutches for 7 months. I am in constant pain and on high doses of medication which I don't think is working at all, however when I don't take the medication I end up literally screaming my head off from the pain.

They have now said that they think I have got RSD in my right wrist from being on crutches (a couple of months ago they were saying I had tendonitis in both wrists from the crutches). So I'm having to wear a wrist splint a lot of the time.

My knee has reached the point where I am having to wear wither pyjama bottoms the whole time or linen trousers . On cold days I end up wearin the pyjama bottoms under the linen trousers. It is just too sensitive for me to have any other choices.

I am on a lot of medication and I'm not sure what is working and what isn't. In case anyone can make any recommendations having 'tried and tested' a lot of these no doubt I would love to hear your advice and opinions. Here is what I am on:

Naproxen- max dose,
Omeprazole- to deal with the side effects of the naproxen,
Lyrica- max dose,
Tramadol- max dose,
Paracetamol- max dose,
Quinine,
Citalopram,
Buccastem- max dose- to deal with the tramadol,
Oromorph- only when it flares up really badly.

I am also on a lot of supplements:

Dual Giinseng, Turmeric, Balance B-50, Multi Omega 3-6-9, Methyl B-12.

I would really appreciate any advice that anyone can give me.

Thanks,

Kate

My brother Mike is 38 y.o. and has had RSD for several years. He would get it in one limb then it would move to another. This past year, he did not have any 'flare-ups'. He had surgery a week 1/2 ago on his finger and now the RSD is back in that same hand he had surgery on. I dont understand why it was 'dormant' and now it is back? He lives in Buffalo, NY and sees a pain specialist, I don't know the name of the doctor though. Anybody have any advice or thoughts...it absolutely devestates my entire family when he goes through this. We feel so helpless...I just want to do anything I can to help. Any tips / advice would be great. Thanks....Judy

Hello everyone. I found this site by accident, but I sure am glad. My husband who had a surgery over a year ago on his left knee, has developed RSD, that has spread through out his entire left leg, groin and also starting to go to his left arm. What a painful road this has been, literally. After months and months and countless visits to various doctors, we are undergoing treatment at Johns Hopkins. He has already tried a nerve block, which lasted all of 1 1/2 days. We go this coming wednesday to discuss the possiblities of undergoing a spinal cord stimulator inplant. He is scared to death. He also does not want to continue on the medications that he is taking as it really makes him wacked out. Not sure what direction to take. Is there anyone who has had the stimulator and would you mind talking either by email or even phone to us about this?
Before all this took place, he was a very active, hard working carpenter. This has not only taken a physical, but also a mental and emotional toll on him and the rest of the family.

Hello bpkaper and welcome to Neurotalk.

We do have a forum specifically for SCS (Spinal Cord Stimulators) and Pain Pumps. Actually it's a subforum in NeuroTalk's main Medications forum.

I've copied your post over there as I thought more people who have an interest in Spinal Cord Stimulators might see your post if it was in that specific area.

Here's a direct link to your post over there: http://neurotalk.psychcentral.com/sh...d.php?t=117256

Hello & Welcome -

If you haven't posted in the main area of the RSD/CRPS forum, please do so, as sometimes new members get missed if they only post here.

Main area for the RSD/CRPS threads & posts-
http://neurotalk.psychcentral.com/forum21.html

Hi everyone - I posted this in the main forum I think, and Rrae kindly sent me in this direction so as I dont have the energy to re type it all I have copied and pasted my story in as well. I feel happier already as I dont feel so alone
************************************************** ********

Im Jo and turn 38 next week. I am a single mum to a lovely 8yo boy, Harry.

I have no lower right arm (since birth) and use a prothesis - this has never caused me any real problems more the odd challenge. In June, as a single mum, Harry & I emigrated to New Zealand, all was great until Dec 2007. I had an accident and splattered the brachial plexus nerve in my left 'good' shoulder and arm. The pain, over the days, became unberable - after many doctors visits and later specialist visits I was diagnosed with CRPS in my left arm and shoulder. Then in Dec 08 I kept getting pains like a hot poker shoot up my left foot and leg, and also I would get a pain behind my eye like no pain I have experienced before. My specialist told me my CRPS had spread, I was so gutted .

A few months later I felt that familiar burning, stabbing and hot poker pain come in my right side but at a slightly less intensity than on my left, and it hurt to use my prothesis. I saw my spec again and got refered to another spec that specialised in anaesthetics and he confirmed that the CRPS had spread throughout my whole body - I couldnt believe it.

I have been on so many pain meds. Most made me feel like a zombee and some, like the gabbapentin, put weight on that I didnt want which also didnt help with the pain especially on my leg joints and back. Now I am on Oxycontin 4x day plus antidepressants and meds to help me sleep as pain is not condusive to good sleep. My only possible option is the ketamine coma but it isnt recognised in this country and I dont have the funding to go abroad to do it and it scares me to be in a coma for days, but the CRPS and what I read about it scares me even more.

At the risk of whingeing, I then find if I do get any decent sleep then the morning is hell because my body is locked up. Harry comes and sits on my bed for a cuddle and I have to tell him to get off because it hurts like hell where he makes the matress squidge down where he sits on it, and if he cuddles me Im like 'be careful' and it then breaks my heart when he goes have you had your pills mummy? they wont work unless you take them - he shouldnt have to worry about things like that at 8.

My saviour are horses. I love horses. I love their smell and the softness of their touch. I used to get frustrated when Id see people brush them like a tickle, thinking horses like a good decent brush, now Im like one of those people that frustrated me, so now rather than hold a brush I just stroke the horse. I guess it is good therapy and I am learning to focusing my mind to try and bypass the pain but my it is not easy.

My horse Drago, was a huge part in my rehabilitation along with my good friend. It is great to ride as when my back locks up the gentle moving of the horse makes my back and body 'give in' as it is hard to fight half a ton of horse.

My aim is to ride in the London 2012 Paralympics, and possibly the World Equestrian Games (WEG) in Kentucky later this year. My own horse is sadly injured (looking permanent) and I have been riding my friends horse JD, he is such an awesome dude, he takes such good care of me as he knows when I feel wobbly and if I lose a stirrup he will stop until I regain my balance. I now have the ride on a mare called Ella who is like a female JD and we are training towards London and WEG if we can do it in time. It is a long shot and training is and will be extrememly challenging with many tears, too much pain to want to think about but I have to have a focus as I feel if I stop I will just shrivel up into non existence - I have also found that having spent an Easter sitting down lots I feel worse body wise - even though I enjoyed the time with my son and great friends

I am very happy to have found this site as I think that there will be others in a similar situation, and having read through some posts, it is an opportunity for empathy and support - to be able to give and help others having a tough time and receive it.

So hi to you Shannon and the other members on this site, and fellow CRPS sufferers - I look forward to being part of the community.

Thanks
Jo

ps how do you put the icons in please? Ta

Glad to see you found the RSD forum!
Feel free to start a new thread of your own if you have any specific questions....I just want to make sure the RSD folks have seen your introduction! You've been through SO much!

You asked about how to post the 'icons'......
Are you referring to the little 'smilies' (funny characters) or are you wanting to create an avatar for your profile?

My brain is shutting down for the nite , so I'll try to help you with that tomorrow k! Or maybe even someone else will come along and shed some light....
When I first joined this wonderful forum, it helped me alot to look thru the User Control features and FAQ's.......I'm amazed at how many things are available here! If I'm not mistaken, you may be limited on what you can do until you reach 20 posts...... You can go to the FAQ page (at top) and use the 'search' feature and key in words that pertain to your questions and you may get good instruction there.
I'll be checkin back with you soon

Rae

Hi Rrae
Thank you for offering hugs and support, I dont know you but it feels like I do and it is a great comfort. Re the icons I will read the FAQs tomorrow and as for the avatar I hadnt even thought of that lol. When I look more I will see if I can upload a photo of my son and my horse and maybe one of me riding. One thing that challenges me with the riding is the tightness of the jodphurs - it becomes one very tough mental game!

My brain is half asleep at the moment - I went for a lay down but now cant sleep so have got up again, I will have a cuppa then try bed again - I find DLS messes with my body clock - you wouldnt think 1 hour made such a difference!

Been a harder day today as it has been raining and I dont know how the cold and damp affects other RSD sufferes but I find damp days far more challenging. I always feel tentative at this time of year as we head into Winter (my friends I have in the UK I understand are having cold snaps and snow in the middle of their Spring!)

Another Q if you dont mind me asking do any of you get a deep and maddening itch that then becomes very painful to scrach? It drives me wild - showers exacerbate it and I hate the water touching my skin anyway but my feet, back and chest itch to the point I can make it bleed and I havent found a way to relive it yet apart from scratch. I do get funny looks!

I often get hot and cold sweats when I push myself and at the airport, on the way home, from Oz to NZ I did look and feel pretty rough, and the custom lady took one look at me and asked whether I had Swine flu! I hadnt but my gawd did the people around me stand back really fast. I felt eyes on me from every direction!

I look forward to reading more posts in this whole forum and thank you all again for your welcome. Id love to hear your stories, if they are in this site I will find them.....though I may need a point in the odd direction lol.

I have also passed this wonderful forum to a lady in USA (this lady leant me her horse for the Atlanta Paralympic games in 1996 - it was borrowed horses then) we havent seen each other since but have remained in touch and I believe the lady recently had to have a SCS implanted so I passed this on incase she hadnt seen it.

Enjoy your day, be strong, and for all those on a different time zone I wish that you have a bearable and hopefuly good night .
Cheers
Jo

Hi, I did post in the new member introductions but then found this so thought I'd do the same here.

I have had CRPS/RSD for over a year. I am here for information, answers to my questions (hopefully) and to talk to people that actually "get it!"

Thanks for the site, I look forward to talking with you