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

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
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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

Hi all, my name is Maree, i was working as a personal carer, when i was hurt by a woman who has demtia.

My left forearm has not recovered, this happend in Dec 08, so nearly 2 years ago. I was bought up to be strong, so i soldiered on , no matter how bad the pain was, continued to go to work , right up until the 23 Dec 08, walking around like a wounded bird, with my arm held up to my chest.

I finally got to the Dr, who put me on compo, i was off work for three months, had physio, accupuncture, exrays and ultra sounds done, these did not show anything, even though i have a lump on underside of my forearm, the treatment only made the pain worse.

I carried on for 12 moths, with the pain, having good days and bad, then in Jan , i hurt my arm again, this time it's a lot worse. I have been to several surgeons, who treated me like im a bung on, and i think this is partly because when they ask about the symptoms, there is so many , i end up not saying much for fear they think im not telling the truth, anyway, i have had an mri done, as well as xrays, and guess what, nothing showed up.

Only one specialist said he would not rule out CRPS, and said i must be going out of my mind, him and my own Dr are the only 2 who have taken me seriously.

I am seeing a phsycologist for depression, not only is it caused from the pain, but also from the disbeleife i have been bombarded with, from my manager, some co workers, and Dr's.

There needs to be more awareness about this ondition, its not fair we have to go through this sort of thing, the pain and the debilitating effects of this condition is enough for anyone to have to bear.

I have not worked since Jan , i cant drive my car much, i have only driven 5 times since Jan, my manager made it quite clear she did not think there is anything wrong with me, told me there would be no light duties, if i came back to work. The pain has prevented this from happening, and even it didnt, i would not be working there anyway.

I am on Valpro to help manage the pain, they tried me on LYRICA, and another drug, but neither of these agreed with me, i also have strong pain killers, but as you would all know, pain killers dont really do much. I am blessed with a wonderful hubby, and great kids, and good friends, and these sites, where i can talk about this , and wont be thought of as an idiot.

Cheers, Maree

I am new to this site and new to the computer so I'm not sure what I am doing. I'm kinda lost. I found this site and started reading about all these people with rsd and just felt I needed to join in and ask ?s too. I read so many of your stories and so much of it I can relate to. I was treated like a mental pt, and the pain was not acknowledged for the longest time, just more and more clonidine to bring my blood pressure down. I was finally dx the end of 2003 after suffering for almost a year. My husband would take me to the er and they would shoot me up with something, and send me home. I would sleep on the way home, and my husband would carry me in and then as soon as I woke up I would be screaming in burning pain. After i was finally dx, I was put on avinza 30 mg 1x day---baclofen--clonidine--and neurontin. The constant constipation from the avinza was the worst no matter how much fiber and stool softners, and magnesium that I took. But the pain subsided, and after about 4 months I actually started functioning substantially. About 8 months later I started being jerked awake, PM dc said it was the baclofen so was weaned off of it. The jerking stopped. was weaned off the neurontin. Any way was weaned off meds, using ativan, had a adverse paradoxical reaction to it, and it was dropped ct switching to massive doseages of benadryl. I started having horrible partial seizures, couldn't sleep, walking the floor day and night, so dr gave me xprexa, said it would help me sleep, made me worse, then trasadone, I'm still having violent jerking thrashing partial seizures and cannot stop moving, as when I do my body starts jerking me violently I still cannot sleep, getting only about 2 hour a night if that. I' literally going insane from no sleep. I tried the baclofen again but had a bad reaction to it, maybe because of the protracted benzo withdrawals and the gabba situation. I do not know what this is or what to do. PM dr says that it is akathisia, neurologist says just drug repercussion and should heal, and they are all trying to give me antidepressants, and I know that akathesia is reaction of dyskinesia from such so am confused. In the meantime, because of all the trauma and no sleep my body is trying to burn again. My cns and metabolism is in over drive, as i cannot slow down, rest, relax or sleep. I was put back on neurontin but started moving uncontrollably, as my head would be pulled backwards and my mouth would open wide and my tongue would stick out. I looked up information on pubmed and there is a case of neurontin causing a condition called oculogyric crisis. I asked my neurologist about it and she said that it was possible, so am weaning off of the neurontin now and mybe a little too fast. I'm still on cloniding and almost off the neurontin. In the meantime, still no sleep, and one violent jerk-spasm-thrash-yanking seizure after another. Is this the rsd? Any suggestions on what to do? elmarita454

Hello everyone, I am glad to have found a place for some answers (I hope). I have been battling severe chronic pain for five years now. Had every diagnosis told to me, then taken back you could think of, so you could understand my skeptisism in my diagnosis. I have read there is no definite diagnostic tool for RSD is this true? I ask because my story is so different then those above. While my pain is unmanageable, I do not have the "black&blue skin" nor did it seem to have started with a specific injury then spread. First I had horrible pain in the hip, no reason, just all the sudden couldn't bear weight. I had to wait a bit to go to docs (no insurance)all tests clear, then the pain started in the long bones (all right side) and the pain when I would get home from work would drive me to tears, you could actually see the throbbing in my right ankle. I haven't been able to work for two years now. Time has seemed at a standstill and all mushed together but either way, this pain has consummed my whole body now. I did fracture vertabrae in l-5 in a car accident but that was when I was far younger, then broke my tailbone and cracked the sacrililiac joint(sp?) due to the pain in my hip, sent me reeling down the stairs one day. When one seems to get a different diagnosis every year, not only do family members start thinking its all in your head, but sometimes I wonder myself. I know my pain is real, but I can see why people would think something fishy. The pain levels have now gotten to the point where normal "hermit" living isn't even doable anymore. When I first stopped working there was somewhat of an improvement, then a sympathetic doctor put me on some pain meds, at the time my dianosis was RA and FM. That helped take the edge off enough to allow me to walk up to store and back, which kept my joints moving, and care of the house. Now the pain is so out of control don't know much what to do. I started seeing a new family doctor very organized and up to date (old doctor told me I had "grown back my tonsils" when I had a couple growths on tongue/cheek, and asked him about them, when he siad tonsils, I said I had them removed at 23, lol let alone tonsils aren't on the inside of your cheek!lol. That was the last staw and sought this new doctor. Anyway after going over my records and taking an extensive history, I mean he mus have stayed with me a good hour! He started telling me about RSD and how he believes I have it but no way to tell for sure. Sorry so long and disorganized anyone out there have the same experience?

You sound a little like my daugther. She is 18 yrs old and it took me ten years and so many doctors to get a diagnoses.
One doctor said it was all in her head and one diagnosed her with FM without even turning around to look at her. All we had to say was she hurts all over, so that meant it had to be FM. I finally went to a FM specialist (he wrote the book FM for dummies). He said it was not FM but it was RSD. My daugther does not have what you would call a text book case. That is why it was hard to confirm. There are not test to confirm the RSD. Just that she tested normal on all over disorders. We are not sure what caused the RSD to start. It started slowly in her legs. The pain was not consistent at first. Then over time it spread to her arms, both legs and back, even face and the bottom of her feet at times. But still not a consistent pain. The skin sensitivity was everywhere.
Just last week she had her 1st ketamine infusion treatment. 3 day of high dose ketamine. It was rough but the sensitivity is down 80% and pain down 60%. Dont know how long it will last but the relief is wonderful. In her case she has had the pain for so long that the brain is having trouble understanding what normal sensations are. She is having to learn what normal touch and normal pains are. There is a good chance she will need another treatment (very expensive)but I will do what ever it takes to help her. I hope you will find some treatment to make life better. God Bless

Even though I am not RSD Dxed, I have a thought for you regarding one whose Dx says RSD while she shows no outward symptoms. Her name on here is Rrae, and you can search her and visit her profile page, then leave a message for her there, and she will most assuredly be in touch with you. She is a survivor, a fighter, a humorist extraordinaire and a woman of deep and abiding faith that has helped her deal with the ups and downs. I will mention you to her as well!

Prayin for you,
Mark56ZZ