[chrisandrob4ever]

My RSD started in my left foot 4 1/2 years ago with a sprained ankle. It has slowly spread, I have it in my hips and even in my bladder. Over the last few days it feels as if it has spread to even more places. I am having spasms all over. And I am getting no relief. I am starting to feel crazy. The stabbing pain and fire and little pins and torture that I have felt in all the other places I am now feeling everywhere. Is RSD capable of spreading without you doing any damage to another part of your body? I don't want this to spread. I am only 38 I can't take much more of this. Please help me someone. I can't even get my doctors to listen to me I really need a lot of help.

[tkayewade]

I just found out I am systemic after only 2 1/2 years. I am only 38 also. Well, I will be 39 next month. I have it in my bladder and stomach/gi area. I also have it in all four extremities and eyes. Definitely not fun. I'm so sorry. I hope you can get relief!!

TK

[Brambledog]

Originally Posted by chrisandrob4ever

My RSD started in my left foot 4 1/2 years ago with a sprained ankle. It has slowly spread, I have it in my hips and even in my bladder. Over the last few days it feels as if it has spread to even more places. I am having spasms all over. And I am getting no relief. I am starting to feel crazy. The stabbing pain and fire and little pins and torture that I have felt in all the other places I am now feeling everywhere. Is RSD capable of spreading without you doing any damage to another part of your body? I don't want this to spread. I am only 38 I can't take much more of this. Please help me someone. I can't even get my doctors to listen to me I really need a lot of help.

It is possible, but you may also be having a bad flare that will subside again... I had a patch like this a few months ago and thought I was going mad with the damn thing, shooting electric shock type pains throughout my body, pain and soreness all over the place, GI pain with vomiting and diarrhoea (twice, a couple of weeks apart, for no reason, and the rest of my family didn't 'catch' it), also some spasms, twitching etc. it was horrible. I changed meds and watched my diet and stress levels, and it gradually eased off.

I think sometimes the CRPS just goes a bit crazy throughout your central nervous system, and affects everything for a while. Hopefully it doesn't mean it is permanent spread.

I do hope your situation improves really quickly, and you feel a little better soon. Must be a miserable time Try to stay calm where possible, eat healthily, and try to keep gently moving if you can. Distractions and small treats might help you feel a little more human for a while...and you definitely deserve something nice

Take care of yourself,

Bram.

[cait24]

Originally Posted by tkayewade

I just found out I am systemic after only 2 1/2 years. I am only 38 also. Well, I will be 39 next month. I have it in my bladder and stomach/gi area. I also have it in all four extremities and eyes. Definitely not fun. I'm so sorry. I hope you can get relief!!

TK

TK, I am battling mutiple autoimmune diseases as well as RSD. I have severe chronic unexplained diarrhea.

Do you mind telling me what your symptoms are for rsd in your GI area?
thanks
kathie

[tkayewade]

Originally Posted by cait24

TK, I am battling mutiple autoimmune diseases as well as RSD. I have severe chronic unexplained diarrhea.

Do you mind telling me what your symptoms are for rsd in your GI area?
thanks
kathie

My GI symptoms are nausea and flip flop between constipation and diarrhea. I also have lost a lot of weight. I weigh between 110-112 and I'm 5'7. I weighed 160 when this started. I also have really bad stomach pains and have to really eat blandly now. No hot stuff, spicy, greasy, or anything.

Familiar?

TK

[cait24]

TK, thanks, yes the symptoms are familiar. I have about 30 bouts of diarrhea a week, lots of intestinal pains and lost 50 pounds in 6 months. I have to watch everything I eat.

I also have constant tinnitis and balance issues/dizziness which I think is part of the systemic RSD too.

Sorry you are going through this too
kathie

[tkayewade]

Yes, cait 24, our symptoms are quite similar. They tested me for ms and had actually dxed me with it and then when I went to UT southwestern, I had no ankle reflexes, and ms usually causes hyper reflexivity. I also have cardiac issues, and the balance problems so bad I use either a walker or wheelchair. I hope you find something to help!! I haven't yet.

TK

[Brambledog]

Sorry girls, I bet this is the dumbest question ever....

Have you been tested for coeliac disease? It's quite common to have it when you have CRPS, it's another auto-immune disease...

The diarrhoea, weight loss, stomach cramps etc all sound very familiar. I felt so poorly before diagnosis, it affected everything, and i felt a lot better on a guten-free diet - once my doc had finally agreed to send me to a gastroenterologist (took nearly two years to persuade him, omg). If you really don't want to do tests, you can just try going gluten free and see if it helps, but you do need to be very strict, I'm sensitive and even the tiniest amount makes me ill.

Just a thought. Sorry if you already have it or have been tested!

Bram.

[cait24]

I have been tested multiple times for celiac, both by villa biopsy and blood test. All were negative. I have cut most of my carbs out because with the MG they are too hard to chew and swallow. I eat mostly fish, overcooked veggies & potatoes, yogurt and soft fruit.

I was leaning more towards Chrons but the GI doc thinks it is one of my other autoimmune disease. There is so much overlap it is hard to tell.

My original neuro thought I had MS and not MG but my MRI of the brain did not show anything. So he diagnosed me with optic neuritis and expected to see me back. 50% of MS patients are first diagnosed as optic neuritis. The neuromuscular specialist did a SFEMG and said MG. In the last 3 month, my RSD has been breaking through after 15 years under control - those funny nerve sensations and the awful cramping and spazing of the feet. I think the MG aggrevated it.

thanks,
kathie

[Brambledog]

I suspected you would have been tested already! Oh well...

Have you thought about trying an elimination diet? My mum and I did it to find out what was causing her GI problems about ten years ago, and it was really interesting. She had had a food sensitivity test, and it decided about a dozen foods were off the menu...a dozen major foods that mum wasn't happy about! So we tried this, and found that actually it was a few key foods that made her feel dreadful, not the whole lot. Interestingly, it's quite common to have a problem with vegetables from the deadly nightshade family....one of which is potatoes.

It might be worth a try, there's loads of info on the net, but this site seemed the most clear and talked some sense about it:

http://www.precisionnutrition.com/elimination-diet

If nothing else, keeping a detailed diary of your food intake and symptoms can reveal some surprising patterns. I did it for a few months to try and convince my doc that I DID have a problem with gluten when he kept denying it. Grr.

Really good luck, gastro problems are horrible at the best of times - when dealing with CRPS as well it's utterly miserable. I hope you find a way through this and can feel a bit better soon.

Bram