Is all over RSD possible after only 4 yrs?
 

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.:confused:

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

:hug:

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 :hug: 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.

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
:confused:

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

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

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...:rolleyes:

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.

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

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 :grouphug:

Hello everyone,

I am a CRPS sufferer, a female 34 years of age, who has been dealing with this disease since July 2012. May 13 of this year I developed bladder problems. May 11 I worsened my condition by applying Rogaine to my scalp when my initiating injury was an occipital nerve injury/scalp irritation. My scalp got worse and my entire body reacted with a return of neuropathic deep aching pain and new symptoms as well such as circulatory changes that were more dramatic than before with all four limbs turning blue/red if away from the heart and increased intense spotty burning, previously it was diffuse over my upper body, and some burning over my legs and feet, which was new. That weekend after May 11 I took more Ketamine troches (lozenges) than normal and did so on an empty stomach while drinking barely anything. I had been using these lozenges (which are placed below the tongue) fairly frequently daily for about three months with some days when I increased my dose. That weekend up upped the dose to maybe 1000mg over a couple days. Then I started to have incontinence, some bladder pain, and frequency. The pain I would describe as aching with some burning. I had normal bladder capacity at that time. I thought it might be the Ketamine so I stopped using it and over the course of some weeks it seemed to be improving. Then a month after onset it worsened again, perhaps because I had a nutritional drink with potassium, or perhaps because at that time my bodywide aching worsened too due to stress. Then I made my CRPS arm worse so I turned to the troches again and my bladder got worse again, though I wasn't able to say confidently it was the troches. Now I have pain in the bladder 24/7 and it worsens with any kind of filling of urine and it's much worse than it was a month ago. I'm looking for any useful information on what may be causing my issues: is it CRPS spreading to my bladder because of the circulatory changes (even though I have not had other internal involvement to date) or is it the Ketamine? It's important for me to know if it is the Ketamine so that I can adjust my treatment... and treat my bladder. I would be interested to hear anyone describe their experience with bladder pain from CRPS: what it feels like, how it started, when it started etc. to gauge whether CRPS could be causing my problem. Thanks! Nicole

Sorry to hear its whole body spread. I have only had CRPS for 4.5 months and it has spread to all 4 limbs in just 3 months. i didnt do anything to help the spread, it just happened. For me it started in my left hand. Im alsofeeling it in my lower back and upthe left of my back.

Getwellsoonerorlate,
I have CRPS of the bladder. It spread there after an injury to my L5S1 and left foot 2nd metatarsal base fracture. After a couple surgeries and minimal physical therapy, I was left with CRPS. I did not know though. I had to wait the precursory amount of time and visit a certain number of doctors. Once the CRPS was diagnosed, my urologist said, oh yeah, all your bladder problems are connected to the neuro problems caused by the CRPS.

My symptoms include frequent infections, burning pain, fever, but I have hematurea (blood in the urine), pressure, inability to urinate/empty all the time. When i get an infection my Doctor calls in an antibiotic for me. In order to prevent the infections, I catheterize 3 times a day. Cathing is really not too bad. You can buy disposable catheters through an online pharmacy fairly inexpensively. Your nurse can describe how to insert the catheter, and in short time it becomes second nature.

Hope you feel better soon.

When mine spread to my bladder it was spasms more like what you would have in your arms or legs. Kinda like a UTI but there was no infection. I had to go see a urologist had test run there while I was having bladder spasms that showed my bladder was functioning normal but the nerves were going crazy. Good luck. This week I had my first spasm in my face scared me to death.