Can RSD effect organs??
 

Hi Im new to the forum and was wondering if its possible for RSD to effect organs or does it just effect the extremities?? Has anyone every had flank/abdominal pain from RSD??

I ask because I was diagnosed with RSD as a young child. I tore my right Achilles' tendon and had several casts/boots/braces and even after the injury was healed I had excruciating pain. When the dr lightly touched my foot I would scream in pain and was then given the dx of RSD. After years of physical therapy and countless braces the pain subsided and I regained movement to my ankle.

It was around this same time I began having unexplained flank pain accompanied by occasional microscopic blood in my urine...and later digestive problems which I was given the diagnosis of Inflammatory Bowel Disease Indeterminate Type. (I had inflammation throughout my colon but a dx of Crohns vs Ulcerative Colitis could not be determined) This was around age 12. I was also dx with juvenile athritis thought to be a symptom of the IBD.

Life continued and I would get on prednisone as needed.

Then in 2010 I was seen in the ER for flank pain and was dx with a severe kidney infection and non obstructing stones. From here I began having the unexplained flank pain...most severe on my right side with occasional pain on the left. I passed a few stones, developed a stricture in my left ureter which a portion of it was later removed. But I have the same severe flank pain even in the absence of a passing stone or infection.
It's as though when my body has acute pain, the pain receptors stay "on" so to speak and Im stuck with the agnoizing cycle of unexplained chronic pain. Without a known cause at this time for the flank pain I couldn't help but be reminded of the incident that happened with my foot all those years ago (I'm now 25) and wondering if its possible this could all be related?? That how ever my brain precieves pain, gets stuck on so to speak. I've started seeing a pain specialist and he's done 3 celiac plexus nerve blocks which have helped with my flank pain. But I'm still dying for an explanation and am curious to see what your opinions may be based on my situation or if anyone has gone through something similar

I'm sorry you are suffering so much with this nasty condition. Hope today is at least a little better for you.

Yes it is perfectly possible for CRPS to affect any internal organ. It is a systemic disease, so it can affect any part of the body. Often problems with organs are not diagnosed as part of the CRPS, as so many doctors don't know much more than the basics about it at best. There is a good Wikipedia page on CRPS that explains it in detail - it is worth printing out and taking to your doctor, and asking him to read it when he has the time.

Good luck, and I hope you get some relief soon.

Bram. :grouphug:

RSD is named for the sympathetic nervouse system which is the part of the nerve systems that controls involuntary muscles, glands etc. such as heart, thyroid, liver, kindly, breathing etc. making this possible for RSD to not just affect your organs but also spread to them. I have recently become friends with a couple of RSD sufferers that havi it in their organs now as well.
alot of what oyu have explained can be from the drugs you use.. I do have abdomen pain from RSD but it started in my past surgical scars, appendix, hernia, and bladder. also I have RSD in my groin,. Ask your DR,s many questions, and dont assume one way or another, and try not to stress.
Its hard ..I know, I wish you luck

My bladder was the first tip off that something was wrong with me. I had been referred to a urologist due to chronic infections and hematuria (blood in the urine). She began treatment right away, but the damage had been done. It was non functional; now I use a catheter. It was this urologist that took a look at my curled up feet and said there was something wrong. She referred me to an internist. The internist then referred me to a neurologist. He found one small abnormality with my first MRI of the brain. He performed a quick exam and referred me to a neurologist at the med center who was a specialist.

That neuro ran the gamete of tests. In fact, he ran some twice, three times, even four times. It took a year and 1/2 and he still couldn't come up with a diagnosis. He found problematic results but couldn't put it all together. Finally frustrated I went to St Louis and meet with another Neurologist, my third. At that point my Spasticity had gotten so bad I could not control my leg. It was jumping and swinging as I sat on the table. He looked through my medical file. He stepped out of the exam room and asked his associate to join us. He looked at my leg and told me I had Dystonia. He told me I needed a brace, Botox injections and a Movement Disorders Clinic. The other Doc agreed. I had no idea what Dystonia was. My Mom and I hit the Web soon as we got to her house. Dystonia is a bad enough diagnosis but often is an indicator of other disease.

I went back to Omaha and hit the yellow pages looking for a different neuro. The guy I was seeing may have been the best in Omaha, but he was either milking me for money or he wasn't the best after all. It had been a year and 1/2 and still no diagnosis from him. I found three neuro docs in the yellow pages that could administer Botox. I made an appointment with all three. My current doc was the first to see me. She gave me an exam, took my records, and sent me to an orthotics place to get a brace. She was great. During my second appointment with her she began Botox injections and diagnosed me with CRPS type II stage 3. Again, I had no idea what CRPS was. My husband and I hit the Web when we got home. I had this thing far too long. I had permanent contracture of my left foot/ankle. My toes were curled and my foot twisted inward. I was walking on the outside of my foot. I had curly toes on the right foot too. My bladder was broken. Test after test showed abnormal results. Finally I found someone that could help me and it was too late. She started me on a variety of meds. Physical therapy was in the pool. We still keep trying; we haven't given up completely ... Yet.

Don't get me wrong. I don't blame any of my Doctors for any of this. I ignored it initially. I ignored the bladder infections,. I ignored the curly toes and twisted foot. I'm not dumb. It came on gradually. I was just too busy. I didn't have time to be sick.

Answer to your question: Yes, my bladder was/is affected.

Does anyone have severe tinnitis or uncontrollable profuse sweating as part of CRPS hitting internal organs?

kathie

Terrible sweating on a hot day my body seems to absorb the heat and then in the evening 3 - 4 hours of sweat pouring off me like a waterfall

No; I do not have either.

Spreading to the internal organs
 

I have rsd/crps in my bladder so yes it does spread to your internal organs. I am sorry to say but I had several UTIs and had to see a urologist and run a bladder test to find out that my bladder was having spasms but was working fine. Just to prove it was the RSD. I knowits not good news but may help you a bit

Hi Kathie! I do have severe tinnitus...it drives me crazy! My ENT recommended that I go to a tinnitus clinic. Haven't made an appt yet, not sure if they could help me because I think it is from RSD. I do not have uncontrollable profuse sweating, although I do sweat a lot more than I used to.

Nanc

HUH!! I get that too , I wasnt sure if it was because of my immense and rapid weight gain or not
I know my RSD effected limbs sweat profusely despite the weather conditions. in the winter when my feet and legs are frozen the sweat and leaves my slippers soaked

Esophagus and bladder, along with other problems that I won't get into here..The trouble is that you don't know what is med related (opoids slowly everything down or the RSD itself shutting it down) it's a mess. What I do for the esophagus is to gag myself with a toothbrush..This stimulates the musles to work and keeps them active..As for the bladder..I don't try to hold it so often but sometimes that doesn't even word.Mine is slowing down and I know that it will be catheter time sooner than later...

Help me determine if it's the Ketamine or CRPS...
 

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