[Jerie]

I am at my wits end with sympathetic blocks. I have been having severe pelvic, bladder pain. I have had bouts the last 3 years but this is taking the cake. Every muscle in my body hurts. I am sore to the touch. When I stood up the other day I didn't think my legs were going to hold. My glut muscles and the muscles on the inside of my groin are sore. The tendons in my lower arms and the muscles in the back of my thighs, my neck, everything hurts. I have been taking a lot of opiates which I don't normally do because I use oral ketamine. I also have been taking baclofen, but I swear it made it worse. I had my bladder scoped and they can find nothing. The veins in my groin hurt too, if it's possible to feel vein pain, but I swear I do. Sometimes my whole pelvis aches and I get referred pain down my legs too. I am about ready to ask for a pain pump. I am tired of trying nerve blocks for full body RSD. It's impossible to get relief from all my symptoms. I can't take ketamine for burning and opiates. Opiates can make me burn if I take them too long too. That's why I don't use them often. There are just times burning isn't the #1 pain issue going on. I have the body bouts and bone things at times too. I think this scares me worse than the burning. I get afraid RSD is going to get me and end up in a wheel chair or dystonia so bad I won't be able to function at all. My long muscles are affected right now. My bladder issues are very painful, painful urinating too. No infection either. Hurts to wipe too. (that's burning nerve pain.) Bladder just dribbles sometimes too. Think I have to go and nothing much comes. My first thought was my thyroid meds. That is the only thing new. Another RSD gift to add to my list. I didn't see anything on line that would lead me to believe that is it though. Anyone have any ideas? I take trace minerals, vit D and liquid aminos in moderation. I think my electrolytes are good and my last labs looked great for a change other than my thyroid that is.

[RSD ME]

I'm sorry you're suffering so much Jerie. I had similar stomach and pelvic pains and found out I had endometriosis. Maybe ask your gynecologist to do a pelvic ultrasound and CT. I'm no dr but I understand stomach pain all too well. The rsd may be making it feel worse and you could have an UTI too. That could cause the burning when urinating. A simple urine sample and antibiotics can help cure that. I hope you feel better soon. Take care my friend.

[Nanc]

Hi Jerie!

I have gone through this bladder and pelvic pain stuff recently. My PCP referred me to a wonderful Urogynocologist. I had burning when I pee (never an infection), urgency, frequency, burning pain in my bladder, etc...I hurt when I wipe too, but not sure if it is PFD, IC or RSD. He did all sorts of tests on me - urodynamics and cystoscopy in the office. Under anesthesia (out-patient) he did a cystoscopy with biopsies and hydrodistention. I was diagnosed with interstitial cystitis and pelvic floor dysfunction. I thought I also had vulvodynia, but he did tests and determined it is actually RSD in that area. Have you had any of these types of tests/procedures? A lot of your symptoms sound like IC and PFD. Go to http://www.ic-network.com and click on the conditions tab, they have some great info.

Nanc

[lovefamilypets]

I have CRPS in feet, legs and hands and lately have been having terrible pelvic pain spasms, contractions, the front and back of my pelvis ache so bad I can't sit. I also have burning pain upon urination but UTI test came out negative. I saw a Urologist who thinks it' pelvic floor dysfunction which she said she doesn't treat so sent me back to my OBGYN who has no idea what to do with me. She just keeps sending me to physical therapy which hasn't helped yet and it has been several months.

It's hard since it seems like every doc I see just says "oh it might be the CRPS, but there is nothing we can do about that."

I just wish I had a doctor who specialized in this and would get to the bottom of it! Anyone have a doc recommendation in the Sac area?