Hello all....

Anyone who has internal RSD.. do you feel burning inside or pain like yur belly or intestinal tract or heart.. what usually comes first?? Pain or possible changes in the way our system works?? What should we be watching for??

I know deep but I just wondered....

Great day..less pain for each of you...

Love, Kathy

Kathy , I have not "officially" been diagnosed with the RSD being internal , however when it started spreading from LUE it went into my left chest wall , left abdominal area and leg . I have the deep internal burn feeling in my intestinal/stomach area and am very sensitive to touch . I have not noticed any problems associated with this except for the pain , hope there are none to follow....Hope you are doing well , take care !

I have internal RSD it affects my stomach, heart, bladder and thyroid. With all of them I have the deep burning and stabbing pain, for my heart I now am on 2 different heart meds to control my bp and pulse as without it, it gets way to high to the point I need to be put in a cardiac unit for a week at a time to make sure I dont have a heart attack. My stomach I have a few meds so I can get a little food down the pain is agonizing as it is everywhere else, without the meds I throw up anything and everything it just doesnt absorb the food the way it should it takes like 3 hours longer then normal. For my bladder it really only acts up when I am in a flare which is like every 2-4 weeks, then it usually just shuts down and have to get a catheter placed in which sure isnt any fun. I really have to watch what I do as not to stress out the organs especially the heart that is probably the scariest one to put up with just cause I never know when it is going to race and pound so hard it feels like its going to jump out of my chest. As with everything when I am in a flare is when it gets out of control and everything just acts up to the point doctors have to watch everything to make sure it doesnt start affecting any other organs. The new problem I am having now is my thyroid it keeps swelling and they have to keep pulling out fluid so not to damage it, it burns so bad and feels like I have a golf ball in my throat if it continues this way they will remove it.

Pain free hugs to all
Sam

Hi Kathy,

Last summer I had a terrible time with IBS. It was when my RSD was really flaring and I had just switched to Fentanyl to control my pain. The spreading had gone from my URE, cervical spine and head into my right leg during the previous 12 months. I started Lidocaine infusions in July and by Sept or Oct my IBS pretty much resolved. But the heat of the summer may have had something to do with it also. In addition to that, I also had those RSD intermittent shock waves into my chest, usually in the evening when I was trying to sleep. Those stayed around through the at least 3 or 4 Lidocaine infusions, which helped to settle things down a bit. Unfortunately, the infusions never helped my head and shoulder get all the way better.

I also thought that I had started menopause, because my periods stopped. And I had sharp pains in my lower back. But as soon as started ketamine, all that changed. I immediately started menstruating again, and my back is fine. So I'm guessing that I had pelvic involvement with my RSD and didn't know it.

I've also been on blood pressure meds for a long time - my pulse and BP were out of sight last year. I take .10 of clonidine 2X a day and it helps.

XOXOX Sandy

Just as you said Sandy..it is hard to decide if the involvement is there..But the reason I ask is I "seem" to be having some issues..Like eating then my food lays in my chest for hours and stomach burn, I take antacids but not always a help.. but now no appetite cuz of the constant full feeling.. last few days now some GI issues... Chest pain and heavy heart beats/rate but I have been heart meds for years due to what was believed a heart aliment way long ago.. During my visit with Dr. S in March, he pointed out possible internal involvement and asked I watch for stomach and swallowing issues..of course, I don't want to attribute this to RSD if it didn't sound right but I am always on high alert since my appt... RSD ... ggrrr.. lets make up a nick name for it..a nasty one!! tee-hee..

Boy Sandy..I bet you wished the menstrating would be a bonus to kiss good-bye but no luck there... RU ready..I hope your pain stays at bay and no more advancement..The pain is certainly bad enough..Sam...you certainly have your homework cut out for you..constant internal organ monitoring.. so sorry!!

I thank you for your time and sharing such great advice with me..Ya know I love ya!

K

So sorry Kathy and Sam for your issues.

With your leg involvement it may always be a problem to keep moving. But I attribute my high levels of physical activity with perhaps keeping some of my RSD problems at bay. I walk as much I can (I have to push myself, my friends and little dog keep me going a lot of the time). I work in my garden with my arms even though I usually pay for it later with a headache (I am **** about my plants). And I try to keep up some sort of order around the house (OK, so if my mother were to come visit I would need an army to help me get it where it would need to be, but it's basically in OK shape).

Keep moving...somehow, someway. You have to. Or you will get worse. Stay with the PT. Our insurance plans will usually always cover that.

The best of luck to you...XOXOX Sandy

Kathy, I too have been going thru some terrible internal RSD pain. I don't know what to do. the pain in my stomach and my GI tract is excruciating. My Dr. has admitted me to the hosp. 2 times in the last year for pain management and we called in a Gastro Dr. I had an endoscopy and a colonoscopy,fun, fun, not! The Gastro Dr. said I have erosive esophogitis(sp) and erosive gastroentinidus(sp) and was told to take prilosec in the morning and in the evening. I have been doing this ever since and this most certainly is not helping.I also have a major problem with the IBS/constipation. The pain is the worst in the morning in my intestines, so bad that I don't even want to get up because I know what the next 4 hours are going to be, pain, pain, pain. I am up by 5-5:30 am as my husband and I are raising our grandchild and I try not to let her see me in that bad of shape, she does not get up until around 7:00 am. I also have the heart problem, My pressure can get up to 200/110 with all this pain and grief, so then I was put on 4 different pressure meds. I'm really at my wits end with this and was wondering if Dr. S had told you what to do if it got inside? Or if you knew of anything we can do for this. I love my Dr. but his answer is take a laxative everyday. I tried this and it's not the answer either, so basically the first 4 hours of my day stink from the intestinal problems and the rest of the day is just full body RSD pain, anyone have any suggestions, I am becoming pretty desperate and I do not want to end up in the hosp. Any info. would be appreciated, and I am sorry I went on such a rant!
Wendy

I too have not been diagnosed with 'internal' but feel my right lower abdomen has been touched by RSD besides my main complaint of my lower right back.

Recently my PCP was trying to determine why my lower abdomen always had a dull ache for the last year. She (externally) poked and prodded that area so much it made my husband wince. Three days later I ended up in the ER with such pain in my abdomen. Of course, nothing was wrong with me. I had been having some constipation problems prior to this event and **GROSS ALERT** every time before I had a BM it hurt the worse.

My pain doctor said later, remember, you respond differently to pain regardless of what instigates it.

Since my constipation bout I have had great success with eating almonds and raisins as a snack every day.

Oh, I have a nickname for RSD - Really **itty Diagnosis.

Mycah
thanks for responding, i have the "GROSS ALERT" almost everyday.But your Dr. is right we do respond differently to all sorts of pain that would not bother regular people.

I will definetly try the almonds and the raisins.

I think your nickname for RSD is perfect (especially with what we are dealing with.

Thanks, Wendy

It just feel SO AMAZING to find you all! I have been alone fighting this for 5 years, so scared with every new symptom that comes p that doesnt fall under any illness. my family does sits by and watches me deteriorate. with each post i read, i feel hope. i wont be posting much just reading and learning. Blessings and happy 4th to all!
Lori