Does anyone have internal RSD? I'm wondering if I do. I have had RSD a little over a year and in that time have lost about 25 pounds (I am down to about 105 right now). I feel sick all the time, nausea, vomiting. My hair is falling out. I have periods where I feel okay and then....bam! Now is one of those times. I just feel sick and don't want to eat, have trouble keeping anything down. Even when I do eat, I don't seem to gain weight. Is there anything that can be done for this? My GP says it's psychosomatic and I should take antidepressants.

Hi
I recall some of the long term members talking about internal sx.
I do think it is something that can affect all parts of the body.

Have you had follow up testing to rule in /out other causes?
or second opinions, since your dr seems to be not following up???

You don't want things attributed to RSD if there is some other reason/cause...

Hi Millerprof,

I felt like I had to respond to your post.

First of all, I would get a second opinion. Please get a second opinion. It's a copout for your doctor to say that it's psychosomatic. I wouldn't be surprised if you need to take antidepressants. Most people with this condition do and are (atleast I was) encouraged to. It helps with the balance in handling the pain.

But, I want to let you know. If I were in your shoes, where I felt the way you do, I would say "this isn't normal - something is wrong." No matter what doctor tells you it's all in your head.

I had this issue when I had severe pain after I was diagnosed with TOS, had the surgery and such. That's how I got RSD. My internal med doctor told me it was all in my head after I had the surgery. I was in so much pain. I had sensitivity and stabbing pain. He said that it was all in my head and that I will need to live with the pain and that there was nothing he could do. He said - and I quote - "you know (used my name), sometimes there are things that you just need to live with". What a quack. I went to get another opinion and that doctor said "boy this looks like RSD." He hadn't seen more than a few cases, but was atleast aware enough of what could be wrong with me. Not that it was "IN MY HEAD." God I hate that.

You throwing up, losing 25 lbs and not being able to eat - there's an issue that needs to be addressed. Please get a second or third opinion. Find someone that will listen to you and your symptoms. It may be internal RSD, but also there may be something totally different going on that's causing it.

Good luck to you. Please keep us updated on what you find out.

I like you had problems w/ my stomach and loss of hair and problems in other internal areas I had my doctor and other doctors look into it and they do attribute it to my RSD finally after many test. There is such thing as systemic RSD which is Internal RSD.

Patches

Meds can cause nausea which in turn can make you sick like that too. Many people don't realize that they have a sensitive stomach till they get something and have to take meds. I second everyone else's opinion and would see another doc that is willing to do some testing to see if you have an ulcer or something that is causing your symptoms.

It's very easy to see rsd as the cause of other things that go wrong with us. Especially since we were fine before all this. Don't listen to this doc because we know it's not all in your head. Hope you can find some answer soon and really hope it's something simple and not the rsd messing you up.

Hugs,

Karen

Millerprof hi, I agree with the second opinion as your symptoms could be many things. However as other have posted , they too sound just like symptoms of internal rsd. Of course rsd involves internal organs, i have it in stomach and colon. I deleloped Irritable bowel syndrome after acquiring RSD. Also after the obvious signs of rsd were disapating, I only had the classical signs for a brief period and was not diagnosised for a year and a half, I was told by no less than 9 physicans from neurologist to internist to get over it, take valium, its all it my head. basically i was a baby they is always residual pain from a broken bone. As you probably know I have full body RSD. So certainly get a second opinion as I said , your naseau and vomitting are signs of some very bad illness as well as RSD. Take care and good luck. CZ

Hi, I think that while it can be RSD, it first needs to be ruled out that there are OTHER systemic things going on, especialy as there are many things that can be taken care of, and maybe you will have a good treatment for the symptoms. So..just because you have RSD, doesn't have to mean that any additional symptom you have is related to RSD (much as some doctors might like to have things in neat little packages...). So it is important to be tested for endocrine stuff and for metabolic stuff and blood work for all kind of other things to make sure that you don't have anything else treatable going on there. Being in pain all the time can affect your immune system, and then you can get all sorts of buggers hitching a ride into your system. So my recommendation--get a second opinion, see another GI, insist on seeing an endocrinologist, and I hope they figure out what is wrong with you AND know what to do about it.
Annie

Hi Millerprof,
Welcome to supportive and kind RSD'ers. I'm sorry you have RSD. Most of us have the opposite result on the weight issue. The meds and lack of the exercise we used to do must account to most of it. With me, my feelings of most foods have changed, my Dr. said it's the mand meds I'm on. I have internal RSD affecting my heart and blood pressure and colon. Also issues with my skin. 12 years now and full body. I was misdiagnosed and finally found an excellent Dr. who diagnosed me in 1 minute and followed up with neuclear med tests to confirm and physical therapy. He actually saved three limbs from being permanently disabled. I only have left hand partially disabled.
I kept changing Drs and recommend you get second and or third opinions. The responses you received, I agree with. Many of us with RSD and other disorders too and it's not in our head. Please let us know what you find out. You are the one in charge of your health! RESEARCH, RESEARCH, RESEARCH. Your friend, Loretta Jewell

Hi Millerprof,
I forgot to mention I read with the last month, the med, Topamax, can in some people cause loss of hair. I didn't look it up, but will and let you know. I forget the same of the friends that wrote the thread, but the thread is on Topamax. Soft hugs, Loretta