Hi Lisa, and welcome to Neurotalk. There are so many wonderful people here with compassion and so much education. Our combined experience and background with RSD will be of comfort to you and your daughters.
It is rare, but there are cases of spread of rsd without trauma. I've had RSD 15 years following surgery. Had two remissions over a year each. One with trauma and one without trauma. I am one of few that didn't have sensitivity. I attribute that to immediate physical therapy and massage therapy right after surgery. I had frozen shoulder following breast surgery. I really had RSD, but wasn't diagnosed for 4 years. I think the massage therapy though painful, helped prevent skin sensitivity issues.
I am completely mobile except one hand is only 50% mobile. But I'm grateful I can cut my own food, peel potatoes etc. I had a year-100 therapies each of physical and massage therapy following breast surgery. The remission was wonderful, but the therapist said it might go to other shoulder and it did. Did make sense, as surgery was on left side. Got into therapy again and remission of right side. Over a year later, I was water skiing and felt a pull in left hand. Misdiagnosed with RA, and negative tests for rheumatoid, so flew from Arizona to Oregon to a well know sports injury group, the hand Dr. said rsd in 1 minute. had nuclear med tests next day and confirmed. more therapy. Eventually went full body and now internally. I also have trigiminal nerve disorder . Also have fibromyalgia.
My Dr. from New York is brilliant. He is a neurologist, psychiatrist, and pharmacologist. My toes started curling up off the floor and he had me get into the pool every day and work my toes. In about 4 months, toes were touching the floor again. I'm so grateful.
There is a website with a lot of good information. It's rsdrx.com Dr. Hooshmand treated rsd for 40 years. He is now retired, but kept his website up and has another Dr take a lot of his patients. I would encourage you to read and research a lot. I've heard of children's hospital for rsd at the Cleveland Clinic, also one in Piladelphia.
My Dr. just built two clinics in Scottsdale and Paradise Valley, with HBOT in each of them. That is what I'm going to try. I just finished a 200 person trial study. I wasn't sleeping with ambien anymore, so he put me in the study.
He teaches also. I think HBOT is worth researching.
Support groups like here are wonderful, but also groups in person. If you go to RSDSA and put in your zipcode, you will receive a phone number and name of closest support group to you. The RSDSA has an annual meeting everyyear. Last year it was here in Scottsdale. One day for patients and one day for medical personnel.
Lisa, I am so sorry for this in your family. RSD is an autonomic disorder-therefore affecting involuntary organs. our body temperature, blood pressure both high and low. our immune system. I'm very cautions on eating healthy.
Oh, on the rsdrx.com website go to puzzles list. It is 146 questions to dr. Hooshmand and his answers. Very valuable information. Question on internal rsd is on 146 puzzle. Don't use ice. Take precautions before going to dentist. My dentist use antibiotics the day I go. Also I use gas mask to relax.
Lisa, RSD affects the Limbic part of your brain. Cause short term memory loss. We can start a statement then suddenly forget a word or what we were going to see. Anxiety is part of this, I take lorazepam, to help calm me. Something a lot of us do is see a counselor. This is such a life altering experience, and the pain so difficult to deal with, many of us have been helped in seeing a therapist. Mine is a neurologist, psychiatrist and pharmacologist. a wonderful combination as the right combination of meds is critical. Neurology knowledge is important.
Please let us know how we can help in any way. One of your new friends, loretta with big hugs

Hi Lisa,

I am very sorry to hear of your daughter’s struggles. My 19-year-old daughter, Sarah, was diagnosed with abdominal RSD a few months after she developed RSD from an ankle sprain. That was five years ago. At that time, I remember how difficult it was to find information about internal RSD so I am aware of the challenges that you face. Sarah’s medical history is long and complicated and I don’t want to overwhelm you; but I pray that something I may say will help you to find help more quickly and easily than we have.

The only treatment that ever provided pain relief was hyperbaric oxygen treatments. These were a great blessing for a while but eventually stopped being an effective option. Desperate for help, we have spent the past year in constant search for answers. Although some tests are still pending, we have made progress. Sarah had seen seven g.i. doctors before the eighth finally ran the correct tests and diagnosed her with Gastroparesis (paralysis of the stomach). Autonomic nervous system tests were abnormal (Dysautonomia), and skin biopsies showed small fiber neuropathy. Although these diagnoses are similar in nature to RSD (nervous system disorders), they necessitate treatments that are not typical for RSD.

Sarah’s neurologist also ordered blood tests that indicated an autoimmune disorder is causing autoimmune neuropathies. He has prescribed I.V. immunoglobulin treatments, which have the potential to repair damaged nerves. You might also want to search organ involvement on the RSDSA web page. There is a report about stomach complications associated with RSD. The doctor who wrote this has found that Botox injections have been a successful treatment option; but unfortunately they provided no relief for Sarah.

As is the case with almost all RSD sufferers, there have been doctors who have implied it was all in Sarah’s head or others who suggested it was an eating disorder. Watching her struggle, this never added up; but I share this as I suspect that you too will encounter such ignorance.

I pray that you find help and answers soon!!

Jeanne

Hi Jeanne and Sarah, Just a short note to let you know I'm thinking of you. There is some information on abnominal pelvic pain in rsdrx.com This site is from Dr. Hooshmand who practiced RSD for 40 years-he just retired, but we still can gleen a lot of information from this website. Go to puzzles list and it has 146 questions with his answers. #127 is about internal RSD. Has some good information.
I would be interested to hear more about the HBOT. My neurologist just built two clinics in Scottsdale that have the HBOT. I am very interested in trying it. I'm 62 and have full body RSD -15 years.
What happened that you stopped HBOT? Hope you are doing OK. Your new friend, loretta with soft hugs

Has your daughter been evaluated for Shingles? Had blood work for the Herpes Zoster antibodies?

Atypical shingles can occur in any part of the body. The rash can be bright red, resembling blood. Pain may occur without the rash. The armpit area is often involved.

Shingles can occur in children. I knew a 9yr old boy who had 2 outbreaks. It depends on the person's own immune system.
Sometimes only pain presents, with no skin rash.

I'm sorry that your daughter is going through this. I worry about my youngest grandson dealing with this. He just had to drop out of football due to knee pain being so bad that he couldn't stand it. Both of his Drs. said to take him out of it. They stay calm now as long as he doesn't overdo it. I'm sure a lot of us worry about going through what you are having to go through with your daughter.

About the right side pain. I have been to 3 Drs. for mine and they say it's the RSD. I don't have a gallbladder nor appendix so that's out. The surgeon ran test on me and said that he is sure it's the RSD. Mine is actually worse in the summer time. I walk around holding my side and everybody asks me if I'm ok.

I don't think you need an injury in a certain spot for RSD to go to it.

Hope your daughter starts seeing some better days soon.

Ada

I am so sorry about your sweet daughter and you havingto endure even the thought of this being RSD... please..dig deep and work hard to get help quickly.. RSD does not always have to have a huge reason to start but once it takes off it does have a mind of it's own and it does not have to present all of the same symptoms.....As you already are aware, I am sure that time is of the essence...esp. for a young person..hopefully if it is RSD they can possibly ward off the mean intent of our crazy illness..Please keep us posted ..we care a ton and want to help you.....


Hugz, Kathy