new here
 

hi I'm new here, relatively new with rsd. interested in what kinds of doctors/specialists and treatments people have had good luck with. thanks.

Welcome Winter7. :Tip-Hat:

Someone will be along to help.

Welcome Winter7

I am sorry you have RSD but glad you found the forum.

You will hopefully get a lot of responses.

People see different doctors based on their symptoms and other issues they may be dealing with.

Many people see:

-pain management specialists
-neurologists

Since RSD can affect nerve, skin, joint, bones and tissue, some people see a rheumatologist. What kind of symptoms are you having?

Treatments are widespread and there is a lot of literature out there about the common treatments. Some are effective for some people, some less effective, some people manage their pain fairly well, some struggle. It is all over the map really.

Check out the treatments tab of this site http://www.rsdhope.org/treatments.html

Here are a just few ...

- Pain medications
- nerve blocks
- physical therapy

I am happy to tell you more but I am sure others have a lot of good info to share.

Best of luck and welcome to the forum...

Welcome Winter 7! I see a pain management specialst for my meds, and lumbar sympathetic blocks. Also, I have done intensive physical therapy, and aquatic therapy in a warm water therapy pool. At home, I take warm epsom salt baths, a heating pad on a low setting, elevation of my affected leg , and have learned "pacing" (balancing activity with equal amounts of rest). Hope this is helpful ~lottie

Welome Winter. I see a pm dr, rheumatologist, neurologist, pyschiatrist (for clinical depression and anxiety), podiatrist, cardiologist and my gp. I take pain meds that my pm dr prescribes to me for rsd and antianxiety and antidepressents from my pyschiatrist to help deal with my rsd pain. I hope that you can find good drs who understand rsd. They are out there. You just have to do a little research on them. RSD Hope and RSDSA have websites with helpful info on rsd and drs. The people here are great too and can help you out alot. Take care my friend. Sincerely, Renee.

I was referred to a pain doctor by my neurologist. It's all awkward for me, I was sent to the neuro for a combination of undiagnosed pain issues and migraines. Finally she referred me to a pain doctor who diagnosed me. My neuro says she doesn't see the point of two doctors trying to treat the same condition because things could get awkward and mixed up (they aren't part of the same clinic so records don't get shared in real time like she's used to) so I only see the pain doc as part of my CRPS management. I got released from my neuro's care yesterday for my migraines. (yay! :cool: ) And I continue to see my GP as needed to manage my other health conditions. I've seen that lots of people here end up with whole teams of doctors and I'm glad that for now I can keep it down to two.

Welcome Winter
 

Is sad to welcome people for this reason but the bet we all can do is giving you some ideas about how to,learn more about rsd, Educations is the key ,educate you ,your dr and family,is many times real challenging to other ,for us is more acceptable but hard to,do it at course because comes with so much changes and also,many things we had to leave aside to just cope with the pain.
The best place so far I found more updated is the rsdsa.org which you can dip easily follow the treatments, general explanation on how rsd work and most important , not being alone, stress is our worse enemy and sure you have somehow able to try to control your stress levels which is real,hard when you are in pain. Hope soon you get the best care you can get and some relief can be your companion soon.
Always talk about it with your family but most openly with your partner ,they suffer many times so much by not being able to help ,but the support is more important and is need it so often.
I wish soon you can tell us how you dr recommended a medical treatment and also make sure you follow the directions , rsd is real complex and hard for us many times to handle .
I wish you the best and send you gentle hugs and lots of love from Jesika .:grouphug::grouphug:

thank you so so much for all of this.
I have some specialists. some dr's have been less than helpful.
I have a lot of pain, flare ups get really bad. neuropathy, numbness, temperature problems. I'm concerned about long term damage if I am not taking care of things properly (like bone/tissue). not sure if there are ways to prevent that damage.

this is very helpful lottie! thank you so much for sharing

thank you Renee for your kind reply! it is very helpful to me.

Thanks Adalaide! helpful perspective and I'm happy you have had some migraine relief. best wishes for you and that quote at the bottom of your post made me laugh in the midst of tears so thank you so much!

thanks for all the valuable input and sweetness Jesika :) I appreciate the time you put into this too.

Welcome Winter, though of course I'm very sorry you have to be here. How long have you had CRPS?

I only see my GP and a pain specialist. To be honest, my GP doesn't treat the CRPS but she does the on-going prescriptions for the medications my pain specialist prescribes. (I'm in the UK so that works a bit differently.)

Early on, I had frequent physio appointments and did physio exercises multiple times at home. Now I just carry on doing physio on my own. I find the physio really helpful but you do need to be sensible about it.

I hope you are having a good day today. Take care.

KimA

Since RSD can affect nerve, skin, joint, bones and tissue, some people see a rheumatologist. What kind of symptoms are you having?



OMG!? I have to chime in with a question for fellow sufferers. I have been having major problems with my eyes. Now, this may be gross, but I have a problem with getting corneal ulcers. Very painful. It feels like I have glass in my eye when I get one. I almost lost vision in my left eye, I was very lucky we got it under control or it would have been too late. I'm only 35, and I don't wear contacts. So, I wonder is this related???

Your questions are so valid and also scare at the time,when we deal with rsd, all seems to be related.
So far I learned the symphatetic nerve controls sweat glands,nerves,body temperature, weight , nails and hair growing , stomach, so if you think about it all is deleted to the whole system ,if one organ don't work well there is a chain of reactions, your memory ,your sight get affected as well, a good optometrist will consider to take a picture to compare with the future pics of how your eyes inside get affected,my did and I glad he listened and care about to keep a record for the future after all ,rsd is neurologic and the brain is mostly responsible for all the changes .
I did paid extra few dollars for the picture but i didn't mind because the dr did care and suggested is good idea to keep a record of everything by keeping pictures of any change we notice,is the best advice I had receive in a longtime .
Many organs for sure get affected with medications as well by rsd controlling certain nerves,some dr decided to do some symphatetic nerve blocks but I are invasive and many times don't last as long as we expect.
Also many people due to rsd are not able to move an specific limb as before and many develop osteosporosis which later can develop into osteoarthritis,your bones can get dystrophy due to the lack of movement what's why physical therapy is so important ,keep in movement as much as you tolerated without hurting you .
I hope still helps a little and also check in rsdsa.org for some updates, I wish all a weekend full of days of relief and less pain,with love Jesika .:grouphug:

pain, swelling, color changes, temperature changes, loss of sensation.

sorry about your eyes! that sounds very painful and bothersome.what do you do when it gets like that? I hope you find something to alleviate at least somewhat and that you feel better.

thanks KimA. I'm sorry you have to be here too! not very long, but trying to learn all I can early. is physio the same as physical therapy?
hope you are feeling well~

thanks Jesika - this is so useful. I'll talk to the optometrist about the rsd. thanks for the info about osteoporosis, i didnt know this was how they were connected. I thought something else happened with the bones from rsd. didn't know it was risk of dystrophy from lack of movement. motivating information.
I wish you less pain and more relief also!

Sorry about the misspellings ,my iPad has it own power over me and changed my words,like I said before is kind like rsd,takes control of everything and when I noticed ,I can't fixed the errors any more,but hope you understood wht I was trying to said,yes English grammar us obviously not my mayor,but my iPad made it worse!!:(
Gentle and soft hugs,remember ,just reach us with your hands nd we re here for anyone who needs us.with love Jesika :grouphug:

thank you Jesika! don't sweat the typos and stuff - no worries! I am not concerned with that. I am just feeling blessed you all are so compassionate and patient and generous. thank you again and I hope you have a lovely evening!

Just to clarify a couple of things in case there is any confusion. Osteoporosis and osteoarthritis are very different medical conditions. Osteoporosis can't turn into osteoarthritis. Osteopenia if untreated can turn into osteoporosis.

Dystrophy doesn't affect bones. It affects muscles. Muscle dystrophy is loss of muscle other than due to disuse. It can be caused by things like lack of blood flow or nutrients which cause parts of the muscle to die but it is not caused by lack of use and is not reversible where there has been death of a muscle. Its not the same as muscular dystrophy which is collective name for a group of quite different inherited genetic disorders.

Muscle atrophy is caused by lack of use or lack of movement. The muscle bulk is reduced because the fibres are not asked to work. Muscle atrophies at a rate of about 4% per week - even more if there is a change from total use to total disuse. Muscle atrophy is usually reversible once a muscle is used again (by using the limb or in physiotherapy). Even in cases where all of the motor signalling from the central nervous system has been lost such as in spinal cord injury which has resulted in paralysis, atrophied muscle can be rebuilt using artificial electrical stimulation.

Here is a site to review regarding corneal ulcers.

http://www.nlm.nih.gov/medlineplus/e...cle/001032.htm

Another site concerning Fuchs' Dystrophy:

http://www.mayoclinic.org/diseases-c...n/con-20023893

osteoporosis vs ostearthritis
 

Here is a site concerning this.

http://arthritis.about.com/od/oa/a/osteoporosisoa.htm

muscle atrophy
 

A good site for someone with CMT.

http://ghr.nlm.nih.gov/condition/cha...-tooth-disease

Damage to peripheral nerves can result in loss of sensation and wasting (atrophy) of muscles in the legs, hands and feet. You cannot get the muscles back. They are atrophied (dead) from the syndrome. And much more.

Charcot Marie Tooth Syndrome is the most common "inherited" neuromuscular disease. It affects the peripheral nervous system (PNS). Everything outside the brain and the spinal cord. There are over 70 types of it identified so far and there is no end in site.

People with Muscular Dystrophy are born with diseased muscles. Multiple Sclerosis is autoimmune (body attacking itself). CMT is inherited. If you get the gene you can be young, old or in-between before symptoms become evident. Or they may never be that evident. Symptoms vary greatly even within the same family.

Neurochic - thanks for keeping us accurate.

Thank you so much guys, this subject applies to me so well, I have ostheoporosis on my right foot and are always a chance to get into osteoarthritis ,so, all your links are so unique and important for patients like me dealing with rsd,osthoepososis and try to avoid any other bone related conditions .:confused: is so scary to think because of my bones keep rubbing agains each other every time I walk I really don't want to have anything else and suffer more,I had no chance for a fusion do to rsd and dr are not willing to risk it at all,but that means my bones will always gave me pain each time I walk,so I'm always with a non positive diagnoses ,is either get rsd spreading by having a fusion or keep with that pain and scs trying to relief a little pain,but scs never will take away my bone pain,sucks for real
Thanks for the links, I added to my link journal and sure will be so handily for many others.
Gentle hugs and hope a nice week full of relief and less pain.with love Jesika .:grouphug: