Hello first post.. Just diagnosed RSD..
 

Hi Everyone!
:Good-Post::circlelove:
Fell and lightly broke my ankle with a severe sprain:eek:
and before I knew ii I had RSD.. I think while I was
still in the cast.. I was having rolling cramps while I
was in the cast, numb, burining feet etc..They
took the cast off and said everything was normal
except "It's JUST a sprain!" By my next appointment
my pain continued to get worse.. Flames, Spasms
and lots of swelling..The ortho took one look and
said "I can't help you!" He then referred me to
a Pain Management Doctor..He knew what I had
and put me on Neurontin and Baclofen,thank
heavens..

Anyway I had my first Lumbar Sympathetic
block on 1-9-09 and it was a bad experience..
No caring on their part and lots of fear on
my part since I'd never experienced anything
similar in my life.. It didn't work, if fact my
pain was maginified the next day.. I plan
to tell them at my next appointment, NEVER
AGAIN.. I plan to go the medication route
at least, for now, until something more
effective comes along..

My question is.. What has helped you the most?
What has been the least helpful treatment?

Thank you for your help.. :D
Pauliana

Welcome!
 

Welcome Pauliana,
I'm sure being on an RSD forum was probably something you could have never dreamed of. I was shocked when my brother, a doc said "has anyone mentioned that you might have RSD?" Then I told him "yes" and they are sending me to a nuerologist. That was 20 years ago this July! My RSD sarted from a right shoulder injury. Then I had surgery and conscequently the shoulder repair caused spread. The RSD is now full body. I have been through three series of 10 each stelate ganglion blocks, an upper thorasic radiofrequency sympathectomy, and every medicine one could think of. I was recomended for a stimulator for all four extremities, but decided against it days before my surgery. My treatment is now, RSD diet, suppliments, antioxidants, (grapeseed included), juicing, yoga, meditation and Hyperbaric Oxygen Therapy.
This protocol works for me now. I think everyone eventually finds what works for them and makes the best of this situation. I have learned to pace myself and make changes in my lifestyle that allow me to live with the least amount of pain possible.
I'm sorry that you have to be here, but you will find a great group of supportive caring friends here. I wish you all the best. Ask away if you have any questions. I'm sure there will be lots of other support and advise.
Love Diana

Hello and Welcome to NeuroTalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!

I'm so very sorry to hear that you have RSD and I really hope that you find something to help you and ease your symptoms real soon:hug:. Your story sounds pretty similar to mine - I was told I had "just" a VERY bad ankle sprain and I was placed in a cast which made things soo much worse!! We had to go to 5 different hospitals before I got an accurate diagnosis as no doctors had seen a case of RSD before so didn't know what to look out for. I developed RSD when I was 12 years old after an ankle sprain to my left leg and it has since spread to my right arm - I am now 13.

Nothing has really helped me other than Ketamine. My doctor was VERY afraid to use the Ketamine because of hormones etc but eventually decided that it was worth a shot. I had a splint moulded under Anaesthetic as I suffer from Dystonia as well as RSD and it was decided that they would do a Ketamine epidural as they knew the splint would make my pain worse. The epidural helped and it took my pain from an 8 and a half on the pain scale to a 6ish. The Block wore off after a few hours and I was later put on Oral Ketamine however I am only allowed to take it when the pain is unbearable as my PM Doctor feels that it could make me worse.

I'm sorry that you had such a bad reaction from the nerve block:hug:. I have only had 1 nerve block other than the Epidural and I had a Guanethidine block. My PM Doctor injected directly into my leg which has RSD and it made me soooooo much worse!! When I woke up from the block, I was unable to co-ordinate my legs and kept falling backwards and spent 13 months in a wheelchair. It was only after I had the nerve block that we found an article on the internet stating that you should NEVER inject directly into an RSD limb unless you absolutely have to ... my PM didn't know that at the time unfortunately. My Doctor wont do any more nerve blocks now and I am pretty thankful in a way as I DON'T want to go through that again at all - it was awful!!!

I really hope you find something that helps you soon! Please bear in mind though that no two cases of RSD are the same and everyone reacts differently to different drugs, treatments and procedures etc.

If you ever need someone to talk to, please know that I am here for you because I DO understand some of what you're going through!!:hug:

Love, Alison.

Hi Diana!

Thank you for your kind reply. :) Just wondering about Hbot treatment. How
often do you get your treatments and have they helped you alot? I am really thinking about trying this..I am looking into the closest location. 20 years... that is such a long time to tangle with this.. You must be a very strong lady.


I have read the RSD diet and have made those changes to my diet as well..

My foot is so swollen I am unable to walk..Neil bought me a walker and I am able to use the front part of my foot and hop with my "good" foot. It doesn't want to be the good foot..I usually make it only about 4 '"steps" LOL I am trying several times a day to improve my walking. I do PT twice a week with a great therapist who is familiar with RSD. She recognized it right away when she saw my foot. She does the milking massage to get the swelling down..and range of motion exercises.. She knew about not using ice ever..
Info about RSD is getting out there!

Many thanks and I wish for all a pain reduced day!


Hugs!
Pauliana

Ali,

Tis terrible you are afflicted with RSD and so young too. I feel for you as I am becoming very aware of the pain and frustration involved.. I am 53 and felt active and young at heart before this hit me.. I am still young at heart although I am struggling..

You are so right about everyone reacting differently to drugs and treatments..

We do have a similar start to RSD don't we? Those darn ankles anyway..

How is your splint working out? Is it helping with your Dystonia?

Hugs and many wishes for your improvement..Hugs to all,:grouphug:

Pauliana

Thank you so much for your kind words - I truly appreciate them!:hug:

I really feel for you - it isn't fair that you should go from being really active to not being able to do much. I totally understand how you feel ... I used to always be going out with friends shopping or playing sports and now I just seem to sit in the house where it is warm as the cold weather affects me!

I haven't been able to wear the splint much. The PT's measured it wrong and the Orthotics Doctor put the straps on the wrong side and they were digging into my skin and hurting me too much. My PT's told us to take the splint back and tell them to correct it but they just said that it was fine and they couldn't do anything with it!! My PT's couldn't believe what they said and told us not to attempt to use the splint at home as it could possibly dislocate my ankle as the spasms are so strong but to take it back to my next PT session and see if they could do anything with it.

I see my Physical Therapist's next Wednesday. I used to see them weekly but haven't been able to go as my grandad passed away not so long ago and I just didn't feel up to going. I was supposed to be going to Great Ormond Street Hospital (we live in the UK) this month for my leg putting in a full leg cast to try and correct the Dystonia but I don't want to go as it scares me too much!! My leg was casted in the beginning of my RSD and it made me so much worse so I don't want to go through that again if I can help it!!

Hopefully the splint will work once it is corrected (if it can be!). Thanks again for your kind words, I really appreciate them and if you ever need anyone to talk to, I am here!

Hi Pauliana

I am soo sorry to hear we have another with RSD. I am glad you found this forum though, because everyone here is is soo caring and understanding.

Aside from the pain meds I have found that any kind of distraction can help me deal with the relentless pain. I use the computer and video games to help me distract myself from thinking about the pain so much.

I know that isnt for everyone, but if you have a favorite hobby, or something you like to do that you are still able to do would be something to try. When we focus our attention on our pains, or what we cannot do anymore, it tends to get us down, and actually can ratchet up the pain levels.

I do hope you find the combination of treatments, meds, and activities that will help you the most. And mostly that you are able to conquer RSD and become that whole person you once were. :hug:

A little HBOT info
 

Pauliana,
Thanks for the kind reply! I an probably one of the biggest advocates of HBOT. Well, besides my dear friend Vic C (RIP my dear friend). I am also one of who will tell you, it just may not work for you. Everyone reacts differently to different treatments. With HBOT the first thing to happen for me is the swelling goes down. Secondly, the HBO reduces inflammation. It supplies much needed oxygen to our damaged micro vascular systems. Which, by the way it causes new micro vascular systems to form. The pain goes, with the swelling, and inflammation. The HBO also increases stem cell production by 8 times, which promotes healing. I maintain good results and have bought a chamber for my home. There are others here who have done the same. HBOT is not as easy as it sounds. Some people can not clear their ears. Others have tried it and can not stay in a confined space. Some have tried it and have not seen the results that I have. It is the least invasive treatment for me, producing the most results. There is a lot to be said about HBOT and the post just doesn't allow for, really detailed information. If you would like to pm me I'd be happy to talk to you or email some information.
It sounds like you are on the right track. I look forward to getting to know you, better! Please feel free to pm or call.:hug: Diana

Well hello there..
 

Welcome Pauliana

Please feel free to look back through the pages of this forum (page #'s found at the bottom right) for past information on almost any topic.
And or just ask.. the folks here are great and chances are you'll be helpin out someone else by bringing it up.

I am very sory you have been diagnosed with RSD but you have come to a good place for suport, friendship and research on this diagnosis.. alot of us have found that the best way to take care of ourselves is to know alot about RSD. And please feel free to cry on shoulders if needed we all do at times.

Nice to meet'cha Pauliana
:hug:
Sandra

Pauliana,

I would like to welcome you also.

Your question was about what has worked or not worked for people. You will see that RSD is one of those things that will respond to different treatment in different ways for different "victims" (that's us.) There are many people on this forum who have had RSD for a long time and have tried all sorts of things. What might work for me may not work for you, and visa-versa.

If you read the posts, you will get a sense of people's 'favorite' treatments and what typical side effects to expect. But remember it might not be for you.

This is not to be discouraging -- quite the opposite. Take people's recommendations with the understanding that if it doesn't get the results you expect, try something else. Keep searching for the treatment or combination that works for you. Don't give up and, most importantly, don't allow your doctors to give up. There are plenty of things to try and more are being developed all of the time.

Remember, we are just a group of friendly people trying to be here for each other. There are no stupid questions. You can also use this board to rant if you like. We will understand, because we have all been there.

Good luck and, again, welcome. :)

Mike

I am so sorry I am so delayed in welcoming you to the forum. I, too, was just diagnosed with RSD about 5 weeks ago after ankle surgery. I am lucky (in a way) to have been diagnosed just a week after my symptoms began (they were so clearly obvious) and started treatment as soon as possible. I am currently undergoing a series of sympathatic nerve blocks in my spine. For me, they seem to be doing SOMETHING.....not a cure, but the allodynia is better, as is the swelling in response to standing (I used to not be able to stand but for a few moments).

The biggest hurdle is getting your limb in use again......taking whatever pain meds you need to in order to successfully do your PT. NOT pushing yourself to the point of pain, which will only set you back, but just to that point to regain flexibility. Like I said, the swelling was so profuse in my ankle that I could not successfully move it. The blocks seem to have helped that. My PT did the "milking" massage on me as well.....told me to repeat several times a day. Epsom Salt soaks are very soothing and there is clinical research that shows that it helps down to the cellular level with the swelling.

I am VERY assertive with my doctor and the nurses about proper pain management during the IV and injection. I make no bones about telling them they need to give me more meds so I don't feel it, or that they need to acquire proper numbing meds for my IV. I take every chance I get to educate EVERYONE about RSD.....so many, even in the medical profession, have never heard of it. I am SO sorry for your bad experience. I, too, had one bad experience at a different hospital than usual (I have a block scheduled there tomorrow morning). I swear, I will NOT let them put an IV in me and go through with this block without numbing meds.......PERIOD. They poked me 3 times with the IV needle before they got it in just seconds before they took me into the room to be injected. I was awake and aware and freaked out the whole time. My other four blocks were lovely......no problems at all (except my allergic reaction.....they give me benadryl in the IV).

Again, SO many people here on this forum are so sweet and knowlegable about this disease. Many people have tried many different approaches. You have got to decide what works best for you through trial and error. I have heard that an aggressive, multidiciplinary action is the best course (i.e. meds, blocks, therapy, etc....).

Please keep us posted on how you're doing, and write with ANY questions you may have. I actually trust the people that LIVE with this disease more than I do the docs that may read a medical article every so often about it. Just don't be shy about getting several opinions or saying "no" if you feel uncomfortable. It is OUR body that is affected......NOT theirs.

BTW.....my RSD has already spread to my other foot (just 5 weeks into it and WITH injections). I encourage you to act quickly and take very good care of yourself. Read, read, read as much as you can......dig into the internet and focus on articles printed in this decade especially.

Best wishes for a pain managed evening to all!!!

Pauliana,
I just wanted to welcome you to the site. I am so sorry that you had to be here because of the monster rsd, but I am really glad that you are here. Everybody here is so awesome and they take the time to read and answer any questions you may have or if you just want to talk to get things out you are more than welcome to do that as well. You have come to a great site. I will say it again welcome.

Sincerely,
Tracy(screwballpookie)

Ali,

I am so sorry about your Grandad passing away.. Sending you my sympathy from afar.. :hug: Good Grief they even messed up your splint. They should
make that right and correct it. Good luck in making them to the right thing..

Allen,

Distractions definitely help.. Funny movies, I have several friends I email, a couple of hobbies.. They all help keep my spirits up! :)

Diana,
HBOT sounds promising. I am looking into finding a location that has one..I will PM you..Thank you so much! :D

Sandra,

You are so right, it is best to know as much as possible about this demon RSD..I have found that my doctor knows some about RSD but not as much
as I would like..Nice to meet you too! :Wave-Hello:

Mike, Thank you for the welcome..I will be trying some different things to see what works for me.. I was discouraged with my first lumbar block.. so I will stay with Neurontin, Baclofen and Tramadol for now..:I-Agree:

MomiINPainRSD..Greetings Neighbor! I do have to get back to walking. The swelling is making that a challenge for sure.. I can now move my toes and my ankle I can't bend at all..I will keep working at it.. :hug::circlelove:


I was a bit too over zealous with my walker and managed to pull muscles in my chest,, MY PT Lynn wrapped me with an ace wrap.. She told my Neil what to buy and he came right back with it..She said she would have to charge us much more for it, when he could just buy it at the drug store.. She is always looking to save us money.. Anyway Lynn says I have to deep breathe or risk pneumonia. Since breathing hurts she was afraid I would do too much shallow breathing.. She said to be sure and take vitamins and also vitamin C. She is so motherly! I really didn't need chest owies on top of the foot and leg thing and I hope it doesn't turn into RSD.. I feel like such a mess.. Oh well...

One day at a time.. Hugs to all.. Here's to a cure for RSD! :grouphug:

Pauliana

I'm another neighbor.

For me it's a matter of avoiding triggers and stress. Ghinko biloba, neurontin for pain, and medications to keep me on an even keel appear best. I also need some medications for flares and insomnia.

Exercise of all sorts are great but I have to be extremely cautious with these because they are triggers.

hi you are so young to be dealing with such a horrible illness. My daughter is 15 years old and also had an ankle sprain, several years ago. She has been suffering for a long time as well. Have you ever gone into a pain rehabilitation program for children? My daughter went to the Cleveland Clinic in Ohio, It was an in hospital two week and one week outpatient. They have a pediatric one. It really helped my daughter and also many children in wheel chairs. One girl had drop foot and walked out using a cane after 8 weeks. I know you live in the UK, but perhaps they have one there. You are a very strong young lady! I will keep you in my prayers.

Hi Paulina,
One thing you might find helpful is mirror therapy. I have been doing this lately, and for me the results are more subtle because my issues aren't as severe anymore. My PT did say, however, that when this is done early in the disorder that people often feel immediate and substantial relief. Good luck--I hope you can find something that works for you!! Also, I was diagnosed about 18 months ago, and I have improved dramatically (it was caught early--6 weeks after surgery). So I wanted to offer you a bit of hope :)

Thank you so much for your kind words - I really appreciate them!:hug: I'm so sorry to hear that your daughter has RSD at such a young age also - if you would ever like anyone to talk to, please know that I am here for you because I do understand how scary it can be at times dealing with such an awful condition!!

I have attended an Intense Physical Therapy Program at Great Ormond Street Childrens Hospital here in the UK. The first time it really helped me - I was in a wheelchair and they got me walking short-distances within 3 weeks but the program didn't help with my pain at all. The PT's later asked for me to attend the Program again as they wanted to try and ease the pain and get rid of the Dystonia that I have and it didn't help me at all. I was due to return back to the program now to have my leg put in a full leg-cast but we chose not to go as the thought of it REALLY scared me and I have heard so many horror-stories about casting an RSD limb!!

I am SO glad that the program helped your daughter - that is such great news!:hug: They only have one program here in the UK that specialises in Intense Physical Therapy for RSD so it can take quite a long time to get onto the program. I really wish they would have more programs like this here in the UK as we had to travel 3 and a half hours to get onto the program and it meant we had to live away from home for 3 weeks which was pretty stressful lol.

Take care and send my love to your daughter and if she ever wants to talk to anyone, I am here!