Hi Everyone.

I was hoping someone could spare some advice in dealing with my recently diagnosed RSDS. I'm writing this because after doing a bit of reading I'm (no doubt) experiencing some panic and depression over the realization that RSDS is likely what I have. Here are the quick facts about my situation...

I (male early 30's) was just diagnosed by my Reumatologist with RSDS in my foot exactly 2 months after puncturing it.

Here are my chief complaints/symptoms:
* Swelling/edema of foot (top, arch, and ankle) has been present since first evening of injury. Elevation kept this under control...but sitting with my foot down for 20mins or so, it would swell up quite a bit and turn variations in red/purple.
* Skin sensitivity, mostly top of foot (especially just below toes).
* Pain comes and goes, mostly top of foot, arch of foot, ball of big toe, and sometimes near bottom/outer-center of foot where puncture occurred.
*Somewhat more limited mobility of inner toes.

My Reumatologist has started me on prednisone which I'm to take at gradually reduced dosages over a one month period. Within a day or so this had substantially reduced the swelling and reduced some of the coloring. However, moderate pain still comes and goes in the areas I have mentioned.
All the doctor has really told me so far is that he is "optimistic" of my situation and said he preferred not to discuss the potential negatives of this condition until it may became necessary. I've been on the steroids for 8 days so far but I'm beginning to wonder if they are enough.

So now some of my questions...
* I've read that early, multi-discipline treatment is best. Prednisone is all I'm taking. Is this enough? Do I just need to be patient?
* Dr. has not mentioned physical therapy. Should I be requesting this?
* Any other meds I should ask my doctor about?
* I'm trying to get out and walk on my foot as normally as possible. But too much walking initially appears to aggravate the pain in my foot (even on the steroids). Any exercise tips?
* Please, post any other advice you think may apply to my situation that may potentially affect the positive long-term outcome of this?

Thanks again for all your very informative and supportive posts on this board.
-Gravyboat

Hi gravyboat.
Have you found the RSD sticky threads above the threads list?

there is lots of info to read on those until someone comes along to answer your questions.
weekends are sometimes slower for replies.

Useful Websites & Links
http://neurotalk.psychcentral.com/thread247.html
RSD "lifesavers"
http://neurotalk.psychcentral.com/thread78732.html

I'd be a little patient as your doctor adviced. He/she seems to have much more info to give you if the steriod fails. You may not have RSD and the doctor is siding with a bit of caution. You are correct in that if it is truly RSD agressive treatment may put it in remission in its early stages. I'm no doctor nor do I have RSD but my wife does and has for several years with no treatment the first 4 years. If it were me I'd relax as much as you can, keep stress to a minimum, wait out the month on the steriod. Also if it were me in the mean time I'd look at water thearapy if possible, a warm pool to lift some gravity away from the injured area.
Good luck and hopefully everything will turn out fine!

jim

Hello Gravyboat and Welcome to Neurotalk! You will meet many great people here who i'm sure will try and help you in anyway they possibly can! I'm not sure what i'd have done if I hadn't found this forum - it's helped me so much and it's so nice knowing that people here actually understand what i'm going through fully!

I'm sorry to hear that you have been diagnosed with RSD! I hope you can find something that will help you soon and put your RSD into remission.

I have RSD in my left leg and both arms. I developed it when I was 12 years old after an ankle sprain and am now 14. I have tried all sorts of different therapies and medications but none have really helped so far. Ketamine helps me a little but my doctor doesn't like me taking it too much because of my age so I am only to take it when I am in a really bad pain flare.

It sounds like you are fairly new into your RSD? That is good, if the RSD is caught within the first 3-6 months, the more chance you have of putting it into remission.

Do you see a Pain Management Doctor? They are usually really good at prescribing pain medications and doing nerve blocks that may help relieve some of the symptoms and/or put the RSD into remission.

Many people suggest nerve blocks which might be something for you to look into, especially if you are fairly early into the disease. If you do look into those though, please make sure your doctor doesn't inject into your RSD limb as that will probably make it worse!!!! I had a Guaethidine block when I was diagnosed with RSD injected into my leg and spent 13 months in a wheelchair as I lost all coordination in my leg. I later had a ring block when I had an ingrown toenail removed and developed really bad myoclonic spasms. I have had an epidural in my back however, and didn't have any problems with that thankfully - it is just believed that my RSD limbs are extremeley hypersensitive and can't tolerate any needles and injections at all.

I have a multidisciplinary team that treats my RSD. I see a PM Doctor, Psychologist, Neurologist for my spasms, my GP, Occupational Therapists and a Physical Therapist. I have also been to Great Ormond Street Childrens Hospital in London where I had intense Physical Therapy for 3 weeks which is what actually got me out of my wheelchair, though it hasn't helped with the pain, Dystonia and other symptoms I have.

I'd suggest seeing a PT. It's extremely important with RSD that you keep moving as much as possible (which it seems like you are doing) and PTs can be really useful in giving you exercises that may help.

Hope this has helped a little. If you ever want to talk, know that I am here for you!

Take care and hope to see you round more soon!
Alison

Hi
I agree with Jinking,,,,follow your dr and also do aqua theropy,,As for some weight bearing is good for muscle tone and muscle density and desensitizing the limb,,,but to much will set you back,,Pool theropy is also a good idea,but as with your weight bearing ambulating,,go alittle, and add more as tolerated,,you want to go forwards,,not setbacks,,we all at times feel good one day and end up doing more than what we should and payfor it for the next couple days. Listen to the dr , but also with your Gut feelings,,,,exercise is your friend in this disease,,but you have to mix it up at first from the onset of trauma[I dont know how far you are out from the initial injury],,,either way keep the limb moving,,that does help push it back into remission and keeps the limp from wasting away..do all the research you can and i hope that your dr is a good one,,,As for the meds,,procede with caution,,I used the cortisteroids,,they helped ,,,but i came off of them after 3 weeks,There are numerous meds to try,,everyone has their regimen,,Less is always better,,you can always add,,,and you dont want to fight an addiction on top of the disease,,,,,,,,No stress either thats very inportant,,stress will throw you into flares,,,I truly wish you well and will pray for you ,,,,,,,,,,,,,,,,bobber

Hi gravyboat,
I'm sorry to hear that you are having some of the same struggles that I have had as I know that they are extremely difficult.
My RSD began 2 1/2 years ago and when it first started I was also given prednisone. I found that I had great results with the prednisone but only at high dosages which overtime can’t be sustained due to other health risks. In addition, this was prescribed to me prior to having the RSD diagnoses.
My RSD is in both my legs from hip to toes (Didn’t start that way but it has spread over the last couple years.)
I have found a couple things that really help with the foot / calf pain.
1) Compression socks (M-Ped makes them and they can be found at Walgreens. They help with maintaining circulation and decreasing swelling, which are two things that I have problems with in relation to the feet / calf.
It sounds like you are in the early stages of RSD and that is the best time to try to get it in remission. I think that you should try to find a physician that is familiar with RSD, such as a neurologist because you your intuition is right as far as physical therapy being extremely important for recovery. As far as medicine, have they tried Gabapentin? That particular medicine is really popular for treating RSD. Also, something that I have found to help with the affected are turning purple / blue is do your best to keep you limb warm and even though it hurts try massage because that will assist the limb to have better circulation.
I’m sorry to hear that you have these struggles but the best thing you can do is educate yourself because most doctors don’t have a full understanding of this disease. Sorry for the lengthy answer and I hope this helps. Remember that this only what I have encountered with my RSD battle so things may be different for you.

Sarah

GB,
I'm pleased to make your acquaintance..... although, not this way of course...

I''ve had rsd since '83, including some other injuries. TBI is the big one.

I do everything in my power to "fake folks out", I look ok, (Not good, but, ok)....
So,
Im' 53 and still fakin' this basterd for 26 years.

Oddly, I find that when I use my "walkin' stick" (a very specialized item, not just a cane),
That i'm given space. Which, is nice, in this modern day of rush.

I'm full body ,and know exactly what you speak of.
Please, don't be shy, it's too important. PM me anytime, and I will get back to you!

I'd like to talk to you more about your maladies.
I may, or may not, be able to direct / help you.
Yet, I pray that I might be able to.

As far as what your doctor suggests,
Please,
be sure he's a Top Doc in RSD?
Is RSD the only injury that you have? (I'm sure it's the most painful, but often, there are underlying causes)....

Please, Be sure your doc is the best, in your area.
(I do NOT want you to doubt him/her, but, it's good to ask).
Too often, Docs that know a little, like to use us as "Test Dumbies"....
I was one for almost a decade.

Other than this,
I don't have many questions, but, I'm surely here, if you'd like to ask some.
Click on my name, and choose PM me.

I'll do my best to help you.

This basterd of a disease took two business' and my family from me.
I surely don't want to see this happen to anyone else....

I'm here for you, and ANYONE else!


Pete
asb

Hi Gravyboat and Welcome to Neurotalk,
You'll find so many caring, knowledgable, friends here. Please know we care for each other and are so sorry you have this diagnosis. It is good you good early diagnosis.
RSDSA-the national organization for RSD is great site for information. They had their annual meeting here is Scottsdale, AZ this year. It was wonderful to attend. You can go to their website and put in your zip code and you'll receive a name and phone number for closest RSD support group support leader. Our's meet one's a month, and this Saturday we had a RN speak on anti-oxidants and superfoods and importance of healthy diet. Another good website is rsdrx.com Under Puzzzles List is 146 questions about RSD and Dr. Hooshmands answers. He is retired, but this website has a wealth of good information.
I have had RSD 14 years and wasn't diagnosed for 4 years. But because of frozen shoulder following surgery, my surgeon sent me to rehab Dr. who supervised physical therapy for a year to get range of motion back. I also did a year of massage therapy just before p.t. I went in remission for a year plus then got frozen shoulder in other shoulder= more therapy and massage another remission another year or so. While water skiing pulled hand. Misdiagnosed, knew I didn't have rheumatoid arthritis-negative tests so went to a good sports injury group and saw the orthopedic hand Dr. who diagnosed RSD in 1 minute. nuclear med tests at the hospital confirmed it. Started me in physical therapy next day and tens unit. Came back to Arizona and found good neurologist and orthopedic hand Dr. more confirmed tests and physical therapy along with desensitization. Densesitization is VERY important. In addition, at home I took 6 plastic bowls and put cotton balls, coffee grounds, rice, beans, sand, & pieces of cloth and run my hands and feet thru the bowls. This is so important.
When I was diagnosed full body my neurologist suggested seeing a psychiatrist. I didn't like his two recommendations, so found a wonderful Doc in yellow pages. He is a neurologist, psychiatrist, and pharmacologist. I have been seeing him for 5 years and he manages my pain. I wasn't sleeping well at all, and that is extremely important. He was doing a 200 person trial study for a drug for fibromyalgia, which I also have. As an additional benefit, restorative sleep was a huge blessing. 87% outcome!!!! I started sleeping 10 hours and felt like a new person. I cut my vicodin in half and he cut my anxiety med in half. I'm in my 3rd month. When my toes started curling up off the floor, he had me exercising dailey in our pool. In 4 months, my toes were touching the floor again. So, I'm mobile, with the exception of one hand when I was water skiing, partially paralyzed-misdiagnosed and didn't get physical therapy soon enough.
For me, counseling was very helpful. It's a huge loss in your life, and I needed to grieve and learn tools to deal with the pain and loss of former life.
I use music, meditation, prayer, visualization, deep breathing, biofeedback, swimming, stretching, scented candles, journaling, reaching out to fell rsd friends here, and my family and friends. I tended to isolate myself early on and that for length of time is unhealthy. I am hoping to start traveling again. Short trips at first. I'm building up my stamnia.
Keep moving- read read read-Swimming water needs to be 86 degrees. For me, it was one of the best exercises. I still use massage.
Hope the best for you, you are in charge of your health and in charge of finding a good Dr. That's why a local group many times are aware of who is active in RSD and who is not. I'm forever grateful, I flew from Arizona to Oregon to the sports injury group and got my diagnosis. Most large cities that have national sports teams also have excellent sports Drs. When I came back from Oregon to Arizona, I found the physical therapist that had just come off the PGA Tour and opened his own business. Also used the Diamondback Ortho Dr.
Please keep in tough and let us know how you are-we care, loretta soft hugs

Thank you all so much for your replies.

The prednisone has been effective in keeping the swelling away in my foot/ankle. And I'm starting to favor my foot less and less and walk more normally. Pain comes and goes but seems to have diminished a little more. I am a bit worried though what will happen once I complete the month of prednisone I'm on.

I have been going into the gym doing the exercise bike and calf exercises in moderation--which seems to be helping me a great deal to desensitize my foot and re-establish strength in my leg I had lost over the past few months from favoring it so much.

Most annoying thing for me right now is this constant calf muscle twitching which seems to happen when my leg is at rest.

BTW. My doctor does advertise himself as an RSDS specialist and it comforts me to see he has various articles published on the subject.

Once again, thank you all so much for the info you have provided. I will post back ... hopefully with progress.

hey Gravyboat.
your not alone in this at all. I too was diagnosed with RSD?CRPS 2 years after an industrial accident to the right foot, I had several surgeries to fuse the bones and have screw and pin implants, After 2 years, it was decided to remove the implants thinking this was the cause of the pain and swelling. After 8 months of physical therapy the doctors decided to try several other options. They were, trigger point injections,accupuncture,a tens unit,hydro therapy,and a list of pain meds that would make the mad hatter in Alice in Wonderland jump for joy. All of these had either no or very little effect in relieving the pain. It has been 14 yrs dealing with CRPS and have done a lot of research on the topic. I am deciding weather or not to try a new facility that is the only one of its kind in the U.S. It is the CRPS pain treatment center and research institute in Tampa Florida. I go to a well known pain treatment center here where I live but. like others I'm ready to try anything.
What ever you do,,don't give up. I also bought a hot tub and the doctors signed off on it allowing me to take a full deduction on income taxes as set by the IRS tax code. I'd check with a cpa first to find out if you can do this based on where you live. The hot water and the massaging kelps a lot. Only on good days. By that I mean we measure our pain intensity by a chart that goes from 0 (no pain) to 10 which is extreme. My good days are usually a 7 to 8. On bad days it ranges from 8 1/2 to 9. The meds (Lyrica,Tazadone,Oxycodone,Oxy contin,Migranalm and Visteral) don't really help much on bad days but, do give some relief on good days. You have to find what works for you. It is importent to keep up with some measure of physical activity to help support the immune system and help keep up your HDL (good cholesterol). I also find some measure of relief by keeping up with hobbies to stay focused and relieving the pain.
It also helps to talk to someone who is willing to listen and offer good advise. Also, keep up asking questions with the Doctors. They tend to become distracted with other conditions. Keep plugging away asking about new procedures or techniques that they need to look into.
Good luck and keep thinking about tomorrow.