[swimtime]

PT for my son Matthew today didn't go so well. He's making very little progress. They want him to be able to do a little more each time he comes, but so far that hasn't happened. He's been in the gym for pt three times now (just graduated from aqua therapy).

The physical therapist suggested asking the pain management doctor if he would be a good candidate for cortisone shots, since he can't tolerate side effects of pain meds. Are cortisone shots for CRPS effective? Safe? Has anyone tried it with good results?

[LIT LOVE]

Originally Posted by swimtime

PT for my son Matthew today didn't go so well. He's making very little progress. They want him to be able to do a little more each time he comes, but so far that hasn't happened. He's been in the gym for pt three times now (just graduated from aqua therapy).

The physical therapist suggested asking the pain management doctor if he would be a good candidate for cortisone shots, since he can't tolerate side effects of pain meds. Are cortisone shots for CRPS effective? Safe? Has anyone tried it with good results?

Needles directly into an CRPS effected area are generally something to avoid. Is there even a structural problem that needs to be addressed?

Why has he graduated from aqua therapy? (Did he mind it? Was he making any progress?)

[Littlepaw]

Hi Swimtime,

I am sorry to hear your son is struggling so. Cortisone shots can be helpful or harmful depending on why and how they are done. I would ask the PT what exactly it is they want to achieve with this. Are they wanting him to have a systemic steroid on board? This can be good in early stages but Oral burst steroids are commonly used. Do they think scar tissue is a problem and wanting the "side effect" of atrophy to shrink it down? Or are thinking of something more like a peripheral block to the nerve to calm it down?

Steroid shots to shrink scar tissue or to calm sensitive scars can be beneficial as can peripheral blocks to calm the nerve. Both of these MUST be done with ultrasound guidance. Do NOT allow anyone to shoot blind in there no matter how many times they've done it. The neurovascular structures are very vulnerable in the foot and ankle and your son has structural changes from surgery. The PM should be able to handle the block but shots to ligamentous areas like the plantar fascia should be undertaken by someone familiar with the foot and the ways to do these injections to minimize side effects such as increased chance of rupture. I have had positive effects in scar tissue and pain reduction from well placed and cautiously administered steroid injections in the CRPS area but I have a PM&R whiz kid doc with loads of ultrasound training.
There are risks involved but those can be minimized with a competent practitioner. Ultimately the decision for or against is highly personal and highly dependent on the reasoning for the injections.

Feel free to PM me. I can give you specifics about where,how,why if that would be helpful.

Sending Healing Love,
Littlepaw

[catra121]

Prior to my RSD diagnosis...I was given a cortisone shot directly into my ankle where the CRPS is...and it was BAD NEWS. It made me much worse...you want to be VERY cautious with this sort of treatment.

I don't know your physical therapist but are they very familiar with CRPS? I ask because most physical therapists I have worked with...especially in an outpatient setting...are NOT very familiar with CRPS. They offer up a lot of suggestions and expect progress like you would get with an acute injury...and you can't treat CRPS that way. I once had a therapist tell me they were going to stop treating me because I was crying while doing leg presses. I didn't ask to stop...one of the aides stopped me...and the therapist came over and started telling me that if I couldn't do the treatments then she wouldn't be able to treat me. Anyone who knows me knows how committed I am to physical therapy and how highly I recommend it...so for her to say this to me pretty much blindsided me because I was very committed to pushing through the pain. I was VERY new to CRPS at the time and have learned a lot since then. If I knew then what I know now...I would have found a different physical therapist.

Definitely discuss the treatment with your doctor...but I agree that you should also find out WHY the physical therapist is recommending that as a treatment. If it's just because it has helped some of their other patients (without CRPS) then I would really question how much they really know about CRPS and if they are prepared to treat it. You cannot expect to see progress with CRPS like you do with an acute injury...progress is much slower and just takes more time. You will reach a point where the progress seems to move very quickly because every bit of progress you makes builds upon the last thing...bust especially in the beginning it can take MONTHS to see any substantial progress.

If the outpatient physical therapy is too intense...maybe discuss in home physical therapy with your doctor. I had a great experience doing the in home therapy...the nurse was much more open to learning about CRPS and more comfortable tailoring the treatment to my physical limits as she was used to dealing with patients with more difficulties. I also thought it was great because everything I did at therapy I could work on every day even when the therapist wasn't there because they were all exercises I could do at home with no special equipment. My progress went a lot faster and smoother because of this. It still took several MONTHS before I could walk even 5 minutes on my own with a walker...but once I hit that milestone things moved along faster and faster.

Lots of things to discuss with your doctor about what is right for your son. I suggest making a list of all the things you want to talk about and making sure the doctor doesn't leave until you have discussed all of those things. I've had to have doctors called back into the room so we could finish the discussion because somehow they just seem to vanish...sometimes when I am mid sentence...so just be prepared with everything written out so that you can get answers to all your questions and concerns.

[bluekrikit]

Originally Posted by LIT LOVE

Needles directly into an CRPS effected area are generally something to avoid. Is there even a structural problem that needs to be addressed?

Why has he graduated from aqua therapy? (Did he mind it? Was he making any progress?)

...totally agree with avoiding any needles...my daughter's CRPS was made significantly worse after two nerve blocks...now we are left wondering if she had not had them would she have gone into remission eventually instead of having this rotten disease spread to other limbs and taking her life away!!

[Littlepaw]

Originally Posted by bluekrikit

...totally agree with avoiding any needles...my daughter's CRPS was made significantly worse after two nerve blocks...now we are left wondering if she had not had them would she have gone into remission eventually instead of having this rotten disease spread to other limbs and taking her life away!!

Ugh - so sorry to hear that. What kind of blocks did she have done?

I think we all question decisions we made about our care and what doctors, PT, other professionals said we should or shouldn't do. It is so hard when you are living with this not to judge or question what is behind us. The coulda, shoulda, woulda can just about kill you. I have to try not to go there, and stubbornly redirect myself when I do because it just doesn't do me any good.

LP

[swimtime]

Scar tissue doesn't seem to be a problem. They said the incision is beautifully done, with no attachment to underlying muscle. A nerve block was tried once (with ultrasound guidance) but with little effect. We're not going to try it again as the whole thing was very difficult for him to get through.

They do seem to expect much more progress, although I keep telling them to look back three months ago to see how far he's come. I don't always see a week-to-week noticeable progress, but if I back up a month, I see lots of progress. I have questioned them about their familiarity with CRPS. But the only other place I can find that will work with kids and is familiar with this is a rather long drive so we deal with their unrealistic expectations best we can.

[Littlepaw]

Swimtime,

Glad the scar is not stuck down! and if the nerve block didn't help then why bother. There can be a place for oral steroids in early CRPS. Some studies have indicated 10mg 3x daily for three weeks. Even a Medrol dosepak could make a difference in the right circumstances. If a lot your son's pain is inflammatory a steroid burst might knock that down and allow pain reduction and progress. I hit steroids twice in my ongoing recovery. Once about 3 months in and again about 6-8 weeks later. Made a definite difference and wasn't long term enough to be a problem.

Littlepaw

[ali12]

Sorry to hear that your son is still struggling. Like him, I have had RSD from a young age (12 years old - i'm now 20).

Like the others have said, I wouldn't get any injection into an RSD limb. I had a nerve block in my RSD foot when diagnosed which caused me to totally lose my co-ordination and I spent over a year in a wheelchair. I then developed an ingrowing toenail that got infected so had to have it removed, this resulted in me developing severe myoclonic spasms. I've heard of others who have had similar problems also.

Regarding PT, I also had similar problems. I found that the PT made my symptoms worse and I would spend days in bed afterwards with a bad flare, unable to go to school etc. The PT's eventually agreed that it didn't seem to be making any difference, in fact it was making it worse and let me work on exercises at home, when I felt able rather than going to hospital. There is a very fine line between doing too much and doing too little which always seemed to be my problem.

I hope things improve. If you ever want someone to talk to who understands, especially with the school issues, having RSD from a young age etc then feel free to message me.

Alison