Nigel -

Let me think about Questions 1 and 2 a bit, but 3 has me concerned, so I can go there with some experience. My RSD started with simultaneous tears of the peroneus brevis tendons in both feet/ankles on a machine at the gym, as confirmed by MRIs. After 6 weeks of the pain getting worse with my feet in elastic supports and on high doses of anti-inflammatories, my kindly old ortho suggested casting them for an equal length of time in order for them to "rest,"' big mistake. Pain zoomed out of control, both times. I say both times because I was enough of a fool to allow them to be done sequentially, even though the first was a disaster before the second started. This was in 2001. Even saw a well regarded pain doc mid-way through the first, who just upped my dose of Vioxx, a now withdrawn Cox-2 anti-inflammatory that probably contributed to a heart attack I had 3 years later. A rheumatologist finally came up with a tentative Dx of RSD a couple of days before the 2nd cast came off.

A couple of years later I saw a hot young ortho for an unrelated knee issue. He told me that they were then doing test castings for any proposed immobilizing surgeries (ankle fusions, etc.) and if pain cut in at any time from the immobilization, the cast came off then and there, with no surgery to follow.

All I can say is that I would want to consult with a number of excellent orthos AND physiatrists before committing myself again to any prolonged immobilization. There has to be a better way. Not to be flip, but I could see spending 18 hours/day in whirlpool therapy as a much more attractive option. That and some very gentle stretching/"nerve gliding" exercises in physiotherapy. But to tell you the truth, just the thought of 24/7 immobilization is extremely disconcerting for someone who already has RSD/CRPS.

Mike

ps Just out of curiosity, is this treatment being suggested by Dr. Rohr or someone else?

I am so sorry this did not work for you, but perhaps you have uncovered the underlying problem.

I have one thought for you. As a person who spent several months on crutches with no weight bearing when I had a broken right foot, which was also when RSD showed up in my right foot... Take very good care of your good leg and your upper back and shoulders if your going to use crutches or a walker. I ended up having the RSD spread to my upper back, and my left shoulder - I think because of how I was using the crutches, and how long I used them. Then, because I favored my right foot I over used my left, and developed stress fractures in it two years later...and the RSD spread there.

I am not saying this to frighten you. Just to caution you to be aware to use the crutches properly, make sure they are adjusted to you, get massages or whatever you need to do to keep your shoulders and back in good shape! Don't ignore the signals when your body tells you that you are over doing it. I did, and I am paying for it.

All the best to you!

I though imobilization is a big no with crps but not sure on how to proceed with this tendon issue. It has been constantly been pulled out over the past eight months and wont go into detail as its been crazy. Pt pulling out my leg as he thught i had scaring from my previous op over and over again. Dr rohr now believes that this was the cause of my rsd as its the most common mistake pt do to you and stress out points in our body to much. Not to mention a key hole straight after and then 4 weeks of crazy pt 2 times a day in rome. So my tendon has passed through hell and this epidural was the last straw. So i have a pritty messed up tendon at the moment and it reacts crazy to ANY movement which wakes up the rsd. Dr rohr now understands that there is definatly an underlying physical problem which is not letting the rsd to settle. I have given him my previous mri which points out this tendon problem and he is going to discuss it with a collegue of his in this field. No, dr rohr didnt say i need to go in a cast for 6 weeks as he told me himself this would be a bad idea for the rsd. He however can see that i cant move any part of my knee due to the tendon so i am bandaged up for the moment. Tomorrow i will be doing the standard boster of ketamine that they use in the us to see if that can calm the rsd pain and then dr rohr will be deciding a way to calm or settle my physical underlying problem. The bottom line is that a tendon needs rest to heal and if i walk to soon etc i will get back to where i started so it makes more sence to res it for a few weeks then go round in circles forever.

Again, dr rohr is great and would reccomend him to any one as he likes to really help people. It was unfortunate that he didnt know about this tendon prob before and we had to come to this stage to find out however rsd is very difficult to understand and in my case the acl op was to missleading. Also, i dont believe that there are many doctors that understand rsd as much as he does, you can see he has loads of experience dealing with this condition. Again, would reccomend him to anyone. The hospital is more like a hotel if you as me. Really professional...would def come back hear in the future if necessary.

I have no idea how much longer i need to stay hear but it seems the doctor will def not let my travel in this state and will do all he can to get me pain free.

Hi Nigel,
I am so very sorry that your pain went crazy. I find it strange that the doctor increased the dosage and yet you still felt normal?? Wow, that is a bit strange with ketamine. I have spent majority of the last six years bedridden and esp in the last 10 months and have found that doing stretching exercises in bed are great for building up the strength in your body. I even use my cane in one of the exercises while lying on my back by just pressing up and down with it (you can even use soup cans...one in each hand and I have actually used my Bible as a weight too)!! It may be a small thing to do but you have to start somewhere. You were able to do so more beforehand and had built yourself up so really try not to lose all you have done that is good for your body. If you can't move your knee then don't do so but move your ankle up and down and do circles with them. It is amazing how ankle pumps and doing cirlces with them can really build up your shins not to mention it is good for circulation. Just try to do what you can with the rest of your body. I actually exercise at midnight since it is the only time of the day my pain is lessened a bit and I have more focus...crazy but at least I do it.
Best of luck and stay focused and try to stay positive.
kathy d

Nigel, you might want to look into 1) cold laser therapy and 2) platelet rich plasma therapy.

1) Cold laser therapy is usually done by chiropractors and most insurances won't pay for it. There are two classes of lasers that are used for cold laser III and IV. Class III work well for not so deep muscle pain and if you have heat sensivity. Class IV goes deeper into the tissue and if you have heat sensitivity you might not be able to use it. There is some recent literature discussing the use of cold laser therapy on tendon and they show some good improvement in pain and function. It can go deeper than ultrasound for treatments. I have been doing cold laser therapy, both III and IV, for about 2 years and it helps with all my trigger points. I have tendinopathy of the adductors but my legs are too heat sensitive to use the class IV laser to work on the tendon and the class III doesn't seem to do much for the tendon. At least on me.

2) Platelet rich plasma has been used with some controversial success in patients with tendinopathy. Most insurance companies won't pay for platelet rich plasma yet as the data on its use is mixed but it might be something to consider.

You should be able to Google both of the terms for additional information for treatment but wanted to give you some suggestions to look at to help with you hamstring. Good luck and you are in my thoughts and prayers.

Dear Nigel,

I am sorry that you are still having such pain in your knee, how awful for you!! The first few years of PT were a disaster for me, they very likely contributed to my RSD, too. I had extremely aggressive therapists who worked for my orthopedic surgeon that had my shoulder and neck spasming out of control. Then, after my RSD diagnosis, I had someone I liked, but who used to hurt my head once in a while just to experiment I think - curiosity about RSD no doubt, and how much pressure it would take to make things spin out of control. Only the head was connected to me and I had to live with the horrific pain when he was done! Ugh..never again!!!....

Have you tried heat? And a muscle relaxer? I use Skelaxin and a heating pad and its been a good combo for me.

My pain improved over time after my ketamine infusions. I noticed I felt somewhat better right away, but then I noticed steady improvement day after day. And with each booster it got better. I have had definite setbacks with the long hours and stress of a full time job, and the nasty weather patterns we get here in the northeast. And I do need to use my arms occasionally, which will cause bad flares. But you should give the ketamine some more time to work....it is still early for you.

I truly wish you the best and please keep in touch. xoxox Sandy

Thanks for all your comments and suggestions guys! I really find hot packs and warm showers relieve my pain. I think the main reason i was improving well in malta was not only down to lyrica and mobilization, it was down to my tendon slowly healing after the rough ride it had which helpt "calm down" my rsd and together it was only uphil for me as i was able to walk long, bike harder, swim etc etc. Stretching was the worst thing for my rsd as it would inflame my tendon without me knowing that would trigger my rsd pain increase and symptoms. For some reason i feel as though if my tendon had to fully heal and i would have no physical restrictions then my rsd would automatically go. I could be wrong though.

Last night was bad and got up at 4 as lying down is putting too much strain on my tendons as it is again so badly damaged. It sucks as today i had my second ketamine booster 600 mg and i feel as thoigh they work better that the inpatient infusion for me however my tendon is really messed up amd keeps getting pulled which dosent allow the ketamine to work.

Im in a dimela as although my rsd pain is more relaxed when resting the tendon, all this rest is causing my foot/ankle to really spread and go red and cat put my feet up as it hurts too much to lye down or put any kind of stretch or activation on my hamstrings. moving my neck downwards also gives me shooting pains just to give you and idea..

Will speak to the doctor tomorrow to see what we can do about the tendon but as far as i know a tendon takes time to heal and there is no quick fix. Apparantly its only managing to control the tendon pain to be able to tackle the crps pain but the only was to contor it is to sit down for hours and relax my hamstrings, everything else causes damagin cutting shooting pain. That causes my swelling/discolouration to get worse....its a vicious circle and i might just need time and patience for my tendon to heal and then be able to tackle my crps. I really hope it didnt have to be this way and there was a different approch to how i could possibly tackle them at the same time instead of resting for weeks causing more muscle wastage (which i curently have alot of and cant affory any more) swelling etc...the thing that sucks the most is that i cant even have bed rest to help my back and posture and possibly elevate my knee for swelling...

If anyone has any suggestions or ideas of a better way please let me know. Have been thinking of one for a while but the only thing i could think of is a brace to speed up the tendon healing, hot pack, hot showers, volteran cream, glucosamine, omega 3 and will look into buying a home ultrasound to use at home twice daily once im back in malta.

Thanks for listening,

Nigel

Nigel, I'm very sorry to hear about your tendon. This disease is one pain in the ***! If it's not one thing it's another. If it were me I'd go the distance with the ketamine and try not to worry so much now with vigorous exercise. I'm 54 and my muscles are a bit flabby--....Anyway, one thing you can look into is Lidocaine cream to apply to your sore area. Here in the States it is prescription only and can be custom mixed for strength to suit your condition. My wife still uses a weaker version of this cream but had a custom mix sometime ago that when applied to your skin it became completely numb. Whether this can penetrate deeply I'm not sure, but I applied it to my skin I could not feel anything touch it. She also had a 4 hour Lidocaine infusion with little result. You may want to ask you doctor about the cream, it may help calm that tendon. Best of luck!!

jim

Hi Nigel,

I am so sorry you are having such a tough time. I think Jim's suggestion is a good one. Perhaps you could ask your doctor to provide you with a compounded cream for neuropathic pain. The one I am currently using has Ketamine, Clonodine, Neurotin,and the following abbreviations for drugs which I guess I should look up, Imipr, Mefenam, Tetre.

What makes a cream such as this so effective is the base that is used, which I believe is a patented base. This cream is manufactured by Transdermal Therapeutics. (877-581-5444) Creams can be specifically compounded to suit your needs. You have to have a doc who is up to speed with CRPS, and it may take several tries to come up with the formula that is right for you.

I am very concerned about immobilization and inactivity for you. Both fuel CRPS and can embolden its spread. Is there any way you can get with a knowledgable physical therapist who can aid you in developing a home PT program? A knowledge of CRPS is essential so you aren't made worse, and please use NO ICE!

Chin up Nigel-better days are ahead.

Hi there. My girlfriend is a CRPS patient. While I am German, she is American and we live in LA.

We have been in Saarbruecken twice for inpatient low-dose infusions, the first one did not work well, the second one did but now after 6 months pain is returning. Dr. Rohr is by far the best doctor on this planet (and we have seen a lot). He is very busy and I don't want to bother him too much and push him as without him life will be virtually over.

Do you guys know any good places in Europe for Ketamine boosters? The problem is that in the US a single booster costs $2000 with zero insurance coverage. It is almost cheaper to travel to Europe for that. Maybe any places near Frankfurt, Germany. Any Germans here?

Thanks all!