There are people getting better from blocks and equally there are people getting worse from blocks. So it's a 50/50 chance. I'd need better odds, or at least reports on the fact that THAT IS THE treatment for RSD, which it isn't. We're all different and we all react to things differently. We can't start comparing. What worked for one person, might not work for someone else. Blocks being so invasive, I'd not want to recommend them to anyone else on the chance that it might turn out to be a disaster. It's much worse than pills, pills aren't invasive. Calcitonin treatment isn't invasive, neither is bisphosphonate treatment.

I'm surprised there's not more research in the US about Calcitonin or bisphosphonates in the treatment of RSD.

Hi Ada,

I agree with you completely about what you are saying about some Pain Management Doctors wanting to push an SCS and go down that route straight away after diagnosis, even if ones RSD is only minor.

It seems that a lot of doctors want to do the SCS just to get some money and dont actually think about what risks are involved to their patients. I know that the SCS works for some but for others, it doesn't and spreads their RSD.

Over here in the UK, they will only implant an SCS as a last resort due to the NHS (National Health Service). You have to have tried all of the pain medications, PT etc before they even consider an SCS.

We spoke to my PM Dr about an SCS for me and he said that in my case, he doesn't think it will work as my pain is SMP. He also said that he doesn't do SCS' in patients under the age of 16 as they are too risky.

I don't paticulary agree in blocks but then again, when I had the epidural, I had good relief from it. My pain wasn't gone completely but was more tolerable. I think it just depends on the indiviual and how they react. I was really unfortunate to have a severe reaction from my block.

If someone was considering a block though, I would seriously tell them NOT to inject into an RSD area as it just isn't worth the risk and can make things worse as it did for me. My Doctor and us didn't know at the time of my block that you should never inject into an RSD limb and that was why I had the severe complications I did.

Like with everything with RSD, everyone reacts differently and therefore we cant determine what will work and what wont. I've seen and heard from people that have had good results from the blocks whilst others like me, got much worse from them. I guess it's one of those risks that you have to take to know how you will respond!

Take care of yourself.

It's the exact same with our health care system. Even worse. A SCS is approved only as a last resort (refunded through the health care system) for CRPS type 2, or Causalgia, but not for CRPS type 1, RSD and we are talking about something that costs about 10.000 euro which not all of us can afford. I don't understand why they would make that distinction. CRPS = CRPS whatever type. I guess it's because in Causalgia we are talking nerve damage, maybe that's why they'll refund it in that case. I think it's unfair.

Not that I'd consider it an option, it is an implant, and one that goes straight to your spine. There are risks in that too, risks that some are willing to take, others not. Sometimes I'm in doubt over it, though.

I am sorry about the bad reaction to the block, Ali. Stick with what works for you. But how do you know, right?

I myself went through the typical treatment stages here even though they didn't think it would do any good anymore. At the time I didn't know that much about RSD. I first had calcitonin injections (treatment usually lasts for 3 months), then went on with bisphosphonates. I was also on Tramadol by then. Because it was so bad, they switched me to the heavier treatment with IV bisphosphonates (used in the treatment of recalcitrant RSD) after 2 months. After that it was oral bisphosphonates for months and after that tougher pain treatment.

If only... If only we had THE magical pill that would fix it all.

Ada -

Totally agree with you that there are pill-pushers and docs who appear to be in the pocket of Medtronic (SCS/pump pushers). What I meant by my comment about "block happy" is that, at least in Los Angeles, there are by reputation docs who are only too happy to give them to the same patients for YEARS, long after the pain has to have become sympathetically independent.

Mike

What are calcitonin injections and biphosphonates IV's? I don't recall reading about them here. Are they typically only available overseas? Are they effective?

I agree with you - I would never do the SCS either. Even though my RSD started in my shoulder, the worse pain for me is my head, because a RI PM doc injected steroids into my cervical spine, SCM muscles and the back of my head. When the head pain is really bad my ENTIRE head pulses and feels like it is on fire. Plus I have trouble sleeping because I can't lie down on it comfortably. So I was desparate to try something that would give me some relief. I still work FT, since my oldest is set to start college next year. I'm not necessarily trying to give you excuses for making the choice I did, but setting forth the circumstances I was in when I made my decision. I also have a lot of faith in my doctor from Boston.

Good luck to you. If you have injections and IV's that give you some relief that is great.

Sandy

For a condition that has no cures, it all makes sense if in the body of the beholder, it helps.

My blocks did help. I have no regrets, even after 6 SGB. They are not perfect nor permanent, for me. I would have considered something much worse if the SGB's had not been so helpfull and will not hesitate to repeat when necessary!

i think that there is no guarantee for any treatment that we do be it blocks SCS pumps or what not .. everyone acts differenly and heck for that fact your RSD can change at any time any not respond to any of the treatments.

i think that its best for each to do what works best
and people are right i have seen in the last couple of years that more SCS are being used very early on and i think that those and pump should be last resort type things

carrie

There is with RSD sympatheticly mediated pain (SMP) and that is what the blocks are most efective against, thing is there is also independently mediated pain (IMP) and the blocks don't help that type of pain at all.

IMP can come in the later stages of RSD, and that is why they say that blocks can put a person into remission if given early enouph, but as we know we are all diffrent and react diffrently to diffrent treatments, some of us have both SMP and IMP very on and blocks just don't help IMP.. BOTH are CRPS even though both don't test like RSD when blocks are used to test for RSD, same symptoms etc, just that the central nervous system takes on alot of the pain channels as well as the sympathetic system.
~~

Temporary relief:
The idea is to give the sympathetic system a break I supose, you get a nice warm limb and some pain relief and the effect IS compounding over time.. infact too many blocks can have the opposite effect and actualy give a virtual hot sympathecomy to that limb, I have seen pictures in a thermography scan.. not good, caused more problems aparently.

Good luck, stop when you stop getting benifit from them because they are invasive. I think they helped me to a certain extent, but I also feel that one specific block caused my spread.

Sandra

I do agree how we all respond is different. I am on my 5th pain doctor and what I like about him is he gives options not just his road or the highway. I know with past people they do what they specialize in. Do you know when I hear the word tunneled epidural catheter 9 out of 10 times I can tell you it is at the Cleveland Clinic. Just like if you go to this one doc in Ca he does basically blocks only. They don't always look at the individual and that is not right. See for me I have not found the anestesolgists except my current wanting to work with meds. That is why I am alwyas amazed here at the amount of narcotic type of meds that people take because except methadone that was suggested and then ruled out and my vicodin/darvocet I have not been given that as a possibe. For me it took awhile and now I have had 2 bad experiences to get to the point where I wanted to try invasive and now I am back at the point where again I am not sure. This sucks but I know there is lower bottom but then there could also be a better. I think it is a personal choice and everyone is different. It may change for you as the course is. Hang in there and sorry for my novel

Calcitonin is used as typical first stage treatment for RSD in Belgium. It comes in the form of injections and the typical treatment is 1 injection every day for 3 months.

If the RSD has progressed beyond that and is persistent, then bisphosphonates are used. You typically have to consult a rheumatologist for that. There was a study published in 1998 about the use of bisphosphonates in bone cancer and recalcitrant RSD. Bisphosponates are meds also typically used for (post-menopausal) osteoporosis. Meds like Aredia (Pamidronate) (which I got), Fosamax, ...