Mayo already has my info stretching back to '99. If I resubmit, how can I just give them a 2 year history? Won't they know? If they destroy/throw out the first medical reports, that's good. If not, won't I look like a nutjob sending in records for the past 2 years? Not that I really care if they think I'm ditzed out.

I just looked up RSD and it looks like pain, pain, pain all the time. How are you coping? Maybe Mayo has more state of the art answers for you. I hope they do. Keep us posted.

Daniella, I mostly hate the pace of NYC, especially on Fridays when the entire city is competing for cabs. Because of that, I try to schedule my appt's for non-rush hours. My once seedy upper west side nabe (moved here in 1966) is now entirely Disneyfied. We have Grey Line double decker buses cruising residential streets w/ tourists gaping at the "natives," and filing into Zabar's for bagels & lox. It's now so fancy here we don't have any shoemakers or barbershops or Mom & Pop stores left. They've been priced out. Boston and LA are looking better & better.

If docs/you think some of your pain is myofascial, there are a lot of bodyworkers in NY who do work. When I entered into the "healing" phase of dealing with my pn, I found a PT who does myofascial release, and her work, to me, accounted for a large part of my improvement---Besides working out the trigger points in a way that lasted, I think it relieved pressure on nerves, and pressure on the blood supply to nerves, so that they could utilize the oxygen and nutrients in the blood to heal and grow. Currently I see a feldenkrais worker, who has done amazing things for my back pain. Along the road I've gotten help of varying degrees from acupuncturists (for muscle pain), yoga, (again, I think it increased the blood supply). I've tried out craniosacral therapy (awful name for something that is a very gentle bodywork). I find that NY has so many alternative healthworkers that it's possible to discover things that help here that others aren't as fortunate to have available.

For you, I'd suggest the myofascial release as a start. If this started with the chemotherapy, that might really help the nerves get a chance to heal.

I know you're focussed on mayo, and getting clearer medical answers, so these ideas may not meet you where you are now, but file them away---there may come a time.

And oh, I agree with Gramps--keep things simple and current for Mayo.

I second the myofascial release. I go every three weeks if I can, but I'm at maintenance level now. When I first discovered I had chronic myofascial pain in 2002, I went more frequently because I had knots in my shoulder and hips the size of quarters.

Even if you don't have trigger points, I recommend therapeutic massage because it works toxins out of the muscles. And you had your share of toxins with the chemo. I figure every little bit of pain you can lessen will be helpful.

fanfaire

release-therapies. Some really work, many do not, depends on the circumstances.
One MAIN consideration and a primary one in so recommending such therapies is the particular medical coverage a person may have. It's like advocating chiropractic when it's not covered. Some PT insurance approved centers do provide such resouce therapies...but I have to say it's pretty hit-or miss if one is not in a major metro town. I would probably have to commute[drive] or walk a heap to a DC teaching hospital....to get any 'plan' approved feldenkrais, Alexander, myofascial release, accupressure or alternatives. It while a good idea, isn't on the 'menu', for me, and I suspect others?
Do you have any ideas how one who has physical limitations [not able to drive or walk far] access key resources for access to such resources? Particularly those on disability? Maybe your therapists can suggest resources? Many thanks - Many here could truly benefit - j

Antonia; have you tried Beth Israel? It's in your backyard & they have an excellent pain management reputation. Of course, it's not the place for diagnostics. If you apply for a new appt at Mayo, make no reference to any prior communication or reference #, if you were given one. Up until a few weeks ago, I was taking methadone & dilaudid for my pain. Now they don't help. I'm currently undergoing a cocktail of anticonvulsant, antidepressant, anti-anxiety, antibiotic & muscle relaxer meds. So far, little relief but some haven't had time to work yet. Believe it or not, nsaids are recommended over opiates, possibly for their anti-inflammatory properties.
Sue: Thanks for the compliment but especially the prayers.
I pray everyone has a geat weekend.
Gramps

Liza Jane,
Thanks for all the good suggestions. I searched for Feldenkrais and found a center on the w/s which I’ll contact after the holiday. Can you pm me with the name of the myofascial release therapist who helped you?

I had an acupuncture consult at Sloan and the doc was pessimistic about the outcome, given the long duration of the symptoms. He said I’d know if it was working after 6 treatments and although I said I’d try it, I changed my mind. His pessimism turned me off. Maybe I just need to find someone who may not guarantee results but at least doesn’t offer gloom and doom.

Dahlek,
I have Medicare so I am pretty much free to go to almost any kind of doc (but no acupuncture coverage for some reason). There’s unlimited PT if done in an outpatient hospital setting. I’d have to pay out-of-pocket for the non M.D. therapies you mentioned, which sound worth pursuing.

I use cabs to get around. In a lot of ways, being disabled in Manhattan is not as inconvenient as having to drive myself or asking others to drive me. There’s a disability van service but it means often waiting 30-40 minutes or sometimes they don’t show at all. I use it when I’m pressed for $$$. Doesn’t DC have such a service? I believe it’s a mandate of the ADA.

Gramps,
I feel so bad that all the meds you take are doing so little to help you. Let’s pray that Mayo comes up with some effective pain relief. I’m going to try the approach you suggest & behave as though I never, ever applied. I just hope they don’t have my SS# in their computer!! Beth Israel is just across town and I never think of it, mostly because all my medical care has been @ Sloan. But so far Sloan (except for cancer) has come up short in post-treatment therapies.

fanfaire,
I will definitely try the myofascial release you recommend. If it weren't for this forum, I'd never know such therapy existed. Thank you for sharing your experience with it.

Have a great weekend! Thanks again to everyone for their thoughts and suggestions.

Gramps, Did you get the permenant scs? I'm just asking cause that is what they want for me. Were still not sure if my issue is rsd. All the docs think it is similar to rsd but I don't have all the symptoms except the horrible pain. If though its fibro or myofacial they say it won't work the scs. I'm thinking i have a combo of stuff. I was wondering for you too if the reason the scs doesn't work for you and the meds is if you have something that those things don't work for too?
Antonina I was thinking of doing acupuncture but then the doc I may see was saying it wouldn't work for me. I know my step sister swears by it. I don't think for me where my extreme pain is it would help but the other lesser aches it may help. I'm sorry and I know your not sure about your dx but what is the possible or what are they treating you for?
Boston is very cold. I think. La is expensive but the weather is very nice. I know when I was thinking of moving and choosing the place there was no exact perfect but I'm happy with my choice though it is so expensive. Oh my like unreal.
Many hugs to all

Daniella, no, I failed the trial for the SCS. It increased my pain. I had a pump which kept having catheter problems & I had it removed last year. My current problems may be related to all the procedures I have had done to my spine & all the meds placed in it. Something is causing my nerves to continuously fire & cause severe burning pain & other sensations, (Central Pain Syndrome). If the cause can't be treated, the condition can't. CPS not only causes nerve pain & related sensations but also severe muscle pain, cramps & spasms, as well as pain or discomfort in several organs. Some of the causes are spinal injury or trauma, neuroinflammation, neurotoxicity, ALS, MS, etc. The odds of the SCS working for you or anyone else are 50/50. Good luck to you. Gramps

Thanks. I'm so sorry. I'm really trying to wait and start smaller. I'm with you on a dx that is every where. Its like random guess for pain control byt the docs. What is making me nervous and the last doc I saw said some of these things and even like meds can make it worse. I never thought that I just thought it wouldn't work which is bad enough but more pain? Is this true with meds too or just procedures? Now I know you said you have rsd and they were thinking mine was similar but don't have all the symptoms. Anyhow did you have the nerve shots in the back? I had read in 95 percent of the cases it helps to dx that and then to see if the scs would work? Now I had two shots in the area but didn't work. The last pain doc I asked about the shot in the back and he said for me it wouldn't work and I needed the scs for long term. Is there anything with the shot that can make it worse the pain or have issues? Sorry to barge on yout thread antonina. Hope your feeling better and you too gramps.

Daniella; By shots, are you talking about epidurals? Or are you referring to nerve blocks? Epidurals usually are given in 3's if the 1st 2 don't work. Nerve blocks can help w/ an RSD dx. You can have many conditions w/o having all the signs. Doctors tell me that I don't have RSD because I don't have discoloration or edema. I went through that stage years ago & I had neither at the beginning. Now I have muscle wasting & bone density problems. Many docs still aren't familiar w/ RSD, the different symptoms, the different symptoms of each stage or even the different stages. I would be leary of the doctor who is recommending the SCS w/o a definite dx. Also, there's only a 50/50 chance that the SCS will work for you & even then it may not provide total relief. I think you should go to a neurologist & seek a dx before you let any pain doc implant anything in your spine. Epidural & nerve block meds usually don't cause problems unless you have an allergic reaction. Take care.
Gramps