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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi all
Thank you for the welcome and hello. It is so nice to be in communication with others who live with RSD.

I agree that childbirth is less painful than RSD. Having had two difficult labor and deliveries, RSD has been worse, physically mentally and emotionally. What a strange comparison. One is a healthy life giving process and the other..... I don't know how to define this yet. I find it so bizarre when people try to get into a suffering competition. Maybe that is where the pain index is helpful.

Terry- I appreciate your honesty. Coping is better than not but I still hope for a cure. I have been fighting other kinds of pain for a long time but the RSD has hobbled me. I was (am?) a dancer and the RSD is in my foot and up my right leg.

I was diagnosed in the first 2-3 weeks and began the treatments- epidural treatments, spinal blocks, lidocaine patches, Neurontin, duragesic patches, demerol, yoga, vitamin treament, healers, PT, pilates, procaine, acupuncture, OMT, cranio-sacral massage, ketamine cream compound, lidocaine compound and antidepressants. I am looking into low dose ketamine treatments in AZ. Have you heard anything about these?

The epidurals and spinals took the pain down to a 8-9. The PT and yoga helped reduce it further. I have times of the day where the pain is about a 4 and other times its at an 8. I use the lidocaine compound, darvocet and vicodin, wellbutrin and exercise and vitamins now. Is there a treatment that has worked for others that I missed?

I am lucky in one way. I am married to a family practice doctor and becasue of his contacts I have worked with very caring, understanding doctors who have never once told me its all in my head. In fact a few of them looked so helpless and hopeless for me, it made me want to jump out their window.

I have been really struggling lately and keep thinking about another RSD sufferer who killed himself in my community about 2 years ago. I sincerely wonder if his wife and children are better off.

Maybe I am not coping very well yet.

Peace
Cathy
Just for today.......
Hi Sfangel,

I have tried everything I could possibly find out and some experimental stuff my husband and I reasoned out. I can share my experience with what treatments and the whys but I may be wrong on some of the "facts". This going top be a very long posting, sorry.

1. The epidural is done by an aneshtesiologist (sp) where they inject an anesthesia into the spinal area and numb the lower body. My understanding is that it is like restarting a computer that has locked up. They try to shut the nerves off for a while and see if they come back on line more "normal". WHen I said Spinal I meant Sympathetic Nerve block which I believe is similiar in theory to the epidural except one nerve grouping (the sympathtic) is targetted. (I hope I am close to coherent or even accurate) They both helped- the burning has never been as bad and the sensitivity to touch was lessesed greatly. I had 5 epidurals in the first month of diagnosis and 3 Sympathetic blocks in the first 3 months.

2. Lidocaine patches work well for me, not on their own but when I have to be alert and need to cut down on pain meds.

3.Neurontin made me crazy. It stopped the shooting pain but it seemed to have lowered inhibitions and O was a raging maniac.

4. The duragesic patches made me sick to my stomach though the pain volume was turned down low. I can't stand being nauseous.

5. PT hurt during and after but has helped keep the joint healthier. I continue a PT routine at home and do yoga but I have to take pain meds before and after. The rest of my body suffers from clenching, do you know what I mean? so I have to find some way to keep it stretched and able to relax. I also have back and neck injuries from a car accident and have to continously strengthen and stretch. Otherwise, between the RSD and the back I would never be able to get out of bed in the morning. Pain flares my RSD up so I have to keep a balance. I must keep the healthy parts of my body strong to carry the load for the damaged parts without causing a terrible flare up.

Pilates is similiar to yoga but the focus is on keeping proper alignment while doing exercises, not so much the exercises in themselves. I founf it helpful to work with someone one on one for 2 or 3 sessions so she could point out miniscule adjustments that made a huge difference in my overall health.

6. I think procaine is similiar but I don't know.

7. The acupuncture is probably what pushed my "injury" to RSD. Other docs have recommended it to me but no one is coming near my foot with a needle ever again.

8. Low dose ketamine treatments are pretty experimental. There is one doc in AZ that I know of that does it. I have been in contact with him, but might not be a candidate. They hook you up to IV ketamine (anesthesia- actually I think it was originally animal tranquilizers) for 3-7 days inpatient. It effects the sympathetic nervous system - I can send you a link to the site I researched it at.

I did have great, I mean great results with a cream compound that contained ketamine. Unfortunately, I couldn't deal with the side effects, but that isn't everyone's experience. There are a few pharmacies that make compounds for RSD, fibromyalgia and neuropathic pain.

That seems like a very long reply to your questions, but I hope it was helpful. Is there something you have tried that has or hasn't worked for you that I could look into?

Have a good night
Peace
Cathy
SFangel- how are you today? It is a rainy day here and that always makes moving a little slow.

To answer your questions and add some more-
The ketamine made me anxious, extremely anxious to the point where I had to start taking valium. Since I was trying to avoid more narcotics this was counterproductive. It also gave me weird dreams.

I am now using another cream compound with lidocaine in it, an antihistamine ( I think), a strong NSAID and something else. This is my fourth day using it, 4x a day and it does seem to be helping. Not like the ketamine compound, but the deep bone aching seems to be relieved somewhat.

I don't have "expertise" in acupuncture but this is my actual experience not the Reader's Digets version:

I had had 4 foot surgeries including a titanium big toe joint replacement and was in chronic pain, horrible pain. I kept dancing on it anyway. The first 2 surgeries made my foot problems worse and the next 2 were to try and fix the mess the first doctors made. I had been given multiple steroid injections in that foot as well as acupuncture and had gotten no relief it actually made it worse. I think that I had the beginnings of RSD in my big toe. (if that is possible)

I was getting prolotherapy (ligament and tendon strengthening injections) for my back and neck with great results, when I broke a different bone in the same bad foot. The doc decided to try and prolo the bone to see if it aided healing, it usually does. I agreed. It was the final insult to a foot that had been through the ringer. Within 2 hours of the treatment, the burning began.

Prolotherapy is not exactly acupuncture, but since the mechanism is similiar I refuse to have needles near my foot or anywhere below the waist. I had to go on crutches for a long period when I first got the RSD and tore my shoulder again. I have since has prolothrapy on my back and neck again.(120 injections in July under anasthesia) but after reading some of the forums, I'm not sure that was such a good idea. It helped but it sounds like it was risky. I really don't want full body RSD.

I seem so long winded compared to the other posts. This is really the first time anyone other than my husband and docs have been the least bit interested in what I have been doing. Maybe I need to ramble?

You can do a search for low does ketamine treatments and I'm sure you will find the info.

Just for today......
Peace
Cathy
SFangel
What does that stand for by the way? I see a doctor for prolotherapy in Indiana. There are numerous sites re: prolo and I think a few docs in your area are on line. Getprolo.com has a lot of info. Though I just read last night a Pain clinic that says it can treat RSD with prolotherapy. My husband and I gasped!

Am I allowed to tell you the name of the phamacy that filled the compound cream prescription? I don't know the rules of the forum. The same pharmacy filled the ketamine as well as the lidocaine compound. My doc in Indiana had received an article regarding a case study where the woman was able to cut down to 1 dose a day with the ketamine cream and it really alleviated her pain. Ask you PM doc if he will prescribe it or if he has heard about it. If I can I will email you the name of the pharmacy.

That must be so hard with a baby. How old is the baby now? Crutches are such a nuisance and I found i really needed to stretch when I was on them. I hope you are having a good day today.





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