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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi. I am new to the boards as well, this being my first post. I am dangerously close to 50 years of age. I have had RSD for the past 6.5 years and have an SCS implanted. Two years ago, they inserted the SCS via catheter. 18 months later the battery had to be replaced...this was last December. In January, they did a trial to surgically implant the SCS for better coverage as the RSD had spread full body. The perm. SCS was implanted in February and I've yet to be able to turn it on. It seems the final surgery in February triggered all sorts of allergic reactions, 67 to be exact. I am now allergic to most herbal products, all metals including gold, titanium, etc. They do not feel I have a reaction to the SCS. I had to call Medtronics to see if they had an allergy test kit. I did react to some, but was later told what I reacted to was not used in the SCS. Medtronics allergy test kit is a generic kit used for all of their products.

I've had to see a urologist that feels my bladder only holding 1/4 of what it should is a complication of the RSD, but my neurologist at the U of M does not feel RSD spreads. The anesthesiologist that works in the same pain clinic has assured me it does. I was hopeful to get off the Fentanyl patch with the increased coverage, but I was taken off due to a sudden allergic redaction to the adhesive. I am now on Palladone, a long lasting dilauded.

I've been on Clonidine to lower my blood pressure in hopes of increasing blood flow to the affected areas. All it did was make me pass out...lol. It was stopped shortly thereafter.

I have been having excess Hydrosis and my gyn tested for menopause. I have not had my menstrual cycle for 7 months. The Prolactin and Follicle Stimulating Hormone tests came back normal, even though the FSH test can vary from hour to hour. I do not like to blame everything on the RSD, but in the past two years, I now have an abnormal EKG, many allergies and have gained 80 lbs. I am on 6000 mg of Neurontin a day and was told that will cause weight gain. I am on Valium and Flexeril for the myocolonic jerking and Mirapex for the tremors.

I am in the process of continuing my education in psych., but am having more and more difficulty cognitively. I don't know if this is due to the pain, the meds, the RSD or a combination.

Anyway, the SCS worked for a short time when it was initially implanted. Apparently, after 18 lumbar sympathetic nerve blocks I have too much scar tissue and they were unable to insert the catheter high enough for sufficient coverage, hence the surgical implant.

I feel every one is different and we have to listen to our bodies. Who knows how our bodies react better than we do? I disagree with my neurologist on several issues, but we agree to disagree. In Minnesota, they will not treat RSD with morphine. After seeing 32 physicians, none would prescribe morphine. I've been through an MMPI that showed I was a good candidate for opiod therapy. I've been through acupressure, acupuncture, massage therapy, O.T., P.T., relaxation therapy, Reiki, herbal teas and supplements, bier blocks, lumbar sympathetic blocks, and others too many to list. In facilitating support groups, I've learned so much on the diversity from person to person in dealing with their RSD. I no longer believe in any elective invasive procedures for my body. It has only caused more problems, but that is just me. We have one man that has had RSD for almost 27 years and has had a successful sympathectomy, unbelievably. He swears by them.

Sorry for such a long post and if you got to this popint...thank you for your perseverance.

Bonnie





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