RSD/CRPS Lived with it 14 years
 

I have been on here only a few times. I have a question for anyone. Is anyone being given any medications for your pain and the coldness? They can make your problems so much less and you can live a somewhat normal life, you still have pain, but it is bare able and you can walk. I have gone through stages with my illness. I take medications and it helps, are any of you taking anything? Also mine spread to the other side it began in a foot which was operated on. I would truely appreciate anyone speaking on the matter.

It frightens me to think I could be taken off the medications that help me so much. My right foot when I developed it was Black in color it was so bad, and muscle waisted down 1-1/2 inch smaller, plus I was 90 pounds and dying, I was throwing up daily. I had the Spinal cord implanted. Then I had it removed. It would not stay attacked to the spine. I do use a Tens unit. It has effected my immune system. I say away from others because I catch everything.
Please someone tell me if you are being helped with the medications, opiates is what helps me so much, I had many injections in my leg down to the foot before it warmed up enough I could touch it, I could not touch it or nothing.
Thanks, and Blessings to all. Thanks

Hello and welcome back. You are certainly not the only person suffering with this disease that relies on the daily relief of medications. I was lucky to be diagnosed early after onset and take my prescriptions faithfully. Partly for the pain relief they provide and partly out of fear that if I don't, the disease will spread.

Last month was a better month than the few before. I felt it was the right thing to do to ask my doctor if that means I should cut down right away. He was happy to hear but insisted I stay on them a bit longer to ensure I am "stable". So I am continuing to take them as prescribed.

Don't feel guilty for taking something that helps you. You have to stay strong and be your own advocate. It soungs like you've suffered more than many and therefore many won't understand why you take your meds, why they make you feel better, and why they bring you warmth.

Best wishes and prayers.

With this you do whats neccessary to survive another day and no one who has it would criticise you.

Hi Brenda,

I understand what you are saying. I could not imagine my pain if my medications were taken away. Mine is also in my feet and I have had many many sympathetic blocks. I also had a stimulator trial but didn't have more then 50 percent improvement so we did not go forward to implant.

With the winter fast approaching we will all be looking at ways to decrease the pain and keep flares at minimum.

Alt1268 I could not imagine my pain if my medications were taken away.
I can I have a neuro-receptor disorder so that after one dose of any medication I get instant immunity so I fight this on willpower and cigarettes alone.

Bless your heart. I just can't imagine, how you must feel.

Medication for Cold CRPS
 

Hi Brenda

I am in the 5% who have the 'cold' type of CRPS. I've had CRPS for over 5 years now which affects both my legs, hands, arms, shoulders and to some extent my back.

You asked about medication for the coldness. In addition to a number of other drugs which I am prescribed for my pain etc, I have had a good result with a drug specifically prescribed for the coldness. It is a drug called alfuzosin and here in the UK it's commercial name is Xatral. It is a drug which is licensed for treating men who have difficulty urinating as a consequence of benign prostate enlargement. However, it has alpha-blocking properties and acts as a vasodilator.

It has made a real difference to the deep, aching cold pain as well as the blood flow thus slightly raising my limb temperature. I find that I have no side effects at all from this drug. I take 5mg in the morning and 5mg at night.

Hope that is useful.

According to the Dutch Guidelines if you are one of the cold ones you should be treated with Calcium Channel Blockers.