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my last few months of burning in hell

Posted by rekha on 4/23/04 at 19:33 (149444)

In January, I was pregnant for the first time in 10 years, few days after finding out, broke into new pair of orthotics for pregnancy, worrying about foot problems coming back. after two days felt some tingling, burning pain in front of foot, podiatrist suggested I ice the area, cuz he couldnt give me a cortizone shot during pregnancy.

I vigorously iced the area and burning started to increase, I kept on icing icing icingg.....burning started going up the leg, the more the burning spread, the more I iced. I finally stopped after I felt burning in my other foot and hands..the burning fire rapidly started to spread up my legs and arms...couldnt figure out what was happening, my family thought I was over reacting...'it's pregnancy symptoms' My psychiatrist uncle told me I was a hypochonriac. My hmo couldnt figure out what was wronng.....I couldnt sleep at night at all...My whole body felt like I had been set on fire....I couldnt believe it....I couldnt take any med's...finally went outside my hmo to a pain specialist and she dx's with RSD. apparently ice causes rsd to spread. I was in so much pain that I at one point became suicidal. It is like being doused with gasoline and set on fire.

I have full-body RSD and am having blocks, lidocaine infusions, and am on 22 med's per day. I lost my child in march, and doctor says I shouldnt ever think of becoming pg with RSD. so that dream is gone, and now I will live a full life with full body rsd and chronic pain. I am only 34.

It took a while for me to accept this and other things, but now I have accepted my life.

To top it off, my heel pain returned with a vengeance. in both feet.

To the dr's: what treatments are ok for heel pain for someone with RSD.

Re: my last few months of burning in hell

Dr. Z on 4/23/04 at 22:32 (149453)

I am reading this in total shock. I am so sorry for your pain rehka.
The standard treatments can be used. Local posterior tibial blocks could help. You probaby are taking all the meds that are typical for RSD. MS Contin is the main pain medication for RSD. You are under the care of a pain specialist.
My heart goes out to you. What did they say set off the RSD?

Re: my last few months of burning in hell

rekha on 4/23/04 at 23:39 (149454)

thanks for your comforting thoughs. Just reading your post made me cry, which I try not to do since it increases my pain, but I sometimes can't hold it in.

Is eswt totally is eswt out of the question with rsd? what about surgery?

I dont know where my life will take me from here, I am taking it one step at a time. there were a few weeks when I hated everyone and everything, and was mad at the world, but now I have accepted the fact.

I am seeing a pain specialist. Dr's think I might have had a neuritis of some sort in the foot that coupled with pregnancy hormones and ice just turned into a vigorous RSD.

They say I am one of the fastest spreads they have ever seen, just a very unlucky person.

Re: my last few months of burning in hell

dr ben pearl on 4/26/04 at 18:55 (149600)

neither eswt or heel spur surgery is generally advocated for rsd.
pain management is the traditional treatment.
good luck,

Re: my last few months of burning in hell

Carol O. on 5/07/04 at 02:00 (150171)

My dear hurting soul...I am a nurse and work with CRPS/RSD patients a lot. I felt your heart pain when I read your message while looking for 'the magic cure' for a patient of mine, a 30 year old woman with 2 kids that also has full-body RSD. I get frustrated to know that there is so little that I can do to help ease her pain, or yours. What I can say...and I believe it with my whole heart...is that I do believe there will be a 'cure' in our lifetime. Many experts are very close to finding a way to block this horrible fluke in the nervous system that can wreak havoc on your pain signal. So, hang in there. You must first learn everything you possibly can about your disease process, knowledge is power. Get in a support group...either on-line or in person. Talk with others and see what has worked with them and then try it on yourself. Sadly, once you start to hear other stories you'll be glad you're not them! Some things that I have heard from sites that might help....warm, very warm, foot soaks in epsom salt. You can try capsaicin cream. (Over the counter 'hot' creams.) My little sweetheart carries those warm hand things you can put in your pockets when you go camping, skiing, etc., to keep her hands warm. The warmer her hands (or your feet) the better she feels. Above all, try to keep your sense of humor...you are not alone and many, many people will be there to help you along your way as you deal with your illness. Take care...if they'll give you my email address I'd be more than happy to share what little I know. The real 'pros' in this business are the patients! Take care, Carol