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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 06-09-2010, 11:03 AM   #1
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Susanb1962 HB User
Fibro and RSD

HI,
I have been told that I have fibro about 15 years. I do believe I have it. About a year ago I had foot surgery where a surgeon hit one of my nerves in my foot/ankle. I have a neuroma in the nerve where he went in. 7mm! I have now been told that I have RSD as well. It's hard for me to understand it all. I don't know if I have RSD because of the neuroma on the nerve or if I just got RSD just because? THe pain in my foot has gone up my leg into my thigh. At Christmas time last year I did have the Spinal cord stimulator place to help with the pain. The trail went so good, but when they placed the permanent one in "I think" I had too much scar tissue where they wanted to place it. Long story short they had to go back in 7 weeks later and try again. That surgery was 2 1/2 hours long, but it's working so much better this time around.
One of my questions is how many out there have both Fibro and RSD? also, are most of you out there suffering mostly with RDS in your foot?? I"m not one who likes to take pain meds, but somedays it's just too much to deal with. I'm also allergic or sensitive to all pain meds. So if I take one I have to take a allergy medication with it. Anything, out there really help anyone with both.
Thanks for any help someone can send my way!
Susan

Last edited by Susanb1962; 06-09-2010 at 11:07 AM. Reason: I wanted to add something

 
Old 06-11-2010, 11:34 PM   #2
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RoseinSanDiego HB User
Re: Fibro and RSD

Hello,
I have RSD in both feet, but I was diagnosed in 2007 because I had a surgery on the bottom of my left foot which left me with RSD. UCLA diagnosed me and then since I live in San Diego County, I was sent to an RSD specialist and been seeing him ever since. I take 675 mg of Lyrica everyday, and I also take Savella (a new medication that helps fibro and RSD patients). I take both of those meds everyday and I have put weight on but my attitude is that I'd rather be heavy and be able to continue to walk on my own and be able to continue working my 15 hour contract in the classroom. I'm not happy that I'm very heavy, but for now, that's how it is. I wasn't overweight at all before this RSD diagnosis.
You will find tons and tons of very kind and very supportive folks on this site. There's lots of information too, but just be careful because RSDr's don't respond the same to drugs or to treatments. My doc told me that we should avoid surgeries unless absolutely necessary and I believe him. I'm hopeful you have a doctor that is informed and educated about RSD.
Welcome to this site, and write back if you'd like. I was a walker and I walked so much that I ruptured my plantar plate so that's why I had surgery, and it wasn't done properly.
Deb

 
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Old 06-12-2010, 08:14 AM   #3
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harmony85 HB User
Re: Fibro and RSD

Susan,

Welcome to the boards!
I'm sorry to hear about having rsd on top of fibro. If it's not one thing it's another. I can see how you would get rsd from the foot surgery,nerves can be very funny and sensitive. And with your nervous system already having issues because of the fibro I could see how it would be easier so to speak to get rsd after different surgeries.
I have read a few studies of people with fibro and rsd,I myself don't have both but have read that they can be similar in the way both diseases attack the body. I hope that you are able to get more relief without having to take meds that you have allergies to. I don't know any strong meds that you can take if you have a wide variety of allergies to opiates.I would go over different meds with your doctor. A pain management doctor can be best,some one who is used to chronic pain and can give you quicker advice.
I do have rsd in my foot,many other places too. It can be very painful to walk and just move around. My heart goes out to you. The best thing I can say to do that doesn't deal with meds is using softer things that won't irritate the rsd.
Are you very sensitive to different fabrics and pressure on your foot? If so get some really stable shoes. Something soft. If you can handle wearing sneakers you may want to think of using really good running shoes. They usually have more support and cushion so that it's softer when stepping down.
Also micro fleece,micro fleece,micro fleece. I have read many studies and have met many people that say that,that fabric is the best. You can get all sorts of socks and pants that make it easier to have fabric on your skin. I know a good deal for me when it comes to easing my pain is getting away from different "triggers" that rub and cause extra pain. Even my foot just being cold can make the pain ten times worse. I've learned that a heating pad is my friend and can sometimes make or break my day.
I hope that you are able to find some of this helpful. Please don't hesitate to ask any questions.There are so many great people on the boards here and are all very supportive when you need advice or just need to vent because you are sick of being in pain.
Take care and stay warm,
Deanne

 
Old 06-14-2010, 08:06 AM   #4
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Susanb1962 HB User
Re: Fibro and RSD

HI,
Thanks for writing back. I'm just going through a really bad time. I don't want to talk too much with people on an everyday bases! I am giving up a ministry at my church that I have run for a year. All through my surgeries I never gave up, but now it seems that I just don't have the energy. Or I should say I want to save my energy for my 11 year old and family.
My shoulders and headaches are so bad right now. It's hard to get through the day. I can't wear gym shoes. Pretty much it's hard to wear any closed shoe do to the nerve pain on the top of my foot. I don't let anyone touch my foot. It's just hard to understand my nerve pain due to the neuroma and RDS? I will continue to read posts on this site. I just need people who understand. Because I look normal, one must be NORMAL. LOL
Thanks again for writing,
Susan

 
Old 06-14-2010, 08:41 AM   #5
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Sandy325 HB User
Re: Fibro and RSD

There is also some really good info on the RSDSA website. When I was first diagnosed with RSD I joined the RSDSA and they sent me a great packet of materials that I shared with my husband. It helped him to understand what I was going through. Check out their research articles. I have had a tremendous response lately to ketamine infusions. The earlier in your diagnosis you can get them, the better. It was only after I was treated with meds, 8 stellate ganglion blocks, 1 lumbar block and 7 lidocaine infusions did I finally get to a spcialist several hundred miles away and start the ketamine.

The best of luck to you, Sandy

 
Old 06-17-2010, 09:11 AM   #6
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harmony85 HB User
Re: Fibro and RSD

Susan,

No problem on replying. We are all here to help and we do understand what you are going through. It isn't easy but you can live a happy life,you just have to make changes. I'm sure you are already aware of the different things that you have to give up or change.
Have you tried any diabetic shoes? I've heard that some people get results from those because they have to be more comfortable and wider for swelling. In some cases people who have diabetic issues also can have nerve issues,most commonly in their legs and feet. There are also different socks that are softer to wear and easier when dealing with it on your skin.
Are your doctors trying or going to try any nerve medications? Some people can and do get good results from these like lyrica and cymbalta.
I hope that you are able to get some comfort and hopefully get that comfort with out having to take a hand full of medications.
By all means come on as much as you would like. If you need any type of help,rather it be asking advice on the different meds and therapy that is out there or if you just need to talk to some one who understands. A lot of the time people can get some types of depression not only because of the constant pain but also the life changes that come with it. Just remember that it's not your fault and you can't help not being able to be super woman. It's ok.
Take care and stay warm,
Deanne

 
Old 08-12-2010, 02:40 PM   #7
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Newbright14 HB User
Re: Fibro and RSD

I have fibro and then developed RSD in foot after ankle surgery

I am 4 months post surgery, had 2 nerve blocks and about 8 weeks of pt

Foot doing better, but fibro is WORSE!

 
Old 08-14-2010, 11:03 AM   #8
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gohabs HB User
Re: Fibro and RSD

i have rsd in my hands and arms up to my elbows as the result of a c spine fusion. i've tried every med out there and the side effects have really turned me off. i take hydro's and cloipam (misspelled) everyday and its ok, better then all the side effects. i have had rsd for 5 yrs now. it sucks!!!!!!!!!! good luck to u all

 
Old 09-02-2010, 01:14 AM   #9
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kerrymcbizzle HB User
Re: Fibro and RSD

Hey Sandy,
I am new to the RSD thing. I'd like to think I am handling it ok, but I am really having a hard time with it all. I was in 2 bad car accidents tboned w/in 4 months of eachother. One I was a passenger and the other car hit right where I was sitting going upwards of 60mph, that was the 2nd accident. 1st one seemed to be a shoulder injury, 2nd one my neck was hurting horribly after. Seen many docs in all specialities. None could really come to a cohesive conclusion except I have nerve damage in both arms but right is/was carpal tunnel& is better. As well left shoulder has a labral tear which apparently surgery will only make worse and another tear in my rotator cuff. Have had 3 stellate ganglion blocks. 2/3 helped a bit. But the pain returned w/in wks. My dr thinks I have thoracic outlet as well as rsd. But is low on ideas as far as how to treat. I have seen neurologists, pain management, various general, vascular, neuro, &shoulder surgeons. I am lucky if I have 30 mins w/o pain in a week. I have been out of work for 8 months. When I was working I was incredibly doped up on pain meds but still the pain was intolerable and my boss advised I take a leave. It has only gotten worse. I cannot raise my arm above my shoulder, cannot touch anything cold or my hand feels frozen from the inside and burns for hours later, my physical therapists are clueless on what to do to help, I can't go out anymore. 2 hrs off bedrest&I'm in so much pain I'm utterly exhausted. Pain goes from shoulder down to hand. Have some strange feelings in left leg and now am having intolerance to cold in right hand.

My concern is that I have had just as many drs say I don't have it as say that I do. But I do not have the symptoms on my hands like the scaly skin or change of nails;however because the blocks worked that is why my dr believes I have rsd. I am going to see TOS specialist @ ucla in a few wks, my dr also wants to send me to shoulder spec. In san diego. I just can't figure out if I have if, what I can do, any recommendations on drs, meds, what I can expect? I thought I was fixed when I had some relief, told my boss I can go back to work once I strengthen my arm back up, but after 4 days of general activity, driving, church, keeping busy w/little physical exertion the pain came back 200% and hasn't relieved one bit. As well, when I sit, after 10 mins my neck begins to swell and gets very painful and sends pain down the arm. Have had 2 c-spine mris that didn't find anything, but I literally cannot sit more than 10 mins w/o the pain coming on full force.

Sorry this is sooo long. Looking for any advice for any of it. If anyone has had similar symptoms. I used to be super active in sports and the fact that I am on bedrest, let alone cannot work is making me miserable on top of the pain. I just need answers.

Thanks to anyone who can relate or has any type of advice!!!

My heart goes out to all of you suffering in pain.

Take care!

Kerrt



Quote:
Originally Posted by Sandy325 View Post
There is also some really good info on the RSDSA website. When I was first diagnosed with RSD I joined the RSDSA and they sent me a great packet of materials that I shared with my husband. It helped him to understand what I was going through. Check out their research articles. I have had a tremendous response lately to ketamine infusions. The earlier in your diagnosis you can get them, the better. It was only after I was treated with meds, 8 stellate ganglion blocks, 1 lumbar block and 7 lidocaine infusions did I finally get to a spcialist several hundred miles away and start the ketamine.

The best of luck to you, Sandy

 
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