[RSD ME]

Hi. My name is Renee and I was diagnosed with RSD over two years ago after breaking my wrist after a fall on the ice. I was also recently diagnosed with Fibromyalgia a few months ago. I am in constant pain all over from both conditions believe the RSD is spreading to my left wrist and right leg and foot.

I see many doctors and take many medications to deal with the pain and the pyscological toll these conditions are taking on me.

When I was first diagnosed with RSD, I had eight nerve blocks in a two month period and six months of physical therapy.

They stopped helping after that time.

I also recently tried acupuncture several times, but the pain from the needles hurt too much and I feel that it aggravated my RSD, so I stopped it.

Lately, I am having more pain and am really scared of the constant pain and the RSD spreading. Does anyone have any advice on how to deal with constant pain and fear? I would really appreciate any advice you have.

Thanks.

[Allanira]

Welcome, sucks you have to be here for this monster of a disease. Try to stay calm. Stress causes flares. To relax go take a warm bath with epsom salt. Its good for you. I have tried it after having it suggested to me and it helps with inflammation and makesnyour skin pretty except mine looks dry and scaly. Don't look at the bad rsd pics that are out there. They would scare the pee out of my husband. Yes being in pain is scary. Everyone on here knows what you are going through. There are a lot of helpful people on here from all over. Don't use ice on anything and if they try say no. Use moist heat. Are you going to a Pain Management Dr? Also does your pm and pcm or pcp have you on a good med regime? I know its cliche but try to find something to keep your mind busy, also something funny. It does help some. If you try to keep positive and do the exercises they give you in pt then it helps some also. Try not to get down about not being able to do the things youmuse to. Depression will set in if you do. If you have a meltdown come on in. We all have them. Shoot I just had one the other day after not being on here in a while. We try to help. I don't know that much about fybromyalgia as I do CRPS. Slow deep breaths while you take it all in. I know both are neurological disorders. If you start to get a flare as winter comes on make sure you have soft clothes you can wear. It helps some with the sensitivity if you have any. Keep the area your rsd/crps is in warm.

[Sylmeister]

It sounds like you are on the same flight I am on. I slipped in water, rather than ice, but had done the ice trick as well. Used to live in Michigan. Anyway, I tore up my shoulder from the fall, required surgery can came out of anesthesia with RSD. It started in my right shoulder, arm, hand and upper right torso. In some resects, I was vey lucky, I was diagnosed at 4 weeks, by my PT. She was awesome and immediately started working on my arm, which was already "frozen" in just four weeks. Barely after two years in, I work up with a very different pain, in addition to the pains I had had for two years. I was old that RSD "opens the door" for other diseases and that I had fibromyalgia. RSD is the beast and Fibro, it's ugly sister.

Allenira has already given you a lot of good advice. For me, I was already on everything medication wise that was even considered to be useful for Fibromyalgia. I had pain meds, anti inflammatory, anti depressant, anticonvulsant, needed something for acid reflux at this point and because apparently I was controlling high BP, high Cholesterol and Diabetes with diet and exercise, until I became an RSD Zombie. (my pain was so bad I could not even hold a conversation for several years). I had a bucket full of chemicals, when before that I only had to deal with hypothyroid disease and I didn't even like taking that once a day little pill. It is vey distressing to feel like you have a pretty good life, enjoy your job, and for me, I had a great but relatively new marriage. This happens and it pretty much gets pulled out from under you.

I can tell you I fought back really hard. I tried really hard or a long time (once I was able) to get myself out of the house, even if it was for a coffee. I tried to fix us dinner if I was able to convince myself i was up for it. I pushed myself or tried to and only wound up in much worse shape, I was a sea hag to my husband and yelled at my dog, & my pain was worse. When I prioritized, making, I thought, my husband 1st, then me, what I found was that in order to be there for him, I had to be there or me first. I still got up and got dressed and have still never allowed myself to stay in bed, but once I got that far I did not push myself. If I truly felt up to emptying the dishwasher, then I did that, but didn't push myself to do anything else. When I did too much, then, my function the next day was lower and my pain, higher. I started then and still at 10 years in, never set my alarm, unless I have a medical appointment that I could not get scheduled in the afternoon. I wake up when my body tells me to get up. I stopped stressing about cleaning and doing things that I thought other people expected of me. In a way, I let the Monster be in charge, but by doing so, I am able to have a relationship with my husband. Not the one we had before, but an augmented one that still works... With the RSD and the Fibro. I learned how to negotiate with my pain and work around it. If there is something we want to do, I schedule doing NOTHING, a day or two before, so that I don't jeopardize our going out to dinner or what ever we have planned. And yes, socializing still has to be scheduled and negotiated with the RSD.

Just like Allenira said, do what you can to minimize the stress in your day, every day. You can live with this and once you begin to understand the diseases independently of each other, Understand how each restricts you and how you can work around it, Life actually becomes more manageable and I believe the pain becomes more manageable. My RSD had already begun to spread when the Fibro showed up that morning. I felt it getting out of bed and I didn't know what it was but it ticked me off. because honestly, didn't I have enough already. My RSD has spread to my entire body and I may look a bit like a sea hag most days... Ok, look a lot like a sea hag, a lot of days, but I don't act like one anymore.

One big suggestion as far as the Fibro goes, I saw a fibro specialist in Tucson, right after I was diagnosed by my rheumatologist. actually my 4th PT (we all have lots of helpers I am sure) referred me to him. One of the tests he had me take right away was called ELISA ACT. Each letter stands or something but its pronounced like ELIZA Act. Blood is drawn and sent to a special lab, where it is tested against up to 600 food, chemical, environmental agents, across 3 days. It is tested for inflammation. Everyone is affected by different things and it is in no way associated with items you may be allergic to. It is an Inflammation test. Back then, the only fat that was allowed in my kitchen for over15+ years was Olive Oil. Guess what was one of the top 3 food items that was causing inflammation in my body? Olives including Olive Oil, Blueberries and Peas including snow and sugar snaps were my food triggers. I promise you, I immediately cut them out of my life and I was able to get out of bed. I do have Fibro Flares, usually the weather, doing too much, and excess stress cause those flares, but most of the time... I know they are coming. i travel either a long car ride or air flight, and I know can count on a Fibro Flare. So, I prepare for that. I negotiate it and David and I know, the day after a travel day is a chill out day. For me, barometric pressure, doing too much, and excess stress make for a horrible tomorrow, but day to day Fibromyalgia does not kick my butt! That one test has made a HUGE difference in my life.

I can check my files tomorrow and give you more information on the lab that does this. Back in 2005 they were the only place to get it done. Not sure about it now. But I am sure you could look it up on line. Also back in 2005, if your insurance wouldn't cover the test, they still did it and charged the patient only $50. Which is amazing. I do not know if they still do anything like that or not. The lab is in the East, somewhere like Asheville or in VA. Can't remember exactly, but that isn't important.

Take it easy, soft hugs and when I get up and going tomorrow, I will go through my files and find that for you. I also read a self help book back then, I'll try to find the title. I'm not a touchy feelie person and I kind f hate that whole genera of publishing, but this author had some very good suggestions, the ELISA ACT test was one of them. I just got lucky and found a doctor who was clued in, because I probably would not have asked about it myself. I was way too defeated back then to ask. So taking charge is important too.
Soft hugs, Sylvia

[allentgamer]

Hi Renee, sorry to hear about the RSD

You found the right place for caring people that is fer sure! So far the advice is spot on, and I cant really add much. About the only thing that works for me is a combination of meds, and distracting my mind. But sometimes the pain gets so bad I say things I dont really mean.....the pain talking.

One thing ive learned is to not let the pain cause you to baby the RSD. If you dont keep using it, it will be harder and harder to use it when you need to. I hope everyones advice and true caring about whats going on with you helps a ton.

[RSD ME]

Hi Allen,

Thanks so much for your advice and support. It's nice to know there are others out there who understand what I am going through. I'm sorry you have this horrible disease too. Please let me know if you ever need to talk to get through the day because of this rotten disease. Take care.

Renee.

[RSD ME]

Hi Allanira,

Thanks so much for your advice on how to to cope with my RSD. I will try the epsom salts. I never knew that could help. I will also try to keep my stress level down, but it's hard. I was up all night last night with terrible nausea, stomach pain and acid reflux. I don't know if the medicine that my pain management doctor prescribes causes it, or if that's the rsd is spreading to my stomach. The medication helps with the pain and anxiety though. Do you have this problem and any thoughts on how to alleviate these symptoms? I would really appreciate your advice on this too. I already saw the rsd pics, before I spoke to you. I was horrified! I hope that doesn't happen, but my doctors tell me they don't know what course rsd will take. Nobody knows for sure. I don't look at them anymore though. Anyway, thanks again for your great advice. I'm sorry you have this awful disease too. If you ever need a shoulder to cry on, please remember that I am here for you too. Take care.

Renee.

[RSD ME]

Hi Sylmeister,

Thanks so much for your advice on dealing with RSD and Fibromyalgia. You seem to be experiencing alot of the same things I am. It's nice to talk to someone who is going through what I am going through, though I am sorry you have these horrible diseases. I will check on the ELIZA test. I didn't know about that. Thanks for telling me about it. I was up all last night with terrible pains and nausea in my stomach. I can't seem to eat certain foods anymore and maybe they are causing pain, acid reflux and inflammation in my body. I too have a wonderful husband and try to get out of bed everyday and be normal, but I can't seem to do much because of the constant pain, (plus the pills make me so tired). When I try to push myself to do more, I pay for it for several days thereafter. I have three furry friends that help give me a purpose and keep me going, but the active and joyful life I had before RSD and Fybromyalgia is long gone. Well, thanks again for your help. You made my day a lot brighter by being there for me. If you ever need help from me to get through the day, please let me know. Take care.

Renee.

[Brambledog]

Hi Renee and welcome

Sorry you're dealing with such a lot right now, I hope your pain levels ease up on you soon and you can catch a break from some of this...

I've got no experience of fibromyalgia at all, so I can't offer any advice different to anything above lol but in my admittedly not vast experience (2+ years lol), staying positive and as active as you can are the best defence against the dark arts of CRPS. A good laugh is frequently more effective than the so-called painkillers dished out sparingly by the docs!

We're all happy to help, and you should feel free to tell us all about any worries you have - were a friendly bunch, honest

Take care, and good luck with everything.

Bram.

[RSD ME]

Hi Bram.

Thanks for your advice too. I'll try to stay positive and exercise. And I do like comedies. I will see if there are any new ones starting this Fall. I appreciate your advice too and kindness. I'm having such a bad pain day today, but with all the support I've been given all ready on my first few days by all of you, it gives me strength to keep trying to get through the toughest pains caused by my with RSD and Fibro. As much as my family and doctors support me, it's not the same as having the support of kind and caring people who are going through exactly what I am going through.

I am sorry too that you are going through RSD too, and I am here if you or anyone else needs my shoulder to cry on. In the meantime, I am going to see what's funny on TV tonight. I hope you have a night that is as pain free as possible. Thanks again.

Renee.

[Allanira]

I hope your feeling a little better. If things get bad come on here and we will "listen". We really only want to make things as easy as we can for each other. Even if its just with an emote hug.