RSD and Fibromyalgia Survivor
 

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.

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.:hug:

Hi Renee
 

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, :wink: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

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. :hug:

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.

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.

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.

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 :winky: 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 :D

Take care, and good luck with everything.

Bram.

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.

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.

Thanks for caring so much. Even with all the pain I have it helps to know I have friends like you who understand and care. I feel a little better today then yesterday. I still need to go to dr and find out why my stomach is hurting so much now. I hope the rsd isn't spreading to my stomach, but I don't know.

The pain two nights ago was so unbearable and kept me up all night. But I slept better last night and am just going to stay in bed for most of the day today and rest. Drinking milk seems to help too. And I am sending my husband out for EPSOM salts today. Thanks again for thinking of me. I hope you are doing okay. I'm here anytime you need to talk too. And yes, hugs do help! Soft hugs to you too.

Have you tried using liquid anti acids like maalox, or mylanta? They coat the stomach but definitely get into the dr to have it checked. Some of your meds might be causing you to build up acids in the stomach and left unchecked can cause ulcers. Keep the positive attitude. :hug:

Hi Renee
 

So sorry you had such a bad night. I wonder... I belonged to a support group in Tucson, a lot of years ago, and have read a lot, off and on on both RSDSA.org and RSDHope and haven't really heard many people talk about nausea much. I have literally had to go to the ER off and on because of nausea and violent vomiting. It starts with a pain flare and then nausea, I try to control with breathing and relaxation techniques. The nausea if so bad it's like the worst food poisoning, where you don't want to move an inch for fear of losing control, trying not to start the vomiting, but also don't want to move because the pain is that bad. For me it almost always happens at night too. I lot of the time I go to bed feeling ok, but wake up with pain and nausea. Geesh, I hope that is not the same experience you have. Because then after violent vomiting there is always dry heaves, for me, and then the pain I would be in for days because of ripping up all my upper torso and back muscles. The would last for days at the very least and it was difficult to breath for days afterward. Of course with the Fibromyalgia, with regular flare ups you can literally feel every single muscle, every single rib. I hope yours is not like that. It's one of those events that I don't even want my husband to have to hear, but there is no way around it. And there have been a couple of those that he had to take me to the ER so that I could even begin to get relief from the violent pain and vomiting. I hate for him to have to see some of what I go through, because he internalizes so much and because he really can't do anything to give me any comfort, he beats him up inside. I know how awful I feel when he gets the flu or something where he is in pain. I can't imagine being the person next to any RSD sufferer and being unable to do much for the pain part. No one else in my family can even tolerate asking how Im doing. That makes me angry, because they don't know 1/100th of what my husband deals with. A lot of friends hear the after the fact details of some things and they have sympathy, but my family, they don't even ask how I am doing, and over 10+ years never have. I'd be willing to bet my brothers have never even gone to the RSDSA.org web site. Ignorance is bliss.

I have that test info for you. It was Feb of 2006 that I had it done. They sent me this 81/2 x 11 spiral bound book with all the results and for things like chemicals, where during the course of a normal day you might cross paths with that chemical. For instance, cadmium... I used to be an artist but other than that I would never have known where to avoid exposure to cadmium. They give you a history of the chemical, sources of exposure in general and also specific to general exposure as well. Meaning that if you are not exposed to production or use in a work or close location to where cadmium is used, where else might you cross paths with it. Cadmium is a significant by product of second hand smoke. That is something that gives me an actual point of contact that I can avoid.

The actual title on the book says,
LRA by ELISA/ACT TEST RESULTS

ELISA/ACT Biotechnologies LLC
CLIA #49 D0668056
14 Pidgeon Hill drive, Suite 300
Sterling, VA 20165
Phone: 800-553-5472

I woud just suggest calling them first and telling them you have Fibormyalgia and know of someone who was helped by their testing. See if you can't get some practical information over the phone on cost, where you can get it done locally or how your doctor can get in touch with them. Also ask if they have any provisions if your insurance doesn't cover the test!!! Also, just an FYI, when I took it there were 3 levels of testing you could have done. a small portion of the items they looked for as inflammation agents, a mid range quantity and the full battery. I got the full battery because the insurance I had at the time did cover the test in full, I think it was about 600 items.

I had a friend in Falls Church VA, who's young adult daughter was recently diagnosed with Rheumatoid Arthritis, they had her get tested and it made a big difference for her. Being able to avoid ingesting or exposing yourself to things that affect your life every day is a huge weapon to have. I hope you are able to get the test done. As I said I was eating olive oil in almost everything I cooked, and I used olive oil as a moisturizer. When I got my test results I had been doing a food cleanse and was making protein shakes with blueberries for several days, to see if I could find out what were my triggers in the kitchen. Two of the three food items for me, I was slamming into my body every day. So getting this test done can be a huge eye opener. I switched back to coconut oil for a moisturizer and now cook with coconut oil, walnut, and avocado mostly. Before that it was all olive, eve things like a coffee cake, I would bake with olive oil. Now we just keep in on the counter for my husband to put on top of things I cook. It's really annoying that the olive and blueberry thing cut out these great sources of vitamins and health for me but the alternative... I'll share one with you. I subscribe to a site called FOOD52. everyone in my family is a foodie, we all seriously cook, and I have immediate family members that are chefs and pastry chefs. So when I can , though I can't cook a full meal, like I used to and do go any where near attempting a holiday meal because I can't keep track of measurements and timing and I drop things and screw up a lot and that's a big slap in the face. I know I can't pull it off and have had enough failures to know I shouldn't put myself in that position any more, but I do cook one to two things at a time. So I am reading about this chef and his slow cooked vegetables and how these website folks have altered his primary recipes to incorporate a lot of other ingredients, blah, blah, blah. It's a recipe for broccoli cooked in olive oil for like an hour. Sounds very insane to me, to even think of cooking broccoli for an hour and it sounds like a risk to do so with olive oil. The ELIZA/ACT and my doctor said that IF you do consume those three items to do so very seldom and in small quantities. So for 10 years the only olive oil I have consumed it what ever small amounts I have gotten from a restaurant meal. So I have a bunch of Baby bok choy and I follow this simple recipe. The bok choy is amazing and sweet and lovely and I literally can not get out of bed the next day and the day after that I have in massive Fibro pain again and I have a Pain Specialist appointment and have to have my husband miss work to take me. So even after 10 years... I do not question the validity or necessity of my having to have this test. I can not even imagine the condition my life would be had I never found out that Olives and Olive oil were contributing to the Fibromyalgia so very much. IF there is any way you can get it done, I would absolutely do so. There are a lot of books out there who tell you foods to avoid and how you can use food to treat, bring remission, etc. I will go so far as to agree that there are foods that in general, cause an inflammatory response to a broad public. Guess what, Olive is not on that list.

Also, here is a web site that I trust for general health and food so to.
http://www.mercola.com
You can find a lot of good GENERAL information about how to eat to lessen your body's inflammatory response.

much luck and soft hugs to you Renee!
Sylvia

One more suggestion Renee
 

I dont know if you an pull this one off. Maybe if you cant or don't want to consider it now because you don't think your pain levels will permit, you might be able to consider it at another time. I got off of the anti inflammatories. My acid reflux made it impossible for me to sleep at night and I was not able to lie down, no matter how long it had been since I ate anything or took the medications they had prescribed for me. I have to say too in after thought , that I probably could not have stopped talking them, had I not found out what my inflammation triggers were. I had acid reflux so bad that I was miserable and couldn't sleep, even sitting up. So I talked to my doctor and I quite taking them. That made a HUGE difference for me, and I have no longer had acid reflux problems or any of the difficulties, by just cutting that one thing out. If I have a hugely painful Fibro-day, where it hurts unbelievable to sit with my legs elevated, even, then I take ibuprofen, but I only take it that day and one time. I've had family members have serious medical issues caused by constant use of ibuprofen to manage aches and pains of a normal work day. I wouldn't take that with any regularity without my doctor knowing about it.
more hugs, Sylvia

Thanks. I will check with my doctor tomorrow to see what's going on and try one of those antacids. I was already in ER a few months ago with severe stomach pains and they took all sorts of tests and they said they found gallstones, but nothing else in my stomach. They said they were small so unless they started to bother me , I didn't have to do anything. I also had a hysterectomy and endometriosis surgery last year two times. I don't know if the rsd is aggravating that surgical site or if its the gallstones or what. Maybe it is the medicine. I will ask my doctor. I never though of that. All I know is I can't take this pain on top of everything else. I hope my doctor can do something. I'm sorry I'm such a downer. I'm just so tired of being sick all the time. I never had so many health problems, until I got RSD. It's just been a nightmare. I know you understand. And though the doctors are helpful, they still aren't sure what to do either. It's so frustrating. Well sorry again to be so depressing. I hope you are doing okay and thanks for all of the great advice. I don't think I could handle this without friends like you. It's just getting harder and harder to deal with the pain. I have a son (my only child) whom I want to see graduate from college next year, and I'm so afraid that the RSD is going to totally ruin my health and make that an impossiblity. It's so scary. But I'm trying to keep the faith. Thanks again. Soft hugs again to you.

I'll check with my doctor about that. But I tried weaning off them before, and the pain was too much to bear. I haven't had to increase all the pills I'm taking in the past year, but I can't seem to decrease them either. I'll check though. Thanks for the advice.
Your caring means so much to me.

I keep promethazine on hand for nausea. It works well on me and I make sure my Dr keeps me supplied with it lol. When I start having a ton of pain I get really nauseous and nothing usually works, except the promethazine, also called fenergen. Even peppermint doesn't deal with my nausea, and when I start vomiting just leave me be with a big glas of water and a stool to sit on. But then again rsd is different for all of us except the pain.

I will check on that ELISA ACT. Thanks so much for checking on it. I do feel like my stomach pains feel like bad food poisioning too. Except I don't have the vomiting. I just feel pain and extreme nausea. It's pretty bad. Do you think fybromyalgia causes that? I thought maybe it was the rsd spreading, but maybe it the fibro. Well thanks again and I hope you don't get any more of those awful stomach flares. I know milk seems to help ease the pain. I will try antacids. Maybe (if your dr says its ok with your other meds) that might help you too. Well thanks again for caring so much and soft hugs to you too.

Thanks Allanira. I will ask my doctor for that too. I'll take anything that will help with the pain and nausea. I haven't had any vomiting, but sometimes feel like I'm getting close to it. I'm so sorry you have all that pain and vomiting. It's bad enough having rsd pain without all that other stuff too. Peppermint doesn't really help me either, but sleepy time tea seems to calm my nerves and stomach a little for some reason! Maybe that might help sooth your stomach. My husband gets it for my at shop rite. (I can't drive so I have to bug the poor guy to do these things for me). The guilt I feel about that is another downer about this disease. Well thanks again. You have really great advice and I hope you never have anymore of those stomach episodes. I'm so sorry you have to deal with that. I'm here if you need a friend too. Take good care of yourself. Soft hugs from Renee.

I have the sleepy time tea too lol. Its the chamomile it. I have straight chamomile tea too. I love drinking it. It tastes good and it does help a little with nausea. It settles the stomach. Native Americans have used it for pregnant women with morning sickness and other upset tummy issues for generations. Just either a little honey if I'm feeling adventurous or usually regular sugar. I have to sweeten mine a bit. Also if you like ice tea then make your cup if chamomile like usual for hot tea and pour over ice. It actually really refreshing and just as relaxing. My son can even have it because it doesnt have caffeine. I have forbidden him caffeine lol. I keep telling him it willmstunt his growth lol. He's 2 so he doesn't get it.:wink:

My son is going to be 20 years old next week. They grow so fast. Enjoy every moment. It flies by really quick. He doesn't like tea or coffee. I love both. He's strictly a fruit juice and water man! Always has been. (milk too). 2 is great age for a kid. Especially with the holidays coming. I used to love to do the reindeer hooves in the snow and milk and cookies for Santa stuff. Lots of fun. Heck I still may do it. My husband loved eating the cookies and milk every year! lol. Now I have furry kids (2 dogs and a cat) all rescues. They are cool. I have learned so much from you. You are a very smart person. Thanks for all of the helpful advice. The chamomile info is very interesting. I never knew that. Thanks again for being so nice. I'm sorry I've talked so much. I do feel better though. I really appreciate your kindness. Hope you have a good night. Bye for now.

We're here to help each other. I have learned so much from the people here. There are some I wish I could hug they have helped me so much. Be it with information on this stupid diesease or helping to get me grounded again after having a melt down. I have decided after I can start treatment again I'm going to also go see a psychiatrist. Its hard for me to say that, but with as much pain and all the fighting I have done just to find out why I think I need to talk to someone. The good thing is being a military spouse I don't have to pay for all the treatmentsand drs. Except I'm not sure how things are going to work after this switch in insurance. It took 3 months to get a new referral to go back to aquatic pt. By then I was pregnant and couldn't go because the temp of the pool. I will get back into it after this goober boy is born though. I will also be in another area that has more amenities than this poh dunk place I'm in now. Keep in good cheer and enjoy life as much as you can.:hug:

Thanks again. Here I am feeling sorry for myself and you are pregnant with RSD. I'm so sorry you have this at such a young age and while pregnant. I'm 48 old and am an old hag! I give you so much credit for dealing with RSD. You have alot of strength. Our children gives us strength we never knew we had to deal with anything too, so that we can protect and be there for them. My son has been my anchor as I know your children are too. Congratulations on your oncoming arrival! How exciting! As for the psychiatrist, I have been seeing one since I got this disease. He has helped me immensely. I take antidepressents and antianxiety meds along with the meds my pm and neurologist drs for my have given me for the RSD and Fibromyalgia. I didn't want to go, but I was so overwhelmed and scared by this disease, I knew I needed extra help. It's nothing to be ashamed of. We are all dealing with alot. RSD is very scary especially because of it unknowns. Just be careful not to take anything until you are sure it's okay with your drs while you're pregnant and also if you plan to nurse afterwards. Because some meds can possibly hurt the baby while inutero and while nursing, let the dr know all this prior to taking anything. I'm sure you already know this. My dr has helpted alot, but I still need to talk to people going through what I am. The combination helps alot. And don't worry, the pills don't change you. They just make it easier to cope. If you don't want to take pills, a psycologist can help without giving meds. And God Bless you and your husband for protecting our country! I seem to be having a better day today with my stomach, but am still seeing my dr tomorrow to make sure it's nothing serious. Thanks for helping me through my meltdown this weekend. I'm not always that upset, but it was just a really bad pain weekend for me You're a good friend. Get some rest and take good care of yourself and your little ones. And keep the faith. You are going to be just fine.

It is difficult with rsd. Whether your preggo or not. I can't take any meds except a norco every now and then. I am very happy that your stomach is better today and definitely get it checked. My first pregnancy I went into almost full remission. This one I did till about 3wks ago. But every pregnancy is different, just like we are all different. It is hard not being able to get rid of the pain but we do what we gotta do. My babies take priority over me. If the pain gets too bad then I will have to give up breastfeeding and go to formula for him. I already know what kind also. Same one I used on my first son if this one can handle it, but I will start off with breastfeeding so he gets some of my immunity to diseases. Heck I have never had chicken pocks or strep throat lol. I guess this is the universes way of saying hey you may have a great immunity but here ya go. Dont be so quick to be smug ya goober. But I know better. I would love to have my personality back because I am not an angry person and thats how I feel a lot of the time. I loose my temper at the slightest thing some times, or go off crying when my husband says 1 thing. This is not me. I was a happy person that loved challenges. Now not so much. I hope you have a great day.

I get angry at my husband too sometimes and burst into tears when he says things sometimes. He is just trying to help, and I shouldn't get mad, but when you're in pain all the time it's hard to not have a short fuse at times. He understands I don't mean to get mad and that it's just the pain speaking, as I'm sure your husband does too. I used to be a very happy and active person too until I got RSD. I've sorta isolated myself until now. It's good to talk to the others going through this. Other people who aren't sick with this just don't know. It's too hard to describe to them.
I can't stand when I tell people how much pain I'm in, say that I "look good". It makes me mad. Looks aren't an indication that I'm okay. They don't feel the pain I feel, have the limited range of motion I have or the bedsores I have. They don't need to take over 20 pills a day just to get out of bed to function at a minimum. And they don't have the stress from all the medical bills we are drowning in from all the doctors we have to see all the time. Sorry, I'm just venting again. Does that ever happen to you and does it bug you too. Maybe it's just me. Anyway, I hope you have a good night. Remember one day at a time.

Hey Renee,

It's never just you, that's the truth of this condition. It tests us in every way, every day, until we just want to scream and hide. But we don't, we keep going, and every time I hear people like you admitting these feelings but then expressing something funny, cheerful or just strong in another post, it fills me with pride to know that we CRiPSers have such a steely core to even the most fragile body.

Pain, money, family, stress, emotions, pain, grief, worry, more pain... Sometimes life feels as if it's just about the bad things, other times we can laugh and hug and feel great, even if it's only for a short time. Never forget that those days come around again - even if it takes a while lol ;)

They don't hurt us on purpose, they just don't know what we endure because they don't have this thing gnawing at them all the time. It's frustrating, but it's not their fault, bless em. That frustration is why we come here some days, so vent away freely and I hope you feel better afterwards. Sometimes just knowing you're not alone is enough!

Hope today is more smiley for you, and your pain is less. Hang on in.

Bram :grouphug:

Thanks Bram. I know people mean well, and I just get too sensitive when they say I "look' fine, when I hurt so much. My hands and feet are so swollen too and the sores hurt so much.The burning is also so painful. Well, I know you understand. I try to be not let it get to me, but sometimes on my really bad pain days, I just take things to personally. Thanks for making me feel better. And I am feeling a little better today, though I'm still going to have my dr check my stomach out. My day is more smiley today because of friends like you. I want to be strong for others going through this, but today you helped me be strong. Thanks again and I hope today is a good day for you too.

It does hurt when people that are close to us say well you look fine. Its the people I don't know that irritate me lol. I had 1 woman when I got one of thos motor scooters at Walmart tell me she wanted it because she couldn't walk (I had just watched her jog across the parking lot) and I would be fine after all I had a cane that I probably didn't even need. I said really? Then you might be interested in the fact that if you can't walk and I saw you jog ac4oss the parking lot and so did the cameras you can get in major trouble for impersonating a disabled person under the ADA? She said whats that lol. I got my scooter that day lol. Im not going to say don't let them get to you because they get to me. I am going to say keep smiling and be of good heart.:hug:

!st Welcome Renee and sorry for the circumstances that brought you here.

I've read many of your posts and wish I could hug you and say "I know" because unfortunately I have experienced much of what you describe. Everyone here helps lift you up so you can keep fighting and LIVING!
We all help each other through the "pity parties".

I can tell you that most of us share your experiences. The affected body parts, symptoms and treatments vary of course. Unfortunately, I think everyone in this group understand each other much more than people with out this monster disease.

If you follow some of our posts you'll see many of our experiences are very similar at one time or another.
Bram especially is a huge support and I don't know when she finds time to take of herself.

I think we've cried for each other, offered support, expressed our rants (I sure have) and shared treatment information.

This is a wonderful place for all of that and more.
I wish you some relief and strength!:hug:

Thanks Allanira. I will try to not to let it get to me. I just got back from New York. My husband had to drive me to my Endometriosis specialist to get a check up to make sure the endo didn't come back. (I thought that may be why I have had such stomach pain.) Well, good news is I am still endo free, but bad news is I still don't know why my stomach hurts so much. So off to my gp tomorrow to see what route he thinks I should take. I think I'm going to need another surgery to remove my gallstone. Surgery and me don't do well, because of my rsd. I've had spread because of my first endo surgery from my wrist down to my leg. Second endo surgery seemed to go well, but I still have pain in the site the surgery was performed(I think its the RSD). My dr said it could take over a year to heal from it, because it was over a 6 hour surgery because of an infection I got from the first one. Anyway, we shall see. I am so sick of seeing doctors. I have calendar just for my dr appts. It's not much fun as you well know. Well I hope your doing okay and good luck again with your benefits. It will be okay. Just remember to keep the faith.

Hi. Thank you for the welcome and I'm sorry you have the same problems.

I saw some pictures you posted in you photo album of your hand. My hand looked just like a few years ago just after I was diagnosed with RSD. It was also dark purple/red depending on the temp. I thought I had gangreen and was going to loose my hand, but it was the RSD giving me these symptoms. So luckily I at still my hand! It was very swollen and my wrist was locked and fingers bent. I was unable to straighten them. It hurt to move it or have any touch it to xray it. I couldn't even pick up a pick of paper without pain. My orthopedic dr diagnosed it about 4 months after I broke my wrist in several places. He took my cast off before my break was completely healed and sent me to pt for 6 months and a pm dr who gave me pain meds and 8 nerve blocks. I also went to a neurologist for a second opinion and she confirmed rsd and put me on prednisone for a few months. The combination seemed to help bring down the swelling and make my hand look more normal, though the pain was increasing. It was a deep aching pain. The color still changes but is not as pronounced. I still can't move my wrist or bend my fingers all the way, but it's a little better. I also had long dark hair growing on the back on my hand and wrist. It was very furry and embarrassing. The dr said that was also a symptom of rsd.
My fingernails also were growing very long quick. Also a sign of RSD. Though I always wanted to have long nails so that wasn't as bad! lol. After about a year, the furry hair fell out, thank goodness. I felt like a werewolf! Now in my second year of RSD even though my hand looks more normal, the pain has increased. It's now a deep aching, spasiming, burning pain. It has spread to my left hand and down my right leg and foot. I use a cane to walk mostly in the morning, because my feet hurt so much. I drop things all the time because I can't grasp well with my right hand and now the same symptoms are happening to my left hand and wrist now. Stiffness in fingers, redness in joint areas and now my left wrist is locking. When I tell my drs, they say to keep exercising as well as taking meds to control the constant pain. There is not much else they can do. One of them said the prognosis of my RSD was basically in God's Hands now. I started freaking out and started to see a psychiatrist. I take Xanax and Zoloft for my anxiety and depression that have come with this disease. My immune system has been compromised too. I am loosing teeth, hair and am having bone loss. My memory is awful because of meds. (Neurontin is the culprit). But Neurontin (1800 to 1900,mg daily) help me get through the days.) I also take percs and advil for pain and inflammation. This is so sad being that I never as much even took any pills before in my life. Except for Flintstone vitamins! I always love the taste of them! If your hand still looks like the pictures you have posted, maybe you might want to ask drs to try some of the things my drs have done for me as mentioned above. Maybe it will help you. At the very least, you may get more movement in your hand. I hope I helped and am not scaring you. I'm just telling you my experiences, hoping maybe it will help make you feel better. My thoughts and prayers are with you and I'm here if you ever need to talk. The people on this website are wonderful and thank you for your kind thoughts. I am gaining comfort and strength from knowing I have such great support from all of you. I hope I can give the same comfort and strength back. Take good care of yourself.

We all have different symptoms that add up to a whole. Kind of like math that I really stink at. I wish I had long nails. Mine are thick and brittle. I have no hair on my knee and I get red and swollen on my left leg. I don't just mean the knee. I have cankles lol. I have had since this started. I love wearing my slippers and flip flops but can't when the cold sets in. If only right lol. Keep smiling. Now when I can't pull my husbands pants on over that leg I will worry but not before. Renee it might be all the meds your on that is hurting your stomach also. Dont rule that out. Also have your drs confor between them and you about certain anethesias and best way to employ them during surgery if you have to have one. I read that if someone with rsd needs surgery then to do totall block, and extra meds. Also take vit C for I think its a week before and longer after. One of my sisters had endo and she finally just had a hysterectomy. They left the ovaries but to took the main part. Im kind of lucky that after all my medical and dental issues this hasnt spread except down my leg to my foot. Which is hurting like the dickens. That will teach me not to kick the coffee table 2 times in 1 week. It still hurts and that was a month ago. Oh well I can deal. Just remember people to keep positive and don't let anything get in your way. We may hurt and look fine but we are all strong. Even when we have a meltdown. This beast of a disease is making us stronger.:grouphug:

I forgot about the meds maybe hurting stomach. My memory is not so good with these meds either. I will try not taking advil this morning and see if that is the culprit. I hope so. I don't want to go to the dr today. Yesterdays dr trip to the city wore me out and it's sooo cold out here in Jersey today. My nails used to grow long in the beginning. I had to cut them though because they hurt when long. I don't know why. My skin was also very dry and scaly on my rsd hand and my fingers were twisted. Now my nails are more normal except for my toe nails on my feet. They are thick and brittle. It's so weird. The big toe nails are a little yellowish too. Well I'm going to hope its just the advil upsetting my stomach and ask the dr if I can take mylanta. I hope maybe I can just call and find out. I'm tired today. Was up since 5am because of pain and think I might try to nap now. It's hard for me to type today too long because my rsd hand is very cold and stiff. I'm trying to just type with my other hand, but that one's starting to hurt too. Thanks for reminding me about the pills. Hopefully I won't need surgery, but if I do I will make sure to have a list of meds I take every day, permission note from my pm dr and my cell phone in my suitcase just in case (as well as giving info to drs) if I have to stay over. The last two surgeries I had, my meds were not given to me (even though I gave them a list prior) and I started going through withdrawl and had severe pain from rsd and from the surgical pains I had. Apparently, even though I told my drs and hospital (this happened in two different hospitals) about my condition and the pills I needed, they forgot to note it in my chart and would not give me my pills until they could get a hold of my dr in the morning. I got a hold of my husband by asking the nurses for a hospital phone. He came and talked to the dr on call and showed them copies of all my paperwork that he had from my pm dr and surgical dr, so that they could help me. It was a nightmare. I didn't think I would make it through the night. I dread the thought of going back to the hospital and hope I don't need surgery ever again, because of this. Most of the staff had no idea what RSD was and when I told my drs what had happened, they said they would have an inservice about how to dispense meds properly. I like to tell people too, so that they don't go through the horrible experience. I wish people would have inservices about RSD too. Anyway, I'm sorry your leg is swollen and your nails are so thick and brittle. I hope you're having a better day today and I hope it's as pain free as possible. Thanks Allanira for being so nice. Talk to ya later. I'm going to put some gloves on my freezing cold hands and try go to back sleep for a while.

Thanks Allanira for remininding me that my meds maybe upsetting my stomach.

I stopped taking advil today, but am still taking other meds. It's hard without it, but my stomach does seem a little better. Hopefully, by tomorrow it will get even better.

I hope you and your babies are doing good too. Make sure you get lots of rest. You deserve to take good care of yourself. You're a good person.

I've attached my favorite prayer for you and everyone on this website. Especially all of the new friends I have made here. You've all probably heard of it, but I thought I would try to end the day on a positive note. (It also helps get me through the tough times.) I hope you all have as pain free as possible night again tonight. Well here it is in its entirety:

Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
enjoying one moment at a time;
accepting hardships as the pathway to peace;
taking, as He did, this sinful world
as it is, not as I would have it;
trusting that He will make all things right
if I surrender to His Will;
that I may be reasonably happy in this life
and supremely happy with Him
forever in the next.
Amen.

Thanks Renee :) I know that piece well, and there is much truth in it. BUT I must be honest here and say that I do not have a faith, and that some of the ideas in that prayer upset me - I do believe, but in humanity and our ability both to support and love others without the doctrines of different faiths, and to do right by each other and the planet we all depend upon.

I don't say this to upset or offend anyone here who offers their help and advice freely, or to say that I am right and those who believe are wrong. If my lack of faith upsets anyone reading this, then please don't read further. I am just trying to explain my alternative view because I find it uncomfortable when religion is brought into any suffering. I explain myself because I have found that if I mention my lack of belief without some context, some who have a strong faith can misunderstand and the resulting discussion can get nasty. I would hate that to happen here, in a place where there is so much support. It is sad but true.

I was brought up to believe within a Catholic school, I love the beautiful and amazing buildings that were erected both to celebrate religion and to shout the power of the Church, the incredible music created by man to honour it. I feel the power in these buildings, the hundreds of years of deep emotions felt within their walls. But deep within me, I am happier without a faith. Everything makes a lot more sense, and the world seems a kinder place, humanity as a whole representing the good and the bad that is in each of us to one extent or another.

When I believed as a child and young woman, I often asked how various things could happen in a world with a loving God, not to mention the many injustices and crimes that came to light within (and protected by) the Church itself. The many many wars over faith, over whose God was best, saddened and sickened me. I no longer have to ask that unanswerable question, and things are so much clearer.

I say these things not to upset anyone, but just to present my alternative view. I find my strength do deal with life from within myself, and I believe that we all do. I find the idea of pain, illness and loss as some kind of decision by a deity to be quite disturbing, and the idea that we should accept and embrace it as such quite upsetting. I have been told occasionally by well meaning people that we are given only hardships that we can deal with, that he will give me the strength I need if I believe. Ahhhh....I have to stop here!

I think we are amazing, every single one of us. We deal as best we can with some of the terrible, cruel and random things that can happen in life, and we support each other from a common goodness and love of each other that has no other need for explanation than our own kindness and wish to help. And for me, that is the most powerful force for good in existence, and all the more incredible for it.

Thank you for listening, and I hope nobody who has read this thinks less of me for not having a faith.

Bram.

Personally I don't like to see anyone bicker over anything no matter what the topic. I respect diversity.

I personally have faith! For without it, I would have given up a long time ago. I would also rather see prayer surrounding any type of suffering as I have personally experienced being very near death on 2 separate occasions and I can't think of anything more positive to do in times like that.

At the end of the day, being respectful to others beliefs brings peace.

I do hope it didn't sound like bickering! That wasn't my intention at all...

I think anything that gets each one of us through our day is good if it helps even a tiny bit. I have no problem with others having faith at all - I just present an alternative thought when religion as a balm is suggested, that's all.

Everyone here has been so great, I would be sad if by expressing my atheism I have upset anyone.

Hope you all have a good day today, and a better one tomorrow :)

Bram.

Hi Bram,

Sorry I upset you.

I just liked the poem and didn't mean to come across as preachy.

I understand your feelings, for one of my brothers feels the same way.

I won't post any more religious things, so as not to upset anyone.

I am not a religious fanatic, I just always liked poetry and that one just comforts me.

I thought it might do the same for you.

Sorry again.

I hope you have a good day today.

I also wanted to thank you and Allanira again for the medication advice.

I stopped taking advil for a few days and my stomach feels a little better.

It's hard to be without it and I'm still taking my other meds for the pain, but will try to stay off of it for a little while until my stomach feels better.

Anyway, maybe I'll post a T.S. Elliot poem next about cats or something like that. Or some E.E. Cummings poems about love and joy! They are inspiring too.

Bye for now.

Thanks for your kind thoughts too. I appreciate your views too. I do believe faith is important, but posted the poem because I just thought it pretty. I don't want to offend anyone, and I respect all beliefs. We are all struggling so much with rsd and I don't want to upset anyone. It's bad enough that we have that to deal with. So thanks again for your kind words and I apologize again for upsetting anyone. I hope you have a good day too.

Hey Renee, I am sad if you feel bad about this. Just because we think differently on this one issue doesn't mean I don't appreciate all your support and positive comments. Please don't apologise for posting what you did - you meant nothing but good and I do realise that. I'm glad if your poem gives you comfort, i like Shakespeare and Wordsworth and Keats in a similar way. My response wasn't an attack on you personally and I apologise if that's how it came across.

Poetry posting is a brilliant idea! Maybe you should start a thread on that and we could all put up our favourites..... I wrote a long poem about a cat once, years ago, wonder if i still have it....:winky:

I'm glad your stomach is feeling better - I had to stop taking ibuprofen because of stomach problems (and later Gabapentin for the same reason) - I'm not sure whether Advil is a similar thing under a different name?

Take care of yourself today and be as pain-free as possible.

Bram.