Reflex Sympathetic Dystrophy (RSD)

[katiekat]

I'm a recently diagnosed RSD/CRPS patient and I could use some support and guidance. I was hit by a car just over a year ago while walking my dog through a crosswalk and the injuries I sustained to my knees in that accident are what triggered the RSD (BTW - my dog didn't get a single scratch). I've never even heard of RSD/CRPS until all this stuff started happening to me. I can't believe the incessant pain! I'm sure all of you can relate. It ranges from constant needles & pins-tingling to outright burning and sharp, stabbing pain. I don't even have to do anything for the pain to become immobilizing. The lack of sleep is killing me. I have muscles twitching around my kneecaps and my knees are so swollen that when I stand it looks like I have something the size of golf balls sticking out of them. Both of them burn intensely, not always at the same time, from hours to days on end. The burning is an internal and external sensation, really hot to the touch. They can burn to the point where the skin cracks and peels off like a sunburn! They also get intensely cold, but that doesn't seem to be as painful. The skin color changes from red to purple to blue for no particular reason. I suppose on a positive note I should be happy that I don't have to shave my my legs so much anymore but I don't think it's a very good trade-off.

Of course, I have to go to work regardless of everything (as I'm sure many RSD sufferers do) and while my co-workers and boss do their best to understand, I think they are reaching their limit. My appointments are beginning to interfere with my work to the point where my boss is expecting me to make up the time instead of using vacation time (I've run out of sick/personal business time). When I do the make up time, I end up missing my evening physical therapy and acupuncture appointments. I love what my job and certainly can't afford to lose it or go on disability. I'd lose my house if I went on disability. I don't know what to do about my job situation. If anyone has any advice on how to handle that I'd really appreciate it.

Aside from the meds I was already taking for a previous condition, I am currently taking Soma (only in the evening), Ultram, Topamax, Neurontin, Wellbutrin, Imitrex & Naproxen. I've previously been on Lyrica, Celebrex, Oral Steroids, Lidoderm patches and various other meds that had little effect. I did an epidural nerve block that also had little effect other than cause a heck of a lot of pain in my back! I've tried homeopathic remedies, too. I'm desperate, I'll try anything. The migraines were quite a surprise. I think I had about 5 in all my life before the accident and now I get 1 every week or 2. I've had 4 in the last 4 days! What the heck?!?!? Anyway, does anyone have any suggestions for any medications I should ask my neurologist or orthopedic doctor about that might work better?

I do aquatherapy, at least as long as my private insurance feels that I need it (gotta love them!). Then I have to wait until I get more visits approved. (The lawsuit from the accident is still pending and not all my providers will go on a lien with the lawyer.) I get acupuncture too, which I feel is quite helpful. I will be re-starting standard physical therapy next week so hopefully I will make some progress with that. All in all, I've shown some improvement but it's so small it's hardly measurable. Especially when I'm up all night in excruciating pain, contemplating on whether or not it's too late to take a vicodin and still make it to work without driving under the influence and causing an accident.

My family has suffered from having to see me go through all of this. I'm a 38-year-old single mom of 2. Fortunately, my mother is living with me, however, she's no spring chicken and there is only so much she can do! I'm still at the beginning of all this, according to my doctors. I'm pretty scared about this whole thing. The more I read about it the scarier it gets. This has changed my life so much. I used to go out and do stuff all the time. My family and I used to go hiking, camping and do all sorts of stuff. Now when I get home from work, I have to lay on my sofa with my legs elevated and ice packs on my knees because of the swelling and the red hot burning. Wow, what a wonderful life! I try going to the gym sometimes and even with knee braces on it's a struggle. Heck, some days I'm lucky that I can even make it upstairs to my room to go to bed! Of course, everyone around me is an expert but they don't know what I'm going through. This is why I'm writing here in this forum. I figured who better to give advice and support than others going through the same thing?

My big question is, will this go away?????

Anyway, I don't post in forums very often and this is a very touchy subject for me so I apologize for the lengthy post. I appreciate any input anyone can give. Although it's awful that there are so many RSD sufferers out there, I'm so glad I'm not the only one and that there is someone I might be able to relate with. This is a really scary thing to go through alone.

[Lily]

KatieKat,I sorry for all the pain and trouble you have been through.I'm 36 with two kids myself and have fully body rsd.If i were you i would not sign anything with that pern's insurance comp. because having rsd you will be faced with some major medical bills,Hopeyou have a lwayer on this.I know it's hard woring wih the pain you have.I'm perment disabled so i can't work still waiting on disibility .You may ask your neurologist about the spinal cord stimulator to see if it would help you.The meds you are taking is mostly what i'm on but i have to go to the pain clinic and they have put me on avinza in which i don't know if you could take it and work.It's a type of morphine.I know i site you could go to if you like but you have to join rsd support.com that i know you would find the answers you need.They are hundreds of people there and if you post a question someone will know the answer or it's under post that have info already on it.I'm on the forum and if i see your name i would be glad to help you find what you need.Hope to hear from you soon and hope everything works out for the best.Lily

[katiekat]

Hi Lily,

Thanks for the response. I'm so sorry to hear you have full body RSD! How awful! Yes, I do have a lawyer and no I haven't signed anything. The driver's insurance has admitted liability. The only thing we are waiting on as far as that goes is to makes sure I don't need surgery on my knees (my ankle and wrist got injured too but they have healed much more than the knees) and also to determine if my RSD will be cured or be a lifelong condition. Once that is all decided we go to court.

I am scared to do a spinal cord stimulator. Thanks for the info on the avinza. I will look into that. I've researched a lot of the RSD/CRPS sites. This is the site I liked the best even though it isn't solely dedicated to this one disorder. After reading all the posts and the info I felt more comfortable with this site and the people on it. I'm not sure if I've looked at rsdsupport.com but I'll check.

Have any of the treatments you've done helped you improve at all or given you any significant relief? Thanks for the advice!!

[Lily]

KatieKat,I just wanted to let you know i found you on the rsd site.I hope we can pm each other sometime and it's private.I wanted you to know you have to post five or more thing on the forum before they let you pm. .Please let me know when you can pm and we can chat.I'm so glad to meet you but not this way.Maybe we can help each other.Hope to hear from you soon.Lily

[rsdsurvivor]

Hi Katiekat,

I was recently diagnosed with RSD also. In January I was cleaning hallways in an apartment building and tripped and fell through a plate glass panel next to the exit door. The glass wasn't tempered so my head broke right through it and I suffered a concussion, sprained neck, cuts (still have glass shrapnel in my forehead), and a sprained wrist. My wrist simply wouldn't heal and my hand and fingers began to swell. My pinky finger joints grew enormously and my finger started to bend into an abnormal position. My Orthopedic Wrist Specialist kept telling me that she was baffled by the amount of pain I was in and by my weird swollen hand. I ended up going to the best wrist/hand doctor in the Northwest and he immediately diagnosed RSD. He sent me back to my general pracitioner for treatment. She had never treated this illness and took his suggestion and put me on Neurontin and Vicodin. She told me she would research it further and I am to let her know how the drugs are working. The Neurontin is awful. I'm sleepy all of the time, my stomach hurts and I have no energy. My attorney is acting frightened of my case since I told him about the RSD. I guess he thought it would be a simple settlement and now realizes he's going to have to work. It scares me that he's scared because I have no health insurance and know that my only hope is to get enough money (the glass was against code and should have been tempered) to take care of myself in case of being unable to work. Right now I can do stuff with my right hand, but my left hand doesn't cooperate and my fingers hurt all of the time. It is now spreading into my left leg which really depressed me. The thing I want to tell you is this... Don't give up. I can't give into this illness. I am 49 years old and have been planning to buy a B&B. I love to cook, I manage an apartment complex and I also have operated my own cleaning service for 19 years. I simply can't allow this to own me! So far (and I'm early into it so maybe I'm a bit more optimistic than some) the things I have found really helpful are the following... Work the painful area as much as you can and no matter how much it hurts. Keep making it bend, work and flex. Massage therapy has been really helping me a lot, however sometimes after I go I am completely pain free and other times it increases my pain for a day or so but I don't think it's doing harm, just this stupid mixed up nervous system thinking something injured me. The Neurontin is new to me and I hate the side effects, but am going to give it a try as it has been known to put this into remission. I also take the following natural supplements which seem to be helping: Juice Plus, Glucosamine, St. Johns Wort, Vitamin C, Lots of B-Complex, Calcium with Magnesium and Vit. D, and Fish Oil. I also do a daily meditation and prayer. When I meditate I take several deep breaths and imagine a clear clean fluid leaving my brain and filling up my body like a vessel. I imagine it healing anything that is injured and soothing my pain. I even imagine that it's putting out misfired nerve signals like water putting out a firecracker. Then I imagine my fingers and toes opening as valves to let the damaged fluid out of my body and the fluid going down a drain and leaving me healthy and strong. I am going to fight this illness. I wish others were more hopeful then discouraged, but I understand that it is an terrible thing to be diagnosed with. I hope something I said here helps someone to stay positive and to keep trying to fight RSD. If anyone would like to share a story or chat and give/get moral support my email address is [moderator note: e-mail address has been removed].
Good luck,
Dee Dee

[Lily]

DeeDee,Thanks for your support.Everyone needs support having to battle this disease.I'm really trying hard not to give up.I have a family to live for.I 'm glad i'm blessed with friends like you to give me the extra push to go on.It is really good to hear back from you like i said i'm glad i have friends with a positve attitude because if we don't look at it positive it will only bring us down.I'm glad you are looking at starting a B and B.That will be great for you since you like cooking and all and i wish you luck.Neurotin does the same to me and it has made me put on weight.I hate it but i can't get my legs to work if i don't take it.I'm on 1800mg a day and that's alot.I wish they could find something else for me instead.Prayer is everything.I have been blessed and without God in my life i wouldn't make it.I vaule our friendship and i hope to chat with you when you get the time.Hope to hear back from you soon and thanks again for the support and uplift.If you ever need me i'm here for you always.Love ya,Lily

[rsdsurvivor]

Hi again Lily,

I also wish there was something other than neurontin, however at least it seems to be easing our pain enough to function to some degree. I feel bad for you that it is in your legs. It has started to try to get into my left ankle and foot, but I had my massage therapist work on it and do some nerve accupressure. It was so sore the following day that I worried I had made a mistake in having her massage it, however now (three days later) it almost feels as though it's gone from my foot right now. I am so grateful that for now I can walk, so I go on walks every other day now. It's tough because the next day my ankle and foot are very sore, but I know I have to keep the muscles strong. The old "Use It Or Lose It" theory. My hand and left arm are a whole different story. It doesn't even look like my hand anymore. I can't even turn it palm up to put my vitamins in it. I drop things all the time and when I try to do a simple task like opening a doorknob pain shoots from my fingers up to my elbow. I am still working out several hours a day. I have a squeezy toy that I squeeze as much as I can and a set of weights that I am using to try to get some muscle back. It's almost a joke since the weight I use is about three pounds, but that's all I can lift with my left arm. I agree that Faith in God and the wonderful bodies that he created for us to live in are our best allies. A friend of mine told me to stop being disgusted by my arm and to love it and nurture it. I have actually seen results when I do this in my meditations. Love yourself, nurture yourself and stay positive. Laughter releases endorphins!!
Stay in touch,
Dee Dee

[Lily]

Hi DeeDee,I hope and pray you regain the use of arm and hand.You're right use it or loose it.I sit and think about others who are bed bound can't move or even speak.It makes me thankful for what i can do.I'm to young to give up and i will fight to the end.I now face rsd full body and it's scary to think what my future might be but i have to live day by day and not worry about tomorrow.I have friends with rsd and one has it in her internal organs.I didn't know for a long time it could go internal and i pray that don't happen to me or anyone else.Maybe they will find a cure for rsd.I don't know if you are aware but there is a petiton to sign on this website to send to congress to try to have rsd awareness day,The monitors of this website are working hard to help us get it done.If you would like to sign it. look on the rsd index and it will show you what to do and were to go.I'm so glad they are willing to help us but we have to help them by signing and have our family and friends to sign also.it's easy and only takes a minute if you would sign it.Then maybe it will get the ball rolling and find a cure.Thanks for your support, I value our friendship and we all need each other to lean on.Hope to hear from you soon.Lily

[G0J0G0]

rsdsurvivor & lily
g0j0g0 here, I read with much interest the entries and agree whole heartedly about meditation and the like... There is no coping with this monster w/out God and His faithfulness. But at the risk of butting in I wanted to save you a minute in finding the petition, below I pasted the link for the site for signing. Thanks for your positive attitudes for they serve to motivate and help in saying carry on and don't give in for every monster has a weakness... Copy and paste the link to your address bar for direct access to the petition
Thanks again and be blessed, g0j0g0

http://forum.neurologychannel.com/hc-forum/reflex-sympathetic-dystrophy-rsd_peer-to-peer_f149/petition-for-rsd-awareness-day_t42704.html

[Lily]

GoJoGo,Thanks for putting the petition link on here for everyone to sign.And you didn't butt in. you are a very caring and supportive person and also a very good friend.You have help me so much by just listening to me.You are right,We can't cope with rsd without God in our lives and you shouldn't have to be worried of taking a risk.People need to know him and let him take over our burdens we can't carry.I don't know what would happen if i didn't have God in my life. Hope you have a wonderful day!Lily