Reflex sympathetic dystrophy/Complex regional pain syndrome plus shingles

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Long story bit needing help ! 10 months ago I had a thumb joint replacement on my left hand due to destructive arthritis. Entire hand and forearm in cast for 7 weeks. Therapy for 10 weeks. Diagnosed with Reflex sympathy dystrophy by both hands by therapist and hand surgeon. Confirmed with rheumatologist. Sent to pain doctor. Had 2 root nerve blocks, one in April, the other in May. Neither one worked. End of June I got shingles in left hand / thumb surgical area. Acyclovir started second day of rash. 10 days later, right hand started to get lesions. Diagnosis with shingles in it. Another round of acyclovir. Hands are still, 10 weeks later, red, swollen, extreme unbearable itching and pain. No blisters but rather small red raised bumps for a couple of days, then turns into entire thumb side of hand one bright red swollen painful itching mass. I am about to lose my mind ! Is it shingles holding on ? Or the regional pain syndrome? Both ? My doctors seem to be "punting" me from.one to the other. Do I need an infectious disease doctor? Any help would be beyond appreciated. Thank you

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  • Posted

    sallydu, I don't think the RSD would be itching sounds like 1 of 2 things are happening either the shingles are the antibiotic could it be that your allergic to the medication by chance I know sometimes when your allergic to something it wil cause itching and as you know shingles deffinetly causes itching. I wish you all the best of luck with whatever is going on. I know the RSD will cause discoloration but never heard of the itching, swellling is also caused by RSD but the rest I don't. Let us know how things turn out, I wish you all the best and hope they figure things out soon.

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    • Posted

      Thank you for your response. I've been trying benadryl and it doesn't seem to help the itching or swelling. It does help me get a little bit of sleep though. I finished the 2nd round of antibiotics a few weeks ago. And the rash and swelling is very localized to the area on hands around the thumb, wrist and top and bottom.of thumb joint/pad area. That is why I was wondering if it could be the RSD. I'm going to try to see my general practitioner today and pray they have something for relief. If. RSD doesn't cause itching, it looks like it is still the shingles. I'm guessing with nerve damage, nothing is easy to fix. Thanks again for your replies.

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    • Posted

      Did you do the Ibuprophen/Benadryl combination ? The reason I ask this is they work together one to help the swelling and the other helps flush it out through the blood somehow, I get this information from a Doctor so I'm not just suggesting things I hope you know this. Do you think that the swelling could be a result of the Shingles when you would scratch ? Because you know that we can control what we do when we are awake but not so much when we sleep lol  I know this from waking up scratching an itch. Did you take the Benadryl 3-4 times a day and if you just took one you may be like my son, he takes 2 at a time and he was swelling so bad he gained 30 lbs in less than 3 months. Since he's been on his medication in June he has lost almost 20 of the 30 lbs he had gained. For some it takes less and some it takes more...Keep us updated as always... God Bless.

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    • Posted

      Thanks for checking in on me ! Yes, i did try the benadryl and ibuprofen. Still no change or relief. So i went back to my dr. Several things have gone on. First my doctor has ordered an MRI of my hand. I have this in 2 days. He is very concerned that my system is rejecting the alograft joint replacement in my left thumb. He also doesn't believe it's still shingles. He's leaning back on the RSD. My right hand is following the same pattern as my left, i.e. rash, burning, itching, swelling. He prescribed Visteril. I take it at night and actually have slept. I am trying to stay calm. But it's like I have fire ants on the inside and shards of glass on the outside of both hands and forearms. Not fun. I have also noticed this past week that wind or air blowing on my arms is extremely uncomfortable. I think I have read this is another rsd symptom. I'm hopeful the MRI will give an answer, but have no idea what will be done if the joint replacement has to come out. They removed the entire thumb base joint to do the donor alograft. I'm just trying not to think about it. I am glad to hear your son is finding some relief. Once again, thank you for checking on me.

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    • Posted

      God bless your heart honey, I'm so sorry your dealing with this in both hands it's an aweful, horrible disease. My Son says that like when it is fixing to start raining, before I can even feel it he'll say mom I already feel it and I was like what? but just like clock work a few minutes after that I feel it and he wears shorts all the time he says pants bother his leg and the wind, water, etc... He actually does a shower as a type of therapy to get himself used to it again but he won't take a shower in our bathroom we were trying that because you can just step into our shower and in the other bathroom he has to step over in the tub but things are so sensative that the water sprays harder out of our shower and it's lighter in his so he does his because of the water being lighter. Sweetie you have really had it though with the Shingles along with it. I hope your doc finds something to help you real soon...

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  • Posted

    Hi Sallydu

    God love you, it sounds like you've been living the nightmare but I totally agree with 3eva96035 regarding the itching. RSD won't cause that but can certainly be responsible for other symptoms, but does sound like an allergic reaction.. Just out of interest have you tried good old fashioned benadryl? The antihistamine will help the itch of course but may also help inflammation. I'm hoping that symptom will settle down so you can start dealing with the RSD.. As mentioned, keep us posted and hang in there!!

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    • Posted

      Benadryl helps me sleep for a couple hours, but doesn't ease the itching or swelling. I think if it was an allergic reaction it would be more widespread and not just on the thumb areas of the hand and wrist. Trying to get in to doctors today. Maybe I'll find an answer. If it's most likely not the RSD, then I guess it's a very stubborn cause of shingles. Thanks for your reply. Appreciate it very much

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  • Posted

    Sallydu, Andrea is right there's nothing like good old Benadryl, because Histamine in the body is what causes the swelling and Benadryl is an antihistimine and good for allergic reaction also. It's bad that you have to deal with several different situations and you having the RSD. I hope everything goes better with you and you start getting some ease because the RSD is enough to cope with and it needs no help from the other things that you have going on but do keep us informed about how things are going with you and also God Bless you and I wish you well.

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    • Posted

      Thanks ! I wish I could go back to the arthritis pain and not of had the joint replacement! It's like I've gone from bad to worse ! I had never heard of RSD . But God Bless everyone that is dealing with it. It's great though to have others who understand it to talk to. Thanks for your reply. I'm going to try and see a doctor today.

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    • Posted

      Sally,

      I wish you the best of luck, and I hope that you can get some help with the pain and suffering/ itching that you are going through. Keep us updated & God Bless You & keep you is my prayers.

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    • Posted

      Sallydu,

      I don't remember everything that I've told everyone but my son has RSD. and he was to the point on night he couldn't walk and he takes a combination of Ibuprofen and Benadryl the swelling was so bad nerves were being compressed and within the hour he could walk with his crutches again so maybe a combo of Ibuprofen/Benadryl will help.

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  • Posted

    I have had CRPS for 2 1/2 years and during this time I have had a shingle-like rash, very itchy and nervey, red and swollen.  It responds to no medications, but gabapentin makes it feel less painful.  Also, I take regular baths in medium temp water with 1/2 cup of baking soda.  This calms the rash down more than anything.  Whether or not the rash is caused by the CRPS...I don't know, but I didn't have it before.  Benadryl  does not help.  Also, my lesions are filled with blood, not clear fluid.  I don't know if this helps, but just thought I'd share.  Good luck!

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    • Posted

      I saw my provider today. He ordered an MRI and a referral to a neurologist. He is concerned that I am rejecting the allograft in my right thumb and or a tendon of mine that was pulled down and wrapped around the allograft is dying. Definitely thinks I have CRPS due to the rash and burning pain are also on right thumb area. It's funny you mention warm baths. Seems the only thing that really calms it down for a short while is warm to almost very hot water. Your description of itchy, nervy, red and swollen is perfect. It's an itchy burning nerve feel. Very red and extreme swelling. I will let you know if anything shows in MRI or the neurologist has any great answers. I'm not getting my hope up, but am praying someone, somewhere can help. The gabapentine knocks me out, so lately I've just taken it at night. I don't notice a change. Just curious, after the first shingles rash appeared, did it get any better then worse ? Just when the rash looks like it's almost gone, it comes back, worse then before. Thanks again. Hope you also find better relief.

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  • Posted

    You might ask your doctors for Lidoderm patches.  They were given to me after 3 elbow surgereries to stop the burning and itching pain...pain moved to my feet...The lidoderm patches were originally developed for the itching that comes with shingles but doctors have realized that they will numb out just about any pain for a while...they are made by Endo....google for more info...good luck!
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    • Posted

      Thank you ! Anything for a few hours relief ! I will ask him. I'm sure he will prescribe anything to help. So your elbow pain moved to your feet ? Another part of RDS/CRPS ?

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    • Posted

      Sallydu,

      I am do very sorry! RSD on it's own is a living hell, but to have shingles on top of the RSD is unthinkable! But I can understand how a person with RSD could get shingles easily. They're both nerve conditions. Just a thought to try to help you, maybe you could use the benadryl spray. It worked great on my daughter when she had the chicken pox. And another thing you might ask your Dr to prescribe is phenagan in cream form. You have to get it from a pharmacy that does compounds. It was a lifesaver for my aunt when she had shingles. It really helped with the pain and also calmed her.It also helps other meds work better and will help you sleep.

      Ii know your dealing with a whole lot, but stress is your worst enemy with RSD and shingles! Stress from the RSD may have casused you to get the shingles.

      My daughter has had them several times and she always gets a break out when she is super stressed. So, whatever you can do, find ways to keep yourself calm. Also, when you get over the shingles, which I think you still have, ask your dr for the vaccine to prevent further breakouts.

      Praying for you and hoping you can find some relief real soo, as I do for all my fellow RDS sufferers.

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    • Posted

      Thank you so much. Everyone's kindness is enough to make me feel better ! I will ask for Phenergan cream ! I have a compound cream for the RSD with lidocaine, gabapentine and an anti-inflammatory in it. I've used it, and it helped some in the beginning, but not anymore.

      Today, I have a patch under my arm, along the nerve path, breaking out. It's like whatever it is going on, it's not close to being done.

      I'm so sorry your daughter deals with this. I wouldn't wish it on anyone !!

      Thank you again for your suggestion. I will get ahold of my doc and try to get that.

      Oh, stress ? Who has that 😉 !lol

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    • Posted

      Honey, you know we all have that, stress that is I know I think I have enough for everybody in the whole world today, too much going on and can't seem to catch a break from anything. I hope somebody has said something to help you though. There are still good people out there, there are a few of us who don't want to treat the world as it's foot stool ...

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