CRPS Question: Itching

Posted by rags @rags, Tue, Mar 12 7:33pm

Hello I was officially diagnosed last week with CRPS after 16 months of being sent back and forth between Podiatry, Ortho, and Neuro doctors.

Sept 2017 I fell and had an avulsion fracture. This didn’t heal and I was in a boot for 11 months before I finally had surgery Aug 2018. Surgery fixed the FX and ligaments but I never regained dorseflextion of my ankle. After EMG and MRI all coming back fine, they finally called it CRPS. My PT has been telling me I have CRPS since Feb 2018 but my drs wouldn’t officially diagnose.

Before surgery I didn’t have any nerve related pain. Just no dorseflextion, severe aching pain, and extreme swelling. After surgery all of the nerve pain started and has continued. I now also get muscle spasms, and electrical shocks through out my entire body, and I have a constant buzzing feeling in my injured foot and leg.

Neuro put me on Lyrica which was helping once I was at 600mg, taking it 3 times a day. But 6 weeks into taking the meds I started itching all over my body and after prednisone and the itch coming back they said I was allergic to the meds. I was weaned off the meds in a week, and was put on Trileptal. 600mg, taking it twice a day.

I’m a week into the meds and I’m still itching all over. It had slowed down and almost stopped when I was weaned off the Lyrica and then off it for 3 days. And now that I’m 7 days on these new meds I want to rip my skin off again. But tonight while it’s getting worse it feels more like tingling itchy then actually itching. On top of the meds not helping with the pain. I’m going to call the dr tomorrow but he didn’t want to listen to me about the itch and sent me to my PCP the first time. I feel like this is nerve related but he insisted it wasn’t.

So my question is has anyone else been itching cause of the CRPS. Could this be a symptom of that or is it truly due to the meds and if so where do I even go from here. I feel like I’m losing my mind. I have black and blues all over my body because I’m scratching so much.

Please help..

Liked by rsnowflake

Hello @rags. I would like to invite @mam14, @rsnowflake, @struggler23, @barbbie, @lizzyisme, to this conversation as they have all recently discussed having CRPS and may be able to share whether or not they have dealt with any itching as a result.

@rags, itching must certainly be a frustrating side-effect of what you are going through. While we wait for others to share their experience with treatment and side-effects, is there anything that has helped with relieving the itching?

Have you tried something like Benadryl for itch? I also recommend soft, white gloves on your hands, so you dont rip yourself apart. Bathe in Epsom salts to relieve your skin. Calamine lotion for your skin. What illness do you have? I don't know what the initials stand for. I have peripheral neuropathy, and often itch, and have given up trying to figure out why. I sting, too. Whirlpool baths may help you. God in heaven, how you are suffering. I am so sorry. Lori Renee

@justin@rags

First, thanks rags for writing, and thank you Justin for bringing my attention to this.

I have an allergy list to meds an arm long. Most of my reactions were laryngeal edema, anaphylaxis, and hives. I either read it or was told it,but CRPS and allergies go hand-in-hand. I also have celiac, so I am gluten free, lactose intolerant, and have true allergic reactions to kiwi and watermelon. I was on lyrica before being dx with CRPS for fibromyalgia. At an appt with rheumatologist I came down with laryngeal edema. He gave me a shot and that was the end of lyrica and the nasty weight gain. I like my spinal cord stimulator, cuts down on need for meds and helps with pain and the ability to move.

@barbbie

@justin@rags

First, thanks rags for writing, and thank you Justin for bringing my attention to this.

I have an allergy list to meds an arm long. Most of my reactions were laryngeal edema, anaphylaxis, and hives. I either read it or was told it,but CRPS and allergies go hand-in-hand. I also have celiac, so I am gluten free, lactose intolerant, and have true allergic reactions to kiwi and watermelon. I was on lyrica before being dx with CRPS for fibromyalgia. At an appt with rheumatologist I came down with laryngeal edema. He gave me a shot and that was the end of lyrica and the nasty weight gain. I like my spinal cord stimulator, cuts down on need for meds and helps with pain and the ability to move.

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Hi I'm Renee. That's a really weird story , because it's MY story to the T word for word. I had severe hives for 10 years. No 1 could find what was caused hives, face swollen, and anifalaysis no diagnoses then I break my ankle and get crps!!!!! And that's you and that's me. Where do you live?

@rsnowflake

Hi I'm Renee. That's a really weird story , because it's MY story to the T word for word. I had severe hives for 10 years. No 1 could find what was caused hives, face swollen, and anifalaysis no diagnoses then I break my ankle and get crps!!!!! And that's you and that's me. Where do you live?

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@rsnowflake,

I live in New York State. And you?

@JustinMcClanahan

Hello @rags. I would like to invite @mam14, @rsnowflake, @struggler23, @barbbie, @lizzyisme, to this conversation as they have all recently discussed having CRPS and may be able to share whether or not they have dealt with any itching as a result.

@rags, itching must certainly be a frustrating side-effect of what you are going through. While we wait for others to share their experience with treatment and side-effects, is there anything that has helped with relieving the itching?

Jump to this post

Thank you so much for adding others. The only thing that has helped was being on prednisone. But once weaned off it’s slowly coming back.

@barbbie

@rsnowflake,

I live in New York State. And you?

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@rsnowflake @barbbie

I live in New York. I was pretty healthy before my ankle fracture. But do have severe environmental allergies. I’ve never suffered from hives prior to Jan 2019.

I’ve been reading that people with CRPS, their health starts declining once diagnosed. I feel like that has started since Jan. 13 months into this mess.

I really believe the itching is from the nerves. But I just don’t feel like anyone listens.

I don’t know which dr to go to to figure out my symptoms. Drs say take this med and then pass me off to the next dr.

My next stop is pain management but would he deal with the itching too. It’s my husbands dr so I know he won’t prescribe meds. So then what?

I know this isn’t an early find. I already have muscle atrophy in my calf and my ankle. But I don’t have the severe all day burning pain. But have everything else all day long.

@rags

@rsnowflake @barbbie

I live in New York. I was pretty healthy before my ankle fracture. But do have severe environmental allergies. I’ve never suffered from hives prior to Jan 2019.

I’ve been reading that people with CRPS, their health starts declining once diagnosed. I feel like that has started since Jan. 13 months into this mess.

I really believe the itching is from the nerves. But I just don’t feel like anyone listens.

I don’t know which dr to go to to figure out my symptoms. Drs say take this med and then pass me off to the next dr.

My next stop is pain management but would he deal with the itching too. It’s my husbands dr so I know he won’t prescribe meds. So then what?

I know this isn’t an early find. I already have muscle atrophy in my calf and my ankle. But I don’t have the severe all day burning pain. But have everything else all day long.

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@rsnowflake @rags,

Am waiting for reply from a pro. From my experience I stay away from pills. I do have a tens unit for pain, script for lidocaine patches and lidocaine -prolocaine cream, and my spinal cord stimulator. For extreme pain or parts not covered by stimulator, I do take prescribed oxycodone. I do take it sparingly. I do have about seven left out of thirty that I got in July.

Liked by lioness

Update-

So the itching was from the new medication Trileptal. My dr upped my dose on Thur and I woke up in complete hives. I called Dr. (on call dr called me back not my dr) right away and they told me to stop taking meds and take Benadryl. Woke up Sunday still in hives and they called in prednisone. I called my dr on Monday and he said to stay off all med for a week to let my system clear and call him back.
I tried going back to work today and couldn’t even make it a few hours. My whole body is shaking, my legs from my waist down feel like vibrating cinder blocks that are being electrocuted. I came home and took a tramadol which helped with the heavy ness in my legs but that’s it. I feel just awful.

I don’t see pain management until 3/28. What else can I take to ease this pain. I seem to be allergic to all the nerve meds.

Hey I'm Renee. I was diagnosed 2 years ago. After I broke my ankle and was in a boot 4 8
months. Sounds familiar! My orthopedic surgeon couldn't understand why all the xrays show it was healed. But my foot was so swollen and purple. I forgot to mention I've had undiagnosed hives for the last 10 years. Seems too much to b a coincidence.

@rags

Update-

So the itching was from the new medication Trileptal. My dr upped my dose on Thur and I woke up in complete hives. I called Dr. (on call dr called me back not my dr) right away and they told me to stop taking meds and take Benadryl. Woke up Sunday still in hives and they called in prednisone. I called my dr on Monday and he said to stay off all med for a week to let my system clear and call him back.
I tried going back to work today and couldn’t even make it a few hours. My whole body is shaking, my legs from my waist down feel like vibrating cinder blocks that are being electrocuted. I came home and took a tramadol which helped with the heavy ness in my legs but that’s it. I feel just awful.

I don’t see pain management until 3/28. What else can I take to ease this pain. I seem to be allergic to all the nerve meds.

Jump to this post

@rags

Have you tried any pain patches with lidocaine? Mine are prescription but it only has 5% lidocaine while over-the-counter has 4% Another thing that has been working for me is Biofreeze.

I also like Biofreeze and Lidocaine OTC. But when I recently had an itchy rash I went to my Dermatologist and got a prescription ointment plus she recommended Zyrtec and Allegra. I have PsA, Sjogrens, IBS and Hashimotos.

I haven’t tried patches. How do they work? I can just go to the pharmacy and pick them up?

I will try anything to feel human again.

@rags

I haven’t tried patches. How do they work? I can just go to the pharmacy and pick them up?

I will try anything to feel human again.

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@ rags

They are really simple to use. Just pull off the covering on the sticky stuff and place it where you think the source of the pain is. Mine are use for 12 hours and off for 12 hours. I can use up to 3 at a time. I haven't used the over-the-counter but imagine the directions are pretty much the same. Let me know how you do. i care.

Well I used the patches with not much success. My dr finally called in a script for pain meds.

Had my first apt with pain management and he staged me as late stage CRPS since my foot was freezing compared to the other one.

He is putting in for Sympathetic nerve block. 3 of them a week aprt each.

I’m terrified cause I keep reading people end up in more pain then when they started and don’t work.

He also said I will most likely not get full dorsiflexion back in my foot and getting a drop foot brace is the best way to go right now.

Ugh I’m so cunfused and upset. I knew by reading this isn’t fun but when you finally get the bad news it just breaks you.

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