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Hair Loss with CRPS

Posted , 17 users are following.

ukila1219
ukila1219

Hello

I was wondering if anyone has experienced hair loss from CRPS? I was diagnosed over a year ago after being injured at work. It was initially my back/rib/torso area but has spreaded to my shoulder/arm/wrist/hand/lower leg and foot. About 4 months ago I noticed my hair begin to become very rough and shed a lot and about a month ago it begin to come out in clumps! I cut my hair off because I couldn't stand to just watch my hair come out. As of today its still coming out as I rub my hands through it 😢😢

I now have a SCS which my PM doctor says should stop the spread. The SCS is actually working well (despite my skepticism). My pain levels are down with the help of meds. I also can tell the difference when I don't take the meds with it( I'm desperately wanting to kick the opioids, hate the feeling). I'm slowly adjusting to the idea of the new life that I have been given.

Living A Nightmare While Woke...

1 like, 19 replies

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  • eva96035
    eva96035 ukila1219

    Posted

    ukila1219, My son has CRPS, and he hasn't experienced that but I have heard that it is common especially in severe cases of CRPS, I'm sorry to hear that you have had such a rough go with this. I have heard that the sooner you catch the CRPS the easier it is to manage. How long has you had CRPS, and how long after you had symptoms were you diagnosed and started on your med's ? Keep us updated to let us know how you are doing. By the way what is SCS and how does it work exactly ? God Bless you and I hope you find relief soon.

    • ukila1219
      ukila1219 eva96035

      Posted

      Hello Eva!

      I went a year without any invasive treatment. I've read that after about 6 months and no treatments you're pretty much doomed! I have high hopes and I'm determined not to continue let this beat me.

      SCS is for Spinal Cord Stimulator. Its a device that's implanted to help with pain. It sends stimulating signals through the nerves to help block the pain signals to the brain. So far so good. Only downside is that it doesn't help with the symptoms much. I have both temperature changes ( my torso,back, arm is always burning and sweating while my lower leg is always freezing cold and shaking).

      I'm sorry your son is battling this demon! I too am fairly young 34.

    • eva96035
      eva96035 ukila1219

      Posted

      Hello Ukila,

      I know what you mean, when your young it's aweful, and my son is now 16, He had a birthday back in July and he's been battling with the decision on whether he even wants to try driving, He said if something happened and he were to hit somebody else and they died, he said he didn't know if he could live with it. He is a Junior so he's got this year and next year til graduation and he hasn't gotten to live life yet. I tell him all the time that I would take his pain if I could but he said Mom I wouldn't want you to hurt like this. I told him just like any mother would better me than him. I know he's a strong young man that's all I know and I'm so proud of him during the time all this was going on bad, He had gotten a letter from some kind of Honors Society for a fully paid Scholarship and he said Mom, why would they send this to me and I told him it was an honor because school was going really good until this horrible disease hit him. We try to balance school but at first they gave us alot of problems until his doctor wrote a letter to the school board and they changed their story really quick, so we had a meeting and they are basing school with him around what he can do not what they want him to do. Keep me updated honey and I'm gonna head for the bed it's almost 11:00pm here and 5:00am comes early. Take care and God Bless You.

    • andrea11745
      andrea11745 ukila1219

      Posted

      Hi ukila

      I've not had any issues with hair loss and I'm 2 and a bit years into diagnosis but certainly have read lots of literature that speaks of hair and nail changes.. I m sorry you're going through that on top of everything else, you poor thing..

      I was curious about your SCS. I've just (3weeks ago) had mine implanted for my leg and am having my second one for my arm inserted next week. How long have you had them? I'm still having trouble with deciding how much it's working and it being quite positional. I also developed a 'seroma', a pocket of serous fluid built up after surgery at laminectomy site and have a ball like a baseball there which they said could take weeks to months to settle down. It's just mildly uncomfortable.. Do you have different programs on SCS for different positions? I'm relieved to hear you're getting some relief from it as i was skeptical too even after a good trial. My surgeon said 30%just fail after insertion ,even with a good trial, so I'm worried about that and hoping I get good results (sorry ,apparently the seroma is impeding SCS from working quite right, so that's the other thing..)

      Hope you don't mind my questions.

      All the best

      Andrea

    • ukila1219
      ukila1219 andrea11745

      Posted

      Hey Andrea

      I've read different literature about hair loss and changes too. I hate I'm going through that part.

      My SCS is fairly new as well, only about 2 weeks post op. But I have had a great deal of relief so far despite the incision pain and the uncomfortable battery pack. Mine is inserted for my trunkel area and shoulder/arm. The pain in my leg is still there tremendously. I have not had any bad experiences as of yet (pray I don't). I totally understand not being able to distinguish the pain level especially because my CRPS started in my Trunkel area (where the surgery had to take place). But with me paying attention to other little things like being able to put my toes on the ground and being able to write some without it hurting made me know something was working. I have different programs on my device but hate the one with strong vibration ( guess I have to get use to this foreign object). The different programs is for the different things you do. Say for instance you're trying to nap, you'll use the very lite to no vibration program vs using the high vibrations if you try to go for a walk. I also found that I have to use the higher vibration doing flare ups. I do have the issue of the stimulation being so strong that it "take over" my wrist and hand ( I'm very small). The rep said that I didn't have to turn it up so much to receive relief.

      I hope the discomfort you're experiencing leaves soon. The device may be both of our lease on a new life so stay positive as well.

      I hope I was able to help.

      Ukila

    • andrea11745
      andrea11745 ukila1219

      Posted

      Dear Ukila

      ?You did! Thank you for your response, and lets please stay in touch. I think we can private message if we want to. Its so nice to have someone that's so close to where I am with the SCS, and what you said made sense. I will heed your suggestions and look for the little things. As well, I know its not at its optimum right now with the seroma (keep an eye out for that on your incision as mine didn't start til almost 10 days post op and was told by neurosurgeon its not uncommon) As a result i only have the one program on now, which is the high intensity one and i find i have to put it up so high it in itself is uncomfortable. so hoping when i go back in a month i can get new programs and get more benefit from it.

      ?Hang in there and keep me posted on the hair situation..Im sending you good thoughts.

      Andrea

    • ukila1219
      ukila1219 andrea11745

      Posted

      Great Andrea!

      Let's keep in touch.

      I have no idea what a seroma is...if you can message me a pic that will be great!

      Hang in there... We will beat this demon together!

      XOXOXOXO

      UKILA

  • edgy
    edgy ukila1219

    Posted

    Ukila1219, hair pattern change is a symptom of rsd/crps myself I have experienced l have experienced both. 
  • Monkaygirl
    Monkaygirl ukila1219

    Posted

    I grew hair on my hand, a lot! It then fell out over time, very odd. My nails

    Stopped growing, then started again but they have not been same since,

    Very brittle. Hopefully hair loss is a temporary thing.

    Best wishes

  • paula51564
    paula51564 ukila1219

    Posted

    I have had this health issue for a little over three years now. Unfortunately, doctors were not able to diagnose it, so I have been in a living hell and just thought I was crazy. I had a neck injury and the Dr. did a manual stimulation which then caused all the symptoms to start. Originally, it was just this painful burning sensation in my midsection. But then it became like being out into a pot of boiling water every time I sat down. Then, it spread from my thighs to my neck. I began to have pain , redness and swelling in my feet and legs. Then one foot would be red and hot and the other foot cold and white at the same time. I also started tripping and losing bladder control. Last year my hair starting falling out. At first it was just bigger clumps in the shower. Then I noticed big patches of scalp on the front of my head. Over the past year it has also started just breaking off, as if nutrients can't get to the scalp. I have now lost about 75% off my hair and have to use hair fibers and wig pieces. It had been devastating , I always feel like people are staring at my hair and can tell. I can't even wear pants or shorts because if the heat. I have been wearing dresses and skirts for three straight years, itherwise I would pass out . Does your issue get worse with stress?

    • TAH2529
      TAH2529 paula51564

      Posted

      hi! I read your post and was wondering if you are still dealing with hair loss. I am much like you, I loss and never got my hair back. RSD happened for me 2013. Ive veen in remission since 2016, but have issues that drs. arent sure what it is; I know its RSD.

      Hope to hear back.

  • WinterHyena
    WinterHyena ukila1219

    Edited

    Hello!

      I have heard that it happens in some cases.  For me, I started loosing my hair after I started on gabapentin.  My hair came out in clumps and my eyebrows were gone.  My doctor stopped the gabapentin and my hair loss soon stopped as well.  It turns out that several drugs that can help CRPS have some very rough side affects for those sensitive to the medication.  With the medication I have taken, there are 'sister' medications that do the same thing but different side affects.   I hope it is medication for you and not CRPS itself.  I know I was devastated, but my boyfriend reminded me that he loves me for me.  So remember, you are NOT your hair!  You are a wonderful person with or without it. 

    • patti66963
      patti66963 WinterHyena

      Edited

      I too have hair breakage and loss with CRPS. I AM ON THE HIGHEST LEVEL of gabapentin, and this is the first time I’ve heard that it can make you loss your hair. Bless you and thanks for sharing
  • kristin738639
    kristin738639 ukila1219

    Posted

    I have lost hair in clumps daily. Depending on my stress, which is at a 10 along side my pain today.  
    • patti66963
      patti66963 kristin738639

      Posted

      After a back surgery 12 years ago, my DR put me on ocxycontin for pain, and I can’t recall six years of my life; of my four children growing up. It’s an evil drug, although it helped my pain immensely  I  have CRPS...my surgeon said it was common and would dissipate in about six months.   He was lying to me
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