• Katooshie
    748
    Auto immune disorders are often linked to hair loss. I have 2 auto immune diseases: sarcoidosis and uveitis. Anyone else here have auto immune issues?
  • buckeyegal1963
    470
    I have crps (complex regional pain syndrome) in my left leg. The condition is your body overcompensating for an injury, causing nerve pain, swelling, color change of the skin, skin temperature, and decreased mobility. I won't go into the whole story, but it took me months of physical therapy to be able to walk half way normally again. This was in 2018, I never regained 100% range of motion, but most of it, and the nerve damage will always be there. The burning, tingling sensation in my leg is always there, one in awhile it will flare up and be painful, but I've learned to live with it.

    Also have fibromyalgia, so just about my whole body feels like my leg. This was diagnosed in 2012...I've always hair on the thin side, so not sure I can blame my bad hair on my disorders.
  • PinkEvie
    215
    Never heard of those two, they sound awful.

    I have fibromyalgia, under active thyriod and crohns disease, so feel awful most days.
  • BeatA
    511
    Alopecia areata and totalis and universalis are Auto immune diseases so yeah all
    Of us who wear wigs for that reason are in that category.
  • Shar W
    635
    Sjogrens
    Hashimotos Thyrioditis
    Fibromyalgia
  • HeatherE
    105
    Hypothyroid, fibromyalgia.
  • KellyA
    221
    Lymphatic colitis and internal cystitis . Some medical people have tried giving me the dignosis of fibromyalgia but I am not stepping into agreement with it right now.
  • Toni Warner
    25
    I have had Crohns for a long time it is an auto immune disease, the doctor's think that is why I lost my hair.
  • Toni Warner
    25
    I'm sorry that you have Crohn's it can really be debilitating.
  • Katooshie
    748
    crohns is having a lot of successful treatment with low dose naltrexone. You might want to google it and talk to your doctor about it!
  • Misty
    228
    Alopecia
    Hashimotos
  • PinkEvie
    215
    Thanks for the advice, next time I go, I will mention it. I am taking up to 6 imodium most days and also colofac, to help with the attacks and to actually eat something, I can't eat anything fresh, like salads, fruit, vegs, I drink something call Ensure, which I get from the doctors, also a vitamin that I have to keep in the fridge and use up with in 20 days.

    When I had my car accident, I broke most bones in my entire body and that is down to malnutrition due to the crohns, so now I am a walking metal detectar and set the alarms off in all the shops, so every one knows I am either coming in or leaving, some shops just look over and see me and say to just go or come, so wearing a wig or hair piece is a piece of cake and I love the diversity of choice. xx
  • Moonlitnight
    1.3k
    Gosh. That is so much to put up with . You are a strong and wonderful person and I admire you very much. I absolutely loathe Ensure, by the way. They should make a savoury version. Like V8.
  • Al O'pecia
    61
    Is crps the same as what we used to call reflex sympathetic dystropy (RSD)? It sounds very similar and not fun.

    I have been worked up the kazoo, but no others (apart from alopecia totalis) has turned up. I'm not complaining, and agree that wearing a wig is a mere nuisance compared with what some of you ladies are suffering through.

    Agree about the Ensure, but V8 flavored?? LOL!
  • Moonlitnight
    1.3k
    Cheese then. Anything but the sickly sweet flavour!
  • Al O'pecia
    61
    :rofl: :rofl: :rofl: Ew, I think that's worse. Hopefully I will never be forced to drink it. When I was a kid, I didn't want to eat breakfast so my mother would make me drink Metrecal which was a similar thing back then; I think that ruined me for nutrition drinks of that sort.
  • buckeyegal1963
    470
    Yes, they're the same condition, and no, not fun at all!

    The legs in this photo are not my legs, but they're how my leg and foot looked, only my left leg was a little more swollen than the left leg in the pic. I had to use crutches, then a cane, for about 10 months. I still have pain. In 2012 I started getting pain in both shoulders and upper back. I asked the doc if was the cprs spreading to other parts of my body, but he said he didn't think so....had a battery of tests and he came up with fibromyalgia.
    cpkx9znw8vgu16yq.jpg
  • Al O'pecia
    61
    Horrifying. There is no worse feeling than your body doing weird s#!t that you feel no control over. I'm so sorry you are fighting that. There is so much that isn't understood. So many "diagnoses" that are not really a diagnosis, just a description of what's happening. Like alopecia for instance. It just means your hair is falling out, it doesn't say why, and even autoimmune is just a description of the process, it still doesn't say why. I admire so much your resolve to press on and not let it define you. :hearts:
  • Misty
    228
    This would have been absolutely scary. Sending love and hugs. :hearts:
  • buckeyegal1963
    470
    Thank you, some days are worse than others, but I haven't had a pain free day since 2008. It was a really dark time for me, it didn't think I'd ever be able to walk normally again, months of physical therapy. I'd be hobbling into the physical therapy center and 80 yr olds were flying by me I was so slow. I'm just grateful that I got most of my mobility back, I can't really run or do lunging motions, but that's ok. I can't sit for too long with my legs in a bent position, that causes more pain for me. Some days are worse than others, but at the very least there is always the burning, tingling nerve thing, you know how when your leg has fallen asleep, for me that's a 24/7 constant.

    Thanks Misty, initially I thought it was a blood clot or blocked artery, which was also the concern of the nurses and docs at the ER, my leg was so cold and purplish.
  • Moonlitnight
    1.3k
    This is so horrible. I wish I had a magic wand! :kiss:
  • Misty
    228
    Again, I am just so sorry to hear this. It would have been such a crazy scary thing to have happen, and then to worry about why it occurred as well. So happy to hear you have got most of your mobility back - awesome result! Do they think you will still have further improvement?
    I know the neuralgia well, for me it is a leftover from chemo. It runs from top point of my jaw, across upper lip, and up again towards my weak eye.Also in fingers and toes. I find if I am tired, or it is cold, they are two triggers for me. Time has helped to reduce the severity and length. I really wish there is hope that yours will reduce over time. Sending hugs :hearts:
  • buckeyegal1963
    470
    Yeah me too, but it is what it is, no magic bullet or pill or surgery for most of these autioimmune diseases.

    Unfortunately no, it's not likely to improve. Like I said, I'm just happy I regained mobility, there was a time I didn't think that I would, it took so long. The neuralgia is a constant, it doesn't go away, I'm sorry that you experience it as well. :hearts:
  • Misty
    228
    I wish I had a magic wand! :kiss:Moonlitnight
    I wish too!
  • animallover
    89
    This so sad that so many of you suffer from such horrible auto immune illnesses. I am so sorry. You are all so brave and so strong.
    I have auto immune thyroiditis, I guess, Hashimoto's , my doc has called it both. I also build up a toxic reaction to T4 meds so have to have both T4 and T3 and have blood work a lot to keep them both in check with each other. That is one reason why I have such horrible hair loss, up/down, up/down......
    Being checked for Lupus, fibro and and such soon. I ache all over, have terrible arthritis starting everywhere. There are many auto immune illnesses in my family including psoriasis, vitiligo. Type I diabetes, etc....
    I was very insulted the other day when listening to a medical talk show, the speaker said that auto immune diseases can be completely eliminated....if the person wanted them to be...by changing diet and exercising. Ummm, excuse me sir,, I have always eaten a healthy diet, I've always been a walker, I don't smoke and I drink a social amount of alcohol. How insulting.
  • Shar W
    635
    That guy is full of crap!
  • PinkEvie
    215
    What a load of rubbish, if it was that easy to get rid of auto immune diseases, then they would be gone, you are some of the most determined and positive women and suffer so much in the name of auto immune, I send lots of virtual hugs to all of you. xxx :kiss: :hearts:
  • dc21
    217
    There are a lot of snake oil salesman out there - and an equal number of desperate people who follow them unfortunately. Autoimmune, hairloss, cancer, etc are just some of the areas where people are preyed upon with quackery.
  • PinkEvie
    215
    What has happened to your avatar photo? It has gone off my screen??
  • PinkEvie
    215
    Sorry dc21, ignore above comment, was mixing you up with our lovely drift who has a photo of herself as an avatar.

    It is getting late here in Wales, so will say good night and speak to you all hopefully tomorrow. Sleep tight. xx :hearts:
  • Katooshie
    748
    me too! Healthiest lifestyle and diet and still auto immune disorders. From my research i am believing there is a genetic predispoition to low endorphin production which causes most chronic illness. Low dose naltrexone tricks the body into producing 3x more endorphins and causes cells to create more endorphin receptors praying this works for me! Will keep you posted!
  • DeniseJH
    62
    Hypothyroid - I was told my hypothyroid was most likely due to auto-immune, even after I tested negative for Hashi's (only tested once, though). Endo also said that most auto-immune are genetic.
  • Katooshie
    748
    i definitely think there is either a genetic component and/or infectious nature to all chronic illness including auto immune. People with cancer and auto immune are shown to create about 1/4 the normal level of endorphins...which are the building blocks of killer T immune cells. Low endorphins are likely also the cause of deoression...anxiety...and mental illness. What causes low endorphins? Prolonged periods of stress...grief...anger...fear...all repress endorphin production. People with low endorphins may also be born with a predisposition to fewer endorphin receptors on their cells. Research is ongoing.
  • Moonlitnight
    1.3k
    This is just fascinating, Kat. I've never had to write on or research the etiology of autoimmune diseases. I am a little concerned personally about the "prolonged period of stress" part. When I had what appeared to be insurmountable problems and had lost my B, I wonder if I was stressed. I literally just gave it all up for the Greater Power to deal with and put my complete trust in that process and it worked. However, here I am, two-and-a-half years on from the loss, with virtually no hair.

    On another note, I feel my digestion is not as good as it was as my tummy protrudes a little. Not much, but it's different. I get almost daily migraines and they are more frequent. Researchers now think that many migraines are a result of something out of balance in the gut, and are suggesting they have an autoimmune origin. xo
  • queenb1127
    2
    I have hypothyroidism and Hashimotos. I was diagnosed with Tellegen Effluvium but don’t believe that diagnosis at all. I really think docs will tell you that if they don’t have another diagnosis.
  • Mimi
    2
    Uveitis and Vitiligo have changed my life. Had a fabulous lake home and decided to move back to the city since I couldn't enjoy the outdoors any more. Adding to this, started wearing wigs full time in 2008. I find myself indoors all the time. My family is always looking out for me when I do go out.which is a blessing. My go to wig is Fascination by RW. Have not found another that works for me.
  • Moonlitnight
    1.3k
    Hello Mimi and welcome. So glad you have posted so that we can say hi :) You look lovely in your profile pic—very natural. You'll find lots of support on this thread, I'm sure. An uncle of mine had vitiligo back in the day, and I know he suffered a lot because of it.
  • Moonlitnight
    1.3k
    I believe that too. My hair started falling in large amounts recently. The only change I made was adding a very small amount of weak estriol to my face cream. My doctor told me my hair was looking good, so I explained it was a wig and that my hair was falling very badly. So of course it was telogen effluvium, "probably chronic." But I believe it was the estriol as I could never take bc pills due to massive fall. That was traced to the estrogen content.
  • Mimi
    2
    Thank you for the welcome and find words. I am very fortunate (if you can call it that)to have lost ALL pigment and people just think of me as being very white. The word Sun Exposure is not in my vocabulary any longer. Wigs have helped me throughout the years. Just wish I could find another style.
  • animallover
    89
    Hello Mimi, welcome, you have found a fabulour group of people here. My nephew has vitiligo as well. He lives in a southern state but stays indoors a lot. So sorry about have to leave your lake home, I grew up on a lake and loved it. Wishing you the best.
  • animallover
    89
    I have to take estradiol as I had surgical menopause years ago and without my precious ovaries I produce no estrogen amount worth mentioning. Actually I think the whole balance of my hormones have been off for so long that combined with thyroid disease my hair is doomed. But I need to replace my estrogen so I don't get all the other ill effects of having none,. ie: hot flashes, dry skin, brain fog, etc..... so hair loss it is...........I also have to take a small amount of testosterone to keep some muscle mass, even though I have lost so much. Sometimes it seems all hopeless, others it seems OK. Ah, life.
  • Moonlitnight
    1.3k
    No sun exposure must be a big challenge. You should start a thread called "Find me a new style" or something like this and watch for all the help you'll get from our lovely bunch of ladies and guys. They are very smart and experienced and LOVE to help!
  • Moonlitnight
    1.3k
    Oh my. I have so many hormone issues as well. Basically, I have none but not due to surgical menopause, which must be a huge pain. Sometimes I tell myself that, if I just let myself go bald, I could get some of my youthful spirit and appearance back as I really am noticing weakness in my muscles and a not-so-good tone to my skin. Recently, I put on five pounds that won't come off despite a lot of walking. Testosterone makes my hair fall and so does estrogen. I take progesterone, but that's about it. Hugs!
  • Ali
    59
    • I have Rheumatoid Arthritis which is an auto immune disease. Not only does RA often cause hair loss, the main drug that is prescribed to patients to stabilize the disease (Methotrexate- often used in cancer treatment) can also cause hair loss. So double whammy in my case and within a couple couple years from diagnosis, Here I am wearing wigs. I’m just so grateful for realistic looking wigs!
  • Moonlitnight
    1.3k
    RA can be very painful too. It's interesting how many people here have AI diseases.
  • Katooshie
    748
    You might want to look into low dose naltrexone. I am reading a book about it and the science behind how it works is very sound. I've read it is being used to treat many different auto immune diseases, including RA. I am on it now for a week, and I definitely feel the difference in my mood and levels of pain. I had to take pain killers daily to deal with sarcoidosis that affects my right side and causes tremendous pain. Thanks to low dose naltrexone, I noticed yesterday, WOW...my body doesn't hurt! Loving it! :)
  • animallover
    89
    That is one that my PCP is sending me to rheumatologist for....I have a high RH Factor along with a few borderline b/w results. I have tremendous/s pain/stiffness in joints and have a very hard time sleeping at night, just can't get comfortable that along with fatique. Of course, my thyroid also causes fatique as well.
    I;ve been googling low dose naltrexone since you mentioned it. Very interesting. I wonder how hard it is to get a PCP to rx it? Seems all they want to rx is gabapentin, which I don't want to take. I have to admit, I would be tempted to try med. marijuana to help with pain if it worked and if I could use it, but I can't in my line of work I would just like to get some quality sleep once in a while. So happy that you have found some relief for your pain!!
  • Ali
    59
    Thank you dear, I will look into it. So appreciate the advise. And super thrilled that you are getting relief from pain! How nice to be able to say that! :)
  • Ali
    59
    good luck! No fun to be in pain and unable to get adequate sleep. I’ve unfortunately been there too and at this point I’m taking 600 mg of ibuprofen daily (with food) to reduce pain but it doesn’t eliminate it. If I don’t I feel horrible! But my doctor needs to check on my blood counts every three months to be sure I’m not harming my liver, etc. I also take Tizanidin a muscle relaxer on especially bad nights where I can’t sleep. It helps without any woozy side effects. According to my Rhuematologist the Methotrexate will maintain the disease, not get rid of it although remission is a possibility. Again, good luck to you.
  • Katooshie
    748
    i went to a naturopath who prescribed it for me. She is treating 12 patients with ldn and 8 of them are doing extremely well. I like those odds since there is no other treatment for my diseases. I am at 1 week and notice 3 things: no pain, elevated mood, and better sleep! Its already worth it!
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