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Rheumatoid arthritis and Raynaud’s

Hello, I am struggling to stay positive and my mental stability feels like it’s diminishing. I relate so much with your articles regarding mourning the past life. I went from being a mover and a shaker to being nothing but a couch, a bed potato, because of the pain. my journey started with Ray nods, which I had never heard of at the time. I have attached a picture of my fingers just before amputation, and after many hyperbaric chamber treatments. All 10 fingers and two toes were affected, but I only had to have two fingertips and part of my ring finger tip amputated due to necrosis.
My journey has been so overwhelming, seeming to be one major issue after another. I’m only 60 years old and I’ve had several major joint replacements and my spine is severe compression fractures. I’ve lost almost 2 inches and I’m only 4’11”now lol. Auto immune issues are running rampant, including alopecia, and last November I lost all of my hair eyebrows eyelashes included. In the past my hair has grown back quickly and appeared in spots. I combed my hair on November 22 of 2021, and every single piece of hair came out in my brush. Since right around then my mental health has gone downhill and I’m having a hard time staying positive. Now they find nodules in my thyroid, which is something new and I just can’t seem to catch a break. I often wonder why me… Anybody else feel the same way? This was after many hours in a hyperbaric chamber, and it was just before amputation.

  1. Oh, , my heart goes out to you! No wonder you are feeling pretty discouraged -- that is a LOT to go through! How have your fingers been since the amputation process? Have you found any comfortable hats or scarves to wear that you feel confident in? I know alopecia can be an especially cruel condition that many in the general public do not understand.

    Do you have any kind of support system to be there for you? Also, do you have a therapist to talk to? I am a big fan of talk therapy, as it can be a great way to process your emotions and problem solve in a healthy fashion.

    Also, have your doctors told you what is causing your thyroid nodules and are they treatable? Sorry for asking all those questions right off the bat.

    I think it's pretty normal to struggle with staying positive in the midst of so much physical pain and turmoil. Your mental strength is naturally going to ebb and flow. But I bet you know that and you are more concerned about the overall downward trend of your outlook? I think that shows a lot of emotional maturity and intelligence to recognize this shift and to want to address it. And it's also okay to just say, "You know what? This whole thing just sucks and I don't like it at all."

    I know many of our community members can relate to feeling pretty emotionally worn down by the toll of RA and other long term health issues. It's darned hard to stay positive when you are hurting and you feel like you get some new health problem thrown at you every other year. You are not alone in this!

    Do you have any regular self care practices that help at all when you're feeling down (ie -- hot baths, binge watching your favorite show, calling up a friend to chat, reading a good book, watching the rain fall, etc)? I know that's not a long term fix for serious mental health concerns, but taking regular time to take care of ourselves can really help.

    Please know we empathize with you and so very many of our members can understand what you are feeling. I am so glad you took the time to share a part of your story with the community. I hope you get plenty of feedback from other community members that connected to your post.

    May you have a good start to this week!

    Best, Erin, Team Member.

    1. Yes every time I get a new diagnose I ask myself that dreaded question, no lying here! gave some great advice, counseling really did help and still does help me. Support of any and all family and friends even better. For those that don't, I only hope they never have to go through something like this in their lives.

      Even though I have not been through what you are dealing with I empathize with you. It must be hard both physically and mentally. May I add a couple suggestions beyond what Erin did? Eyebrows, have you ever heard of eyebrow tattooing? Check out the internet, it could be an option? They look awesome! Hair, there is scarfs and hats but wigs too or a short cut? If you live in the USA have your doc write out a prescription for you if they will, why? Two reasons, one is so you maybe honestly call your insurance company, stating the doctor gave you a prescription for ***** and you wanted to see if they would help cover that? Yip always ask, you may never know what their answer will be. Example: I need compression socks got that prescription, called my insurance and they consider these socks as "Durable Equipment", I know right? Anyway they are paying 70% of the cost, they are not cheap and do were out. The 2nd reason for the paper prescription in the USA is Income Taxes. If a person can file "long form" and right off their medical expenses, these ( whatever you choose to do) are now medical expenses because of that prescription. No guarantees of course, you would need to chat with a tax person because its all in the qualification of that long form and standard deduction thing, but it's something to check and keep your mind going on a positive path. Now if that don't work out, then maybe checking with a Cancer Center or Chemo Center, they might be able to assist you in finding a nice place to get what you are needing or know of an organization that might be helpful. Last thing, never under estimate thrift or resale stores, my favorites are St. Vincent DePaul and the smaller ones ran by church or organization locally, the people are usually very helpful not only with finding you something in their store, but usually willing to inform you if a wanted item comes in or someone there might know of other organizations that could lend a helping hand. Well is all the thoughts I have for the night.
      My heart and hugs go out to you, wishing you the best, here if you need

      1. My Mother had advanced Raynaud's and her fingers had not gotten as bad as yours and they gave her a nitroglycerine cream to put on the tips of her fingers to draw the blood to them to keep from losing them. Whoever was putting it on her fingers had to wear gloves to make sure we didn't get it on our hands, I accidently did once and you could feel the burn of how it worked on her fingers to keep them alive. I'm sorry you didn't hear of something like this before your fingers got to where they are in that photo. My son had alopecia many years ago, autoimmune diseases run in all of my family. I took my son to a dermatologist and he had shots he put in the places where the hair had feel out of his head, his beard and his chest. He also talked to my son about controlling his anxiety. All of the hair grew back and I'm happy to say it's been 15 years now. Finding all of the answers are hard. I also have Raynauds, Rheu Arthritis and Fibromyalgia along with chronic pain in my back and legs, neck and shoulders so I understand how you are feeling. I too was a mover and now I feel more like a turtle but I am determined to keep moving to live my life as best as I can. I will pray that you get some answers so that you feel better.

        Best Wishes


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