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Struggling with Chronic Illness: A Day in My Life

SJP

749d

I'm having one of those days where everything seems to be acting up. It's been the following disorders acting up today: - Osteoporosis - Malabsorption - Non-Celiac Gluten Sensitivity - Menorrhagia - TMJ - Postural Orthostatic Tachycardia Syndrome - Raynaud's Disease - Neuropathy (autonomic and motor mainly, but some sensory present) - Tendonitis - Chronic Transient Hypoxia and a dash of unknown pain we'll chalk up to fibromyalgia. I just want to be able to take my dog on a long walk, come home, cook dinner, and clean up and not be exhausted. Instead, I can pick one of those things (cooking and cleaning are two separate tasks). The only way I can sometimes do more is following the FODMAP and GERD diets, which leaves me with very, very little, so I'm constantly tired. That, and malabsorption causing hypovitaminosis (D, Calcium, Iron, B Vitamins, Folate). At this point, I'm looking for someone who gets having a trainwreck of a body daily, and/or suggestions for *very* cheap or free pain relief. Open to answering questions, private message/DMs, etc. Just really looking for someone who gets it.

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Lidocaine

Cyanocobalamin

Chronic Generalized pain

Anxiety (Including GAD)

Generalized pain

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Top reply
    • Ashley_W

      748d

      @SJP I have Raynauds and hear intolerance too so it’s definitely a balancing act 🤣 I do the heating pad on low-medium and the gel packs in the fridge not freezer. But I totally get why that doesn’t work for some people! We are still in the process of getting my Botox covered. I’d guess there’s still a copay for seeing the physician, but if you can correlate it with migraine at all it’s easier to get covered as well! They claim I won’t have to pay for anything though 🤷🏼‍♀️ you have to get some documentation from a provider as well as why other meds won’t work. You may have to pay for it once to “prove” that it helps. It’s definitely worth consulting on. I’d say call a plastic surgeon. Pain specialists weren’t much help in this area but I had multiple plastic surgeons willing to help me medically.

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    • Ashley_W

      748d

      Fellow train-wreck here! 🤣 I would second the naturopath and maybe a DO versus an MD if you’re able to see a provider. Also for pain, don’t discount heating pads, different types of ice packs (I like gel ones in the fridge - Amazon has ones that will fit different parts of your body), voltaren for joint pain (over the counter now!), cold therapy/biofreeze/bengay/icy hot for muscle pain, and lidocaine+menthol for nerve pain. All of this can be found at a drug store or online and has been crucial in taking the edge off. I’ve done Botox for TMJ and it’s been helping. Insurance will cover if you can find a provider who knows how to do that well (I do it through a plastic surgeon and they have lots of tips and tricks to get this covered).

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      • SJP

        748d

        @Ashley_W Thanks! I can't do heat/cold because of heat intolerance and Raynaud's Disease. I've heard about voltaren, and want to try it once I have the money for it. How much was Botox with insurance? Was it a copay? I have Medicaid replacement, and it's pretty hard to get anything covered (no pain doctors within 30 miles who are covered, for example).

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        • Ashley_W

          748d

          @SJP I have Raynauds and hear intolerance too so it’s definitely a balancing act 🤣 I do the heating pad on low-medium and the gel packs in the fridge not freezer. But I totally get why that doesn’t work for some people! We are still in the process of getting my Botox covered. I’d guess there’s still a copay for seeing the physician, but if you can correlate it with migraine at all it’s easier to get covered as well! They claim I won’t have to pay for anything though 🤷🏼‍♀️ you have to get some documentation from a provider as well as why other meds won’t work. You may have to pay for it once to “prove” that it helps. It’s definitely worth consulting on. I’d say call a plastic surgeon. Pain specialists weren’t much help in this area but I had multiple plastic surgeons willing to help me medically.

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    • bananaz

      748d

      Hi 👋🏼 so sorry to hear you’re going through all of this. 💕 if you’re open to nonwestern medicine i would recommend seeing a naturopathic doctor. They’ll be more helpful in finding spdcific vitamins and supplements to fill in those gaps (and those deficiencies definitely make our symptoms worse!) they also can work with you on a balanced diet, or maybe a nutritionist? Theyre not cheap but i dont think we can put a price on our health. Feel better 💕

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      • SJP

        748d

        @bananaz Thanks for the suggestions! I did look into this. I saw a nutritionist, but they didn't have any suggestions since I'm super sensitive to so many foods. There are no pain doctors or naturopathic doctors covered by my insurance, or I would go to one. Thank you for your suggestions 😊

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        • Ashley_W

          748d

          @SJP you could try the elemental diet powder. It’s expensive but everything is predigested and it’s specifically made for people who don’t tolerate food. I use it to supplement.

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    • Snowy

      749d

      I don't have nearly that many issues, but even with my shorter list; 1. Depression 2. Anxiety 3. Endometriosis 4. Non-Celiac Gluten Sensitivity 5. Lactose intolerance 6. Soy allergy (+ other associated food issues I haven't pinned down yet) 7. Asthma 8. Dry eyes 9. Migraine ... it sucks. I have days where it feels like it's impossible to get anything right. No matter what I do, it will make something else worse. I've been struggling a lot with it too. I have no wise words, just a lot of empathy and understanding. You're not alone ❤

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      • SJP

        748d

        @Snowy thank you. Yeah, the NCGS seems to cause a lot of my other stuff. I'm still figuring out my food allergies, too, but so far it's a weird list lol.

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