Seeking Chronic Illness/Chronic Pain Friends

CharisSunny
CharisSunny Posts: 276 Member
Fibromyalgia
Undifferentiated Connective Tissue Disorder
Wonky joints
Consistently injured gym rat

I want to be able to share both my whining and my triumphs on my feed without feeling like I'm b!tching at the ether.

That's about it.

Replies

  • canadjineh
    canadjineh Posts: 5,396 Member
    Hi CharisSunny! FM, Celiac disease, and a bit of Osteoarthritis here, lol. I will try a friend request. My profile is public and I read and comment occasionally on my newsfeed. Have you accessed this thread? community.myfitnesspal.com/en/discussion/10104325/medscape-updates-on-clinical-studies-medical-professionals-continuing-ed-site-re-fm#latest
    I post the latest verified scientific studies on FM there from a Medical continuing ed. site (I was a Physical Rehab Assistant before I got ill)
  • melmerritt33
    melmerritt33 Posts: 1,093 Member
    I have Fibro, always open to new friends. I also have my diary open to friends and check in daily, I’ll send a friend request.
  • CharisSunny
    CharisSunny Posts: 276 Member
    Thank you ladies!
    Lovely connecting with you :)
  • CharisSunny
    CharisSunny Posts: 276 Member
    canadjineh wrote: »
    Hi CharisSunny! FM, Celiac disease, and a bit of Osteoarthritis here, lol. I will try a friend request. My profile is public and I read and comment occasionally on my newsfeed. Have you accessed this thread? community.myfitnesspal.com/en/discussion/10104325/medscape-updates-on-clinical-studies-medical-professionals-continuing-ed-site-re-fm#latest
    I post the latest verified scientific studies on FM there from a Medical continuing ed. site (I was a Physical Rehab Assistant before I got ill)

    Thank you! I'll browse as my anxiety allows.
  • PainFreeLady
    PainFreeLady Posts: 1 Member
    Hi CharisSunny.
    I also have Fibromyalgia, hypothyroid, Celiac, and the list goes on and on
    I am just beginning MFP. So many meds.
    I need friends, too. I’ll contact you. Looking forward to talking
  • canadjineh
    canadjineh Posts: 5,396 Member
    Hi @PainFreeLady! You are welcome to friend me too as we have a lot in common, lol. I'm avoiding Hashimoto's or hypothyroidism by supplementing with selenium. It's dropped my antibodies from over 1100 to approx 200 now. Still working on that but at least my other thyroid measurements are all in normal ranges.
  • dalynnrmc
    dalynnrmc Posts: 29 Member
    Hi ladies! I posted an intro thread but thought I’d chime in here. I’m 38 with fibro and diabetes, and have over 100 lbs to lose.

    Really needing some like-minded friends who get it!

    Happy to be here and can’t wait to get to know you all!
  • canadjineh
    canadjineh Posts: 5,396 Member
    Hi @dalynnmc! Will try to friend :) Welcome to MFP!
  • natyyl85510
    natyyl85510 Posts: 36 Member
    Hi feel free to add me as a friend I've already to tried to add a few off you I'm a fellow pain suffer
    I have fibromalagia, osteo arthritis chronic pain syndrome hip dysplasia and a few herniated discs
  • Becka77
    Becka77 Posts: 284 Member
    Hi everybody,

    I have auto-immune disease, fibro, psoriatic arthritis, bulging disks, rolling joints, and scoliosis and several un-diagnosed conditions I'm sure.

    I do not take any medication and am working the holistic approach. I have been eating an anti-inflammatory diet since January that has made a big difference. I have less pain and inflammation and more energy.

    I haven't really started working out again as I am just trying to focus on my health right now and lose weight in the process. I have lost 58lbs from my highest weight so far. I plan to start slowly introducing some light workouts soon.

    Feel free to add me if you like.
  • melmerritt33
    melmerritt33 Posts: 1,093 Member
    Hi Becka, welcome, sounds like you have a lot to deal with but are doing as well as you can. I’m always open to new friends here so I’ll send a friend request.
  • darleenturner
    darleenturner Posts: 79 Member
    Hi i have fybromyalgia, spondylitis, hypermobile EDS, also waiting to get tested for sleep apnonea and sjorgens syndrome. Use food for comfort and really find it hard to fet my weight off but really need to as affecting my health. Also son getting married next year. Would love to have people with similar issues to support each other
  • canadjineh
    canadjineh Posts: 5,396 Member
    Hi @darleenturner, you are welcome to friend me. My niece is getting married in just over 3 weeks, but of course due to Covid-19 it's going to be tiny (25) and outdoors. I've gained a bit of covid weight :s so I'd like to smarten up, get back to my proper eating style, and lose some before the wedding. I tend to use food for comfort too. Mainly the salty stuff....
    chips/crisps, GF crackers and pretzels, along with LOTS of good cheeses.
  • darleenturner
    darleenturner Posts: 79 Member
    I am very much a compulsive eater and never seem to feel full. Not as active as i have been and been eating all the wrong things but determined to get back on track. My downfalls is food in general.

    my son's wedding is next year and he is worried that it may not go ahead due to limit of numbers and a lot of money to spend for a few people. they are currently deciding whether to cancel and just get married in a registry office or change the date till 2022 and get married at a registry office next year and celebrate a year after. It is going to be a hard decision.

    hopefully you can get yours off in time.
  • canadjineh
    canadjineh Posts: 5,396 Member
    I think the wedding will come off OK @darleenturner, as here in BC our active cases are dropping and in the area we live in everyone is being quite good (so far) at complying with masking and distancing recommendations.
    As to getting the weight off in time, that may be a different matter. I am trialing a THC/CBD gummy at bedtime to help with pain and sleep. If it works, getting proper amounts of rest will likely ease my cravings for food outside of mealtimes.
  • canadjineh
    canadjineh Posts: 5,396 Member
    Greetings all, it's been a while since I posted on this thread, working on the frontlines during Covid and caring for my aging parents with Lewy Body Dementia has taken up all the space in my life these days. At least I got my Moderna vaccine at the end of January, so that's helped me feel a bit less anxious. Unfortunately, I haven't been eating my usual low carb healthy fats style and have gained a bit of weight. 15-20 lbs to come off.
    The THC/CBD gummies did work well for pain control and better sleep, but super pricey. I had to switch to a 1:1 oil that I take - 1ml of MCT oil with cannabis distillate equal to .41g of dried cannabis. I take it 1 hr before bed and it works like a charm. My MD gave me a letter (like a prescription) that I can use to get a medical tax credit on my yearly income tax.

    BTW, here's a picture of the bride and groom, my niece and new nephew at the outdoor wedding at the end of Oct/2020. It was broadcast on Zoom to a bunch of family & friends too, who were not able to attend due to Covid protocol. That's why Kelson has his earbud in, lol.
    ktkbi3rtx4om.jpg
  • canadjineh
    canadjineh Posts: 5,396 Member
    It was a surprise snowfall - the first of the season, a bit early but very pretty for a backdrop.
  • melmerritt33
    melmerritt33 Posts: 1,093 Member
    Hi, I’ve been off the forums for a while too, beautiful picture, my belated congratulations to them both.

    I came back to have another stab at the carnivore diet which failed spectacularly again, another energy crash from not eating enough followed by eating carbs! Bad cycle to get into.

    My next plan is to try a ketovore diet, something in between keto and carnivore. The idea being that I have enough plants to keep my brain interested in eating but not so many that my stomach issues come back and not so many that it inflames my Fibro symptoms.,

    Glad to see the MCT cannabis mix is working for you and that you had your vaccine.

    I had my first dose of AstraZeneca last month, can’t wait to get my second dose. Not worried about the blood clot issues, it’s such a small risk and other medications I’ve taken in my life have had higher risks. For me the risk of complications from COVID is far higher.
  • canadjineh
    canadjineh Posts: 5,396 Member
    Hi @melmerritt33 good to see you back on MFP. I'm sure you'll be more comfy with the ketovore diet you are planning, I think a lot of us get into the mindset 'all or nothing' when most of us are likely better served with a tweaked diet plan that works for us specifically. It's just not always easy to find that sweet spot though, lol.

    I've had a bit of extra stress since my husband had the first of 2 surgeries to repair his plumbing innards (remains of an accident when he was a teenager.) This means the second year in a row that his work has been curtailed (workplace accident and surgery last May), and so the accompanying serious drop in revenue is weighing on our minds. He is officially on the list for his second surgery this year (bladder diverticulectomy) to be scheduled sometime between now and Oct. At least we don't have to worry about paying for medical treatment and surgeries here or I'd really be stressed out. Still, it does affect my FM, as we all know.

    Good to hear you've had your vaccine! Hubby is on the registration list and will likely get a call for his vaccine appointment by the end of this month. It's probably going to be Astra-Zeneca too, as he is a male, 63 y.o. we aren't that worried about the side effects. We've had some very interesting (not unexpected) side effects from medications/inoculations we've had for travel before, so it's not like we are freaked out by all of this. It's all a matter of weighing the pros and cons, and since both of us know several people including family who have been very ill (not all seniors in homes with comorbidities either) and a couple of friends that have died, we prefer to take the vaccines.

    Sending out a big wave to everyone else on this thread, hope you are coping these days! give us a hello when you can!
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  • melmerritt33
    melmerritt33 Posts: 1,093 Member
    @canadjineh Im so sorry about your husband, what a nightmare and yes, any stress does make our Fibro worse. Sending wishes for a good result from his surgery and a quick recovery.

    My stomach really suffered after my first foray into plants for my new ketovore plan and after a couple of days back to carnivore have been feeling good again. Even my Fibro pains have been easing off after flaring up after the meals that included plants.

    So I’ve changed my plan already! Now going to try a relaxed carnivore eating plan. I’ll allow myself plants if I really want them but it’s not going in my meal planner or on the weekly shop. If I want them I’ll have to want them enough to go out and get them! My carnivore problem appears to be not wanting to eat so then not eating enough and crashing because I don’t have enough energy. I’m thinking relaxed carnivore allowing plenty of flavourings might be my best option.
  • canadjineh
    canadjineh Posts: 5,396 Member
    Hubby got his text message link for his vaccination appointment today, he's getting the shot on Apr 27th. Looks like it's probably Moderna, as he will be getting it at the big clinic set up in the Recreation Centre, and not at the local pharmacy.
    @melmerritt33 have you tried tracking what kind of veggies you are eating and how they make you feel? Any difference if they are the nightshade family, or maybe brassicas? Maybe you are more sensitive to certain types of veg? Also we noticed a big difference between organic produce and regular. Used to get a numb mouth and metallic taste from regular celery but no effects whatsoever with organic celery. Both were washed well. Both DH and I did blind testing with someone else preparing raw celery to try if we see a difference.
  • melmerritt33
    melmerritt33 Posts: 1,093 Member
    @canadjineh Thats really good news, so glad he’s getting his vaccine!

    I’ve started tracking my food again, I’m keen to get to the root of my different issues especially as I had another IBS flare up yesterday. Looking at my diary and comparing it with my symptom diary it’s clear that both too much and too little or irregular fibre intake is causing my IBS flare ups. So on that side I need to be consistent with my diet. I’m trying to focus on a meat heavy keto style diet to give me a small amount of veg and therefore fibre but not too much. Though I did have potato yesterday as that always sorts my IBS-D attacks out! Hopefully if I’m eating small amounts of other veg regularly enough I won’t need to resort to potato to fix myself!

    I’m going to start trying different veg and keep track of how I feel afterwards both with my stomach and Fibro. I know people seem to have issues with certain types of veg so this should give me some answers.

    Interesting about organic v non organic, I naturally buy organic but am still getting my food delivered rather than shopping for myself so sometimes things will get substituted. Something to bear in mind I guess.
  • canadjineh
    canadjineh Posts: 5,396 Member
    Well, if potato helps, it's not a problem with the nightshade family. If you want to keep your carbs down and still have potato, you might want to investigate 'resistant starch' - short answer, once you cool potato and some other starches down it changes how the starch reacts in your system. https://healthline.com/nutrition/cooling-resistant-starch#TOC_TITLE_HDR_3
  • melmerritt33
    melmerritt33 Posts: 1,093 Member
    Thanks @canadjineh that’s really helpful, that could come in very useful for me. I’m keen to keep carbs low as diabetes is rampant in my family.

    I re-committed to carnivore at the weekend and am regretting it, I’m suffering again. Seems like if I go zero fibre for more than two days it sets me off just as much as eating too much.

    I can’t go on like this. I have a two hour meeting tomorrow that I’m hosting and so cannot be having to rush to the toilet in the middle of it! So I’m having a little potato tonight as I know it seems to work to settle me down and then I’ll give the meat heavy keto style a decent try.

    Somewhere is my sweet spot, I just need to find it!
  • canadjineh
    canadjineh Posts: 5,396 Member
    Hubby ended up getting Pfizer for his vaccine last Tuesday. No side effects except a bit of fatigue and an achy spot at the injection site on his left shoulder. Latest word on the news (BBC if I remember correctly) is that the first dose of Pfizer does NOT protect one from the variants right now, second shot will give the body enough to work with to get full immunity.

    Hopefully you made it through your meeting OK, @melmerritt33. It can definitely take a while to find the right food combo for our own personal circumstances. Keep at 'er, though. Try keeping a food diary and link it with how your body reacts so you can figure out where the problem might be.
  • melmerritt33
    melmerritt33 Posts: 1,093 Member
    That’s brilliant @canadjineh I am really pleased for you and your hubby.

    I made it through my meeting ok thankfully! Since then I’ve been tweaking my diet and over the last week have been almost but not quite carnivore and it seems to finally be working for me. I’ve been keeping my food diary and a separate symptom diary. From that I’ve worked out that dairy seems to be the key to a meat based diet for me. I’ve been eating mostly meat based but having a glass of milk and some cheese almost every day. I’ve not had a single IBS episode all week which is amazing. I’ve also been eating a little honey at the weekends.

    The difference has been huge. I’ve felt so much better. No stomach problems until yesterday. I’ve been sleeping better and waking up more easily, I’ve had more energy and even slightly less pain.

    Yesterday and today I’ve been a bit constipated and had some stomach pains but because of my strict food diary I’ve identified it as the constipation caused by eating too much cheese and the pain by Camembert and cured meats. I suspected these were a problem for me before but wasn’t sure. Now I know. Hard cheeses seem to be ok so I’ll stick with those from now on.

    So my next step is to reduce the cheese a little but not too much. Hopefully right there will be my sweet spot.
  • canadjineh
    canadjineh Posts: 5,396 Member
    :):):)<3 So glad to hear you are feeling better. I've finally gotten things under better control here and have dropped a bit more of the extra Covid poundage. Weighing in at 147 right now...so only 12 lbs to go to get back to my original goal weight from 2013.
  • melmerritt33
    melmerritt33 Posts: 1,093 Member
    That’s brilliant, well done.

    I still have 14 pounds to lose to get to my goal weight and I’m not sure it’s ever going to happen, been stuck here with a few up and back down blips for about two years!

    Went off plan last Friday and Saturday, had some potatoes. Really interesting, my stomach was fine as usual but my pain levels shot up. They’ve only just gone down again after going back to almost carnivore style since Sunday. I didn’t realise until now just how reduced my pain levels had been over the last couple of weeks. Another incentive to keep going.