Severe Fibromyalgia, Autoimmune Disorder, Chronic Fatigue Syndrome & Pernicious Anemia

I have fibromyalgia and functional neurological disorder, I personally find that exercising helps manage my pain levels, and although I have chronic fatigue exercise does help give me abit more energy.

Tbh it wasn't easy at the start to exercise if I ran at all I was in agony for days, but I slowly built it up, making sure to listen To my body for any niggles. But the pain lessed abit when I exercise and I completed sprint triathlons and all since being diagnosed. I still suffer daily with pain especially in my neck and legs but have managed to get some of medication decreased.

Although I do struggle with my weight since being diagnosed, Ive always been around 60kgs but now I'm 78kgs and eventhough I exercise I can't get the weight to really budge, I've read up on it and apparently people with fibromyalgia usually have slower metabolisms, so gonna get my doctor to send me to a dietician and see what they suggest. it's not easy but we can do it

I have Pernicious Anemia, and I have to take a shot of B12 a month, because PA means you can't digest it. If you aren't on a shot, make sure to ask your doctor why. There are "food-bound" forms of the disease, so there may be a good reason, but just make sure your levels aren't still low and that whatever you are given works. I have permanent nerve damage because I wasn't diagnosed in good time, so PA is no joke when not controlled properly!

I have several other health problems, but they are all either under great control or just mechanical and painful. I am on pain meds and do what I can to help make the pain better while still doing enough to stay healthy. It's certainly painful, but you can do it! You get more and more used to the pain levels over the years, so that's good in its own way, I think

Don't discount gentle exercise, either. It may not be cardio or burn many calories, but if something gets things moving and stretched and the blood flowing, it helps healing and health.

And my favorite exercising for not causing many flare-ups is really in the water, so try to find a heated pool. I went to my latest physical therapy place precisely because of their pool. There is also a Y in town that has a heated one, so definitely call all around. Good luck!

I was wondering if poor absorption is the cause of pernicious anemia, if topical delivery of vitamins and minerals might help? Here's a vitamin patch I intend to try. https://barimart.com/patchmd-multi-vitamin-patch

Sitnprettyndasun wrote: »

All great ideas! I do try to walk arnd my house or arnd my bk yard- as I'm afraid to lv my house incase I hv a severe flair up n cldnt get bk. I also try treading water, n leg lifts etc underwater when weather n water temp of my pool permits. ( I also hv a problem w fevers a LOT, I spent 2 yrs going to specialists that finally just gave up n said cm c us if it gets even worse...SOOooo, even tho pool temp might b 88 degrees- I can't get n cuz due to my fvr it feels absolutely freezing to me! )

The dietitian sounds perfect cuz I also hv a CRAZY amt of food allergies! It wld b great to get some ideas of what to eat n some recipes. Do u know if there is one n these forums that might b willing to help? I think I'll do a search.

I am currently cn a physical therapist for a spinal injury so I will pick his brain at my next visit.

THXS again!!! Plz feel free to friend me, I wld love to hv supportive, optimistic n compassionate pals!

Cutting out all those vowels and consonants probably helps...:)

Sitnprettyndasun wrote: »

cafeaulait7 wrote: »

I have Pernicious Anemia, and I have to take a shot of B12 a month, because PA means you can't digest it. If you aren't on a shot, make sure to ask your doctor why. There are "food-bound" forms of the disease, so there may be a good reason, but just make sure your levels aren't still low and that whatever you are given works. I have permanent nerve damage because I wasn't diagnosed in good time, so PA is no joke when not controlled properly!

I have several other health problems, but they are all either under great control or just mechanical and painful. I am on pain meds and do what I can to help make the pain better while still doing enough to stay healthy. It's certainly painful, but you can do it! You get more and more used to the pain levels over the years, so that's good in its own way, I think

Don't discount gentle exercise, either. It may not be cardio or burn many calories, but if something gets things moving and stretched and the blood flowing, it helps healing and health.

And my favorite exercising for not causing many flare-ups is really in the water, so try to find a heated pool. I went to my latest physical therapy place precisely because of their pool. There is also a Y in town that has a heated one, so definitely call all around. Good luck!

cafeaulait7 wrote: »

I have Pernicious Anemia, and I have to take a shot of B12 a month, because PA means you can't digest it. If you aren't on a shot, make sure to ask your doctor why. There are "food-bound" forms of the disease, so there may be a good reason, but just make sure your levels aren't still low and that whatever you are given works. I have permanent nerve damage because I wasn't diagnosed in good time, so PA is no joke when not controlled properly!

I have several other health problems, but they are all either under great control or just mechanical and painful. I am on pain meds and do what I can to help make the pain better while still doing enough to stay healthy. It's certainly painful, but you can do it! You get more and more used to the pain levels over the years, so that's good in its own way, I think

Don't discount gentle exercise, either. It may not be cardio or burn many calories, but if something gets things moving and stretched and the blood flowing, it helps healing and health.

And my favorite exercising for not causing many flare-ups is really in the water, so try to find a heated pool. I went to my latest physical therapy place precisely because of their pool. There is also a Y in town that has a heated one, so definitely call all around. Good luck!

I truly HATE to hear that u hv pernicious anemia, but yet I am SO excited!!!! U r the first person I've known to even know WHAT it is let alone hv it also! I sent u a friend request, I hope u accept! It wld be WONDERFUL to b able to talk to someone who understands!!!!! I hv several other problems cuz of PA, I get blood work yearly to make sure no important organs r shutting down, n keep a close eye on my problem areas. The shots Def help, but it is what it is... I find the pool helps a lot!!! I live n da dessert so I'm able to swim 3/4 of the year. I hv a heater to it as long as I hv xtra $ to heat it. I've bn wanting to get a hot tub for years, but hvn't talked hubby into it yet lol. What do u feel is ur greatest challenge, n how do u conquer it?

Definitely my biggest problem was from losing a ton of muscle (down to 85 lbs) and having nerve damage from having a doctor not be able to figure out what was going on I gained so much muscle in the several months following my first shots it was unreal (backpacking in Europe!) And most of the nerve symptoms went away, thank God, because I had so many. But several years later, after I felt so great, really, the leftover weakness/instability in my neck is probably what caused my chronic pain problem (neck and upper back). That really does suck!

It's taken over a decade for me to figure out what I can do and not do for my neck/back. It's pretty much conquered that way I do PT exercises (and rounds of PT here and there) and also a lot of isolation weight lifting for muscles that don't have problems. That actually works really well! Avoidance of a lot of movements is really key, too. I spread out tasks over time to get things done, and that keeps the flare-ups from completely flattening me. It's rough, but it feels a lot better over time, learning how your body reacts and also simply getting used to pain you never thought you'd get at all used to. And the bottles of meds help a lot, too, of course!

I have similar issues.

Exercise is absolutely the BEST thing that you can do for fibro. Start small with things like walking and swimming and develop an everyday habit of moving.

Tracking is your friend--it's a great way to understand what the limits are for your body. For example, I know that 2 hours per day of intense exercise is my absolute limit where fibro is concerned. I've also been able to figure out exactly what my triggers are.

Good luck!