Severe Fibromyalgia, Autoimmune Disorder, Chronic Fatigue Syndrome & Pernicious Anemia
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Sitnprettyndasun
Posts: 10 Member
Hi! My Doctor has ordered that I loose 30 lbs! I also want to for myself, my children & my husband! Currently I HATE the way I look, but more importantly than my vanity, my health is n even MORE jeopardy than the year b4! Due to my illnesses, n lack of willpower- it is horribly difficult n terribly painful to stay on track! If u understand or btr yet share a or some - heaven help u if ALL of these problems, plz contact me! Together hopefully we can conquer r problems! I desperately NEED to loose this weight n I know
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Replies
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Ask your Doctor for a referral to a Registered Dietician who works with people dealing with chronic illnesses. You will want to make sure you eat foods that will help you fight CFS and anemia as well as the other issues, but at an appropriate calorie level, and a RD is probably the best person to help you with that.
Also ask for a referral for some physical therapy. You can lose the weight without any exercise, but light to moderate activity can actually do a lot to alleviate many conditions. The best place to start is, again, with someone who specializes in helping people with existing conditions that may limit what they do, so physical therapy is a great resource. You can also try light walking, swimming, or water aerobics (often the buoyancy of water can help relieve pressure on joints while you exercise).0 -
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!0 -
I have fibromyalgia and can understand what you are going through. I agree with talking to a RD. They can help you with foods that can help with iron and anti-inflammatory properties. So far I have lost 32lbs in 142 days. Mostly by diet. I do try to get some exercise in but don't usually do over 30 mins at a time unless it is very low impact. You can do it. Friend me if you want to.0
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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
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I strongly recommend "The Divided Mind" by Dr Sarno for anyone with fibromalgia. I also recommend "pain free for life" by Dr. Brady. These books are so important. Life changers.0
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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!0 -
Though none of my chronic conditions were not that painful, this course taught me to troubleshoot my own problems and gradually change my life around, including my eating.
http://patienteducation.stanford.edu/programs/cdsmp.html0 -
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?0 -
Sitnprettyndasun wrote: »Hi! My Doctor has ordered that I loose 30 lbs! I also want to for myself, my children & my husband! Currently I HATE the way I look, but more importantly than my vanity, my health is n even MORE jeopardy than the year b4! Due to my illnesses, n lack of willpower- it is horribly difficult n terribly painful to stay on track! If u understand or btr yet share a or some - heaven help u if ALL of these problems, plz contact me! Together hopefully we can conquer r problems! I desperately NEED to loose this weight n I know
I am hypothyroid, have PCOS, suffer from a rare allergy causing me to break in hives when I am hot (includes my own sweat), recently have been diagnosed with arthritis, and also recently diagnosed with autoimmune gastritis resulting in B12 deficiency, which the dr told me could lead to pernicious anemia in the future.
So, I feel your pain of having to juggle several health issues. There are months where I feel all I do is run between dr appointments.
I would expect that for you the most disabling symptom would be fibromyalgia? I have no personal experience but I have a relative suffering from this, and his main fitness routine involves strength training. But he is following a program designed by a physical therapist for his needs, there are several restrictions compared to the usual routines.0 -
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-patch0
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I had a friend who said sge cured her fibro myalgia by doing exercises in a heated pool above 88 degrees. And eating a low inflammatory diet.0
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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...:)0 -
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!
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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
Oh honey, I am so sorry you have FND! I also have this and CFS
It's a battle to just exist at times! I only got diagnosed last year but I have had it 11 years. I used to be 70kg now I am 90 due to meds, I did lose 15kg over 3 years but the meds are new and that weight was gained again. It really doesn't help that chronic illness slows your metabolism. I do find that nondenatured whey protein helps, as it's easier to absorb. I use Metabolic Whey. I recently got a concussion so am bedridden but when I am ok I exercise about 2 times a week. If I do more I relapse. It's more than I used to be able to do though! Walking in a supermarket used to tire me. Anyway, friend me if you like, it would be nice to have a FND person in my life! 0 -
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!0 -
Hi! I have multiple sclerosis and have always dealt with low iron. Thankfully,if I take oral iron for a few weeks it comes back up. My mom has fibromyalgia. She walks every day. It's the only exercise that doesn't cause her to be in more pain the next day. She gets so frustrated because she loves different forms of exercise. She also feels better when she cuts out sweets. Best of luck to you! Getting in shape is hard enough without adding these extra challenges. I will send you a friend request.1
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