Other MFPers with health issues?
Replies
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I developed a rare autoimmune disorder at age fourteen (microscopic polyangiitis) that destroyed both my kidneys- I went from being a healthy, nerdy high school freshman to being critically ill in the space of about eight weeks. I'm extremely fortunate in that it hasn't recurred since then. I received a successful kidney transplant at age 16 from my mother (<3 u, mom!) and since then I've been able to live my life fairly unrestricted- I went to college out of state, work full-time, live on my own, am looking at master's degrees. The medications and treatments do have side effects, notably a substantially increased risk of cancer, and post-transplant recipients are at higher risk for cardiovascular disease. I have to take medication for hypertension, and reducing my CVD risk profile is one major reason I joined MFP.
The other big thing I deal with is chronic depression. I've been on Paxil for years and years and I've found myself sobbing on therapists' couches many times. (Fortunately they're all used to being sobbed on.) It's not a big issue right now, but I always kind of know it's back there, you know?
Your mom is a rock star, seriously. Rock. Star. I'm really glad to hear that you've been able to lead a healthy happy life since your transplant! And good for you taking preemptive measures to ensure your future is healthy too!0 -
I have fibromyalgia (FM) too. Yes, very much a nuisance, very hard to incorporate with other aspects of your life especially when you are tying to get back into shape with exercise and diet. I also have chronic pain from a fused arthritic ankle and bursitis growing and spreading around my body.
I have just joined today and I noticed you on site looking for support. Do you want me to say "we can do this together" or "maybe we can do this diet together and it might work with the FM" I also run a FM group and gaining weight is a big problem.
ok, so .what kind of exercise are you able to do, or have you not figured that out yet? check in with you later and i'll let you know if I have picked up some earthshattering knowledge for us to charge us on the way to losing weight.
Yeah, Fibro makes things interesting!
I figured having a thread like this would allow me and anyone else interested to make new friends who could be more understanding than those without ongoing health issues. MFP is about support after all, right?
I'm excited at how well the thread has gone thus far, hopefully it's a trend that will continue!
As for exercising, I do what feels good for me that day. Some days that's doing nothing or just doing 15 mins old light stretching/yoga. Other days (like today) I am able to push myself and I go for it. I usually hurt b the evening those days (I do right now), but even so it's worth it to me. Every time I get off the couch and do something I'm helping to build up my strength and endurance which will make what I am capable of in the future that much bigger.
Do you have a link to the group you run? I'm interested in it. 0 -
Weird, I also have hypermobility and used to have really bad IBS, although it is mostly under control now. I also have asthma, allergies, and pretty bad back issues that do put me out of commission semi-often and just bother me the rest of the time. I don't really think of myself as someone with health problems though...I guess that comes with being an optimist - I know it could be a lot worse (especially after reading through this thread!) I feel for all of you and kudos for doing what you can to work through your issues and towards your goals!
That's awesome! I try to be positive about my health as much as I possibly can. I know a lot of the "I can't"s start in a persons mind and those thoughts can be pretty powerful.
High five to you as we'll for pursuing your goals!0 -
Hi,
I have Stargardt's Macular Dystrophy ... It's a genetic eye disorder that effects the central vision ... I'm now legally blind ... no biggie though, I can still see enough to run ... I'm also hypothyroid, but that's totally unrelated, and controlled by medication, where as the Stargardt's has no treatment or cure (Yet ... Stem cell stuff is on the horizon, though) ...0 -
I have hypermobility in my joints - it is worse in my knees (one of which has already been operated on). Because of this I can only do light exercise, no running, jumping pivoting etc I can walk and swim mainly.
I also have SVT which is a heart issue which causes heart palpitations at random and PCOS. As well as minor issues such as insomnia and severe headaches that are boarder line migranes.
All these things combined make it hard for me to exercise, focus on anything long term and also hard to have the self control to stick to a diet.
I am trying very hard and no matter how many times I may falter I am determined to at least be healthier and somewhat fitter if not skinny!
I am open to new friends as without people on here keeping an eye on you it is so easy to loose track of yourself.0 -
I was born with Hydrocephalus with an arachnoid cyst on my brain. During my childhood I have undergone things I shouldn't have lived through. I also have Sherman's Disease, an old vertabrae fracture that didn't heal right, sore and weak knees, sore and weak ankles, sore and weak wrists, most of my joints pop out of place easy but mainly my shoulders, exercise induced asthma, IBS, hormonal imbalances, but the thing that is stopping me the most from losing much weight is the unknown illness I have had for the past 7 years that makes me bedridden more often than not. The symptoms are extreme fatigue, fogginess, anxiety, twitches in the body, unable to connect thoughts, migraines, vision impairment, memory problems (I once forgot about $1000 someone had waiting for me to pick up, not once but 4 times I forgot), nausea and shakiness like I am lacking sugar in my body but my sugars are always fine. Finally got referred from my Neurosurgeon to a neurologist who may know more. But all in all I need to lose about 17kgs more at least and its been 3 months all I have lost is 2kgs. Frustrating! I have weeks where I work out hard, then I burn out for two weeks and can only work out a day a week. At times I go even when I feel sick but end up in a situation where my muscles literally just don't work at all, they dont feel tired or sore, just don't move and I black out every workout I have, without fail even if I am going light. ARRRGGGHHHH So frustrating. Sorry guys, I guess I have been wanting to find a group of people that can understand for a while. Bless you guys 0
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Bump!0
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Does anyone have advice regarding weight loss while fatigued all the time and or getting migraines? I tend to not be able to eat the best cos I have no energy to cook or work out much but I will take on what anyone else has done successfully.0
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I just have PCOS. Pretty much my body thinks I am going to starve myself one day so it stores as much as it cans. =/ It sucks because for the past 5 years I was stuck at 250. This year I decided to lose weight... I went down to 240 and then I stopped working out and bam went to 260. Then I started trying to lose weight again, I went back down to 240 and then when I lost my motivation again I went up to the highest I have ever been which is 275 lbs. Now Im losing weight again but I am sticking to it!!! Im at 264 right now. I hate having PCOS but im tired of letting it control me.0
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Hi, thanks for this post, sometimes you think you are struggling on alone but from the messages I can see a lot of people are trying to loose weight and cope with health and mobility issues.
I have a chronic autoimmune disease, psoriatic arthritis, I have had psoriasis since I was a young child but the arthritis part started when I was about 40. I am 63 now and have had both knees replaced and one hip replacement just last year. The other one will need doing at some point as x-ray shows some degeneration.
Thankfully the pain is controlled quite well by medication but I still have stiffness and get flare ups which are totally random, can be from a big toe or one finger to bigger joints or my lower back. I also feel extremely tired most of the time. On the days were I feel reasonably well and even energetic I still tend to do too much, for instance shopping for 2 hours instead of my usual quick 30 minutes in town and then the day after I am wiped out.
I have found aqua med like aqua fit but gentler is very good and exercising in the water is much easier than in a gym. I do this once a week and also go to a stretch and flex class which is basically the same as the water exercises but in a gym.
all the health professionals tell me to walk more but its easier than it sounds when you have arthritis even with the replacement joints I get tired very quickly so about 20 minutes is the most I can manage, we live in a hilly area, it would probably be easier on the flat.
I have managed to loose 32lbs since February but have stuck at this weight now for about 10 weeks.
I would like to have friends in the same situation but don't know how to do it on this site. Do I need to have Facebook.0 -
Three cheers for Rock Star Mothers!
:flowerforyou: :smooched: 0 -
I have chronic pain and it's taken me a few years to figure out what works. I found I can workout 3x a week, from 45min to an hour, but not much longer or I'll regret it later in the day. A good nights rest decreases the amount of pain I have. And for us, diet is key..we have to rely more on regulating calories because we can't burn as many through exercise.
It just takes time to find what works for you because each of our illnesses/pain are unique. But once you do, you'll be on a roll
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Scoliosis w/ a spinal fusion. Arthritis in most of my joints. Both have lead to chronic pain (2 decades and counting) Severe allergies (food, environment, meds). Morton's in BOTH feet (2 toes on each foot completely numb). Almost blind, with migraines (weekly). Chronic depression (non-reactive to medication).
Life sucks, it keeps trying to off me and I keep fighting and tell it to "f" off, I'm busy over here :smokin:0 -
I was born with Hydrocephalus with an arachnoid cyst on my brain. During my childhood I have undergone things I shouldn't have lived through. I also have Sherman's Disease, an old vertabrae fracture that didn't heal right, sore and weak knees, sore and weak ankles, sore and weak wrists, most of my joints pop out of place easy but mainly my shoulders, exercise induced asthma, IBS, hormonal imbalances, but the thing that is stopping me the most from losing much weight is the unknown illness I have had for the past 7 years that makes me bedridden more often than not. The symptoms are extreme fatigue, fogginess, anxiety, twitches in the body, unable to connect thoughts, migraines, vision impairment, memory problems (I once forgot about $1000 someone had waiting for me to pick up, not once but 4 times I forgot), nausea and shakiness like I am lacking sugar in my body but my sugars are always fine. Finally got referred from my Neurosurgeon to a neurologist who may know more. But all in all I need to lose about 17kgs more at least and its been 3 months all I have lost is 2kgs. Frustrating! I have weeks where I work out hard, then I burn out for two weeks and can only work out a day a week. At times I go even when I feel sick but end up in a situation where my muscles literally just don't work at all, they dont feel tired or sore, just don't move and I black out every workout I have, without fail even if I am going light. ARRRGGGHHHH So frustrating. Sorry guys, I guess I have been wanting to find a group of people that can understand for a while. Bless you guys
I'm sorry to hear you going through this! I made a post a few days ago about diet and bad moods. Low blood sugar plays a big role in moods and can also make you feel dizzy, faint, mental fogginess and bunch of other symptoms. I was trying to go low carb but I don't think it's for me because I've had anemia in the past and low blood sugar runs in my family. I started feeling all the symptoms you described.
I began to look for diets to stabilize blood sugar. I found a program called Food Lover's diet that focuses on this. You don't necessarily need to buy the program (I don't have it), but the principles of combining certain foods to stabilize blood sugar may help you feel better or at least improve some of your symptoms. I've read up on it & started combining foods the way it describes for a few days now and I feel much better. No more mental fogginess and fatigue and it's not really a diet, just a way to pair foods. Maybe this can help. Take care0 -
I was born with Hydrocephalus with an arachnoid cyst on my brain. During my childhood I have undergone things I shouldn't have lived through. I also have Sherman's Disease, an old vertabrae fracture that didn't heal right, sore and weak knees, sore and weak ankles, sore and weak wrists, most of my joints pop out of place easy but mainly my shoulders, exercise induced asthma, IBS, hormonal imbalances, but the thing that is stopping me the most from losing much weight is the unknown illness I have had for the past 7 years that makes me bedridden more often than not. The symptoms are extreme fatigue, fogginess, anxiety, twitches in the body, unable to connect thoughts, migraines, vision impairment, memory problems (I once forgot about $1000 someone had waiting for me to pick up, not once but 4 times I forgot), nausea and shakiness like I am lacking sugar in my body but my sugars are always fine. Finally got referred from my Neurosurgeon to a neurologist who may know more. But all in all I need to lose about 17kgs more at least and its been 3 months all I have lost is 2kgs. Frustrating! I have weeks where I work out hard, then I burn out for two weeks and can only work out a day a week. At times I go even when I feel sick but end up in a situation where my muscles literally just don't work at all, they dont feel tired or sore, just don't move and I black out every workout I have, without fail even if I am going light. ARRRGGGHHHH So frustrating. Sorry guys, I guess I have been wanting to find a group of people that can understand for a while. Bless you guys
I'm so sorry you have had to face so many challenges in your life. But I applaud your desire to become a healthier person in spite of your body's limitations!! It isn't easy to push through the kind of struggles on-going health problems create.
Regarding the Unknown Illness, what have you been tested for already if you don't mind me asking. I have almost all those symptoms from my Fibro and it makes me wonder if this illness could be from a similar background. I truly hope your neurologist can give you answers soon. It helps me to know what it is I'm facing versus a nameless scary thing, perhaps just knowing will take some of the weight off your shoulders.
Also when it comes to exercising I learned the hard way that slow and steady is best. I would do what you are doing and give 110% for about a week (sometimes less than that) only to flare for two weeks. I ended up just taking baby steps. Working out once or twice a day for 15 minutes each doing something relatively low impact and gradually worked my way up to things that required more endurance. Yes it's taken me two months to finally be able to do a solid hour's worth of exercise at once, but I'm not sending myself into a tailspin of flare ups doing it. Maybe that could work better for you too? That way you can take your time while still helping your body become stronger.0 -
Does anyone have advice regarding weight loss while fatigued all the time and or getting migraines? I tend to not be able to eat the best cos I have no energy to cook or work out much but I will take on what anyone else has done successfully.
I haven't looked at your diary entries yet so bear with me (I'm on my phone and not as technologically savvy as I let on lol). But here are some things I have found that have helped me a lot to lose weight and gain muscle/endurance.
1. Drink water. Lots and lots of it. It will help to keep away water retention and flush out your body more easily. Your kidneys and liver will thank you too. I learned that I often confuse thirst for hunger, and so when I am in a snacking mood but don't really feel hungry I have water; and it's helped me to better identify hunger vs. thirst.
2. Eat foods that are dense in nutrients, high in fiber, or high in protein/good fats. You will stay full longer and you will help feed your body the things it needs to get better. If you having a craving that will not die, have a small indulgence. Key word here being small. Example; at my son's birthday I had half a slice of cake sans icing. There are days that I eat horribly; it will happen. I don't try to fast away the calories the next day or punish myself for it. I had a bad day, tomorrow will be better. The big picture is more important than the extra 200 calories I had today.
3. Move however you can. If that is only stretching while in bed, then do that. Try some way to be active everyday. I set a goal for myself that even on my bad/flare up days I would move for at least an hour a day. Five minutes here, ten there, it adds up. You don't have to be running miles or doing deadlifts to exercise. Stretching, light yoga, light calisthetics, walking at the grocery store, it all counts. Once you can do an hour a day see if maybe every third day you can do two hours again, this can be broken up into any time fragments you want. The important thing is to try to move if you can.
4. Take it a day at a time; it's hard for people like us who have bodies that rebel against us. It sucks. And sometimes taking a day or two off is necessary. I took a week and a half off from the gym because my body said rather loudly "Nope." And hat happens. But don't let those set backs stop you. If you are losing weight slower than everyone else focus on the good thing; you ARE losing. Look at your measurements, at your endurance, at whether or not your body feels better than it did. Sometimes th number on the scale won't budge but other really great things are happening. Take your victories as they come, however they come.0 -
Hi, thanks for this post, sometimes you think you are struggling on alone but from the messages I can see a lot of people are trying to loose weight and cope with health and mobility issues.
I have a chronic autoimmune disease, psoriatic arthritis, I have had psoriasis since I was a young child but the arthritis part started when I was about 40. I am 63 now and have had both knees replaced and one hip replacement just last year. The other one will need doing at some point as x-ray shows some degeneration.
Thankfully the pain is controlled quite well by medication but I still have stiffness and get flare ups which are totally random, can be from a big toe or one finger to bigger joints or my lower back. I also feel extremely tired most of the time. On the days were I feel reasonably well and even energetic I still tend to do too much, for instance shopping for 2 hours instead of my usual quick 30 minutes in town and then the day after I am wiped out... all the health professionals tell me to walk more but its easier than it sounds when you have arthritis even with the replacement joints I get tired very quickly so about 20 minutes is the most I can manage, we live in a hilly area, it would probably be easier on the flat.
I have managed to loose 32lbs since February but have stuck at this weight now for about 10 weeks.
I would like to have friends in the same situation but don't know how to do it on this site. Do I need to have Facebook.
I am really glad that this post is helping people besides myself. I had made it in hopes of finding others in a similar situation to make my own support group, and it's fantastic that other people are able to do the same thing. It can feel very lonely and isolating having a chronic illness, let alone trying to lose weight while your illness fights you every step of the way.
My medication has made a huge difference in my quality of life as well, but like you I'm still somewhat limited. Doctors do generally say "move more to help alleviate the issues with your joints" but most don't understand how hard that can be. I have similar days to yours where walking is all I can do. I've learned to gauge my ability day to day and I know when I can push myself and when I need to just rest. My doctor prescribed pain medication for my issues and it's been a godsend. If t weren't for that I wouldn't be doing half as much as I am. About 40% of the time I will flare for about 6 hours after a work out. It sucks, but it is what it is. Initially it was much worse (flaring 1-2 days) so I am hoping over time the flares will continue lessen.
Congratulations on your loss so far by the way!! That is a fantastic achievement. 0 -
I have chronic pain and it's taken me a few years to figure out what works. I found I can workout 3x a week, from 45min to an hour, but not much longer or I'll regret it later in the day. A good nights rest decreases the amount of pain I have. And for us, diet is key..we have to rely more on regulating calories because we can't burn as many through exercise.
It just takes time to find what works for you because each of our illnesses/pain are unique. But once you do, you'll be on a roll
Way to go on finding a routine that works for you and helps you to reach your goals!! I'm somewhat similar in what I can do most days. I can go to the gym and work out for about 45-65 minutes three times a week generally. I follow it up will as much stretching as I can stand to help manage the pain I get sometimes as the day progresses. I can do other day to day stuff (ie, cleaning house, grocery shopping, etc) but all of that is very low impact and in small bursts.0 -
Does anyone have advice regarding weight loss while fatigued all the time and or getting migraines? I tend to not be able to eat the best cos I have no energy to cook or work out much but I will take on what anyone else has done successfully.
I don't know if this applies to your situation, but since I usually don't have much motivation to.cook during the week, I cook up food in big batches on the weekend (usually stews/curry/sauces etc.) then parcel it out over the week/freeze it if I have room. Also, I try to make my meals a day ahead so it's not such a mad dash in the morning.0 -
I have IBD and hyper-mobility which is mainly restricted to shoulders, spine, SIJ's and hips.
Interestingly to the other lady who posted up with hyper-mobility and bloating - my general surgeon said he see's lots of patients with IBD/IBD/digestive complaints who are also hyper-mobile. The two quite often go hand in hand apparently.
Wow, that's really interesting! I too have IBD (crohn's) and hypermobility, I also seem to develop hip dysplasia intermittently. I wasn't aware of the correlation between the 2!0 -
I have high blood pressure and I've been struggling since I was 12 to get it under control.
A family friend of mine is in a similar situation. She's only in her early 20s but has been dealing with high blood pressure and cholesterol issues for years. I hope you are able to find something that helps you.0 -
I have IGA Nephropathy diagnosed in 2001. Has been a slow progression up until recently as I am nearing end stage renal disease. Hoping to hold off dialysis as long as possible but know it will come eventually. So I am doing what I can now to try to get myself in the best shape possible so that when the time comes I am healthy enough for a transplant...nice to have the support of others who can relate to the struggles of trying to loose weight and deal with a chronic disease.0
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Lupus with myositis is my big one. I was initially diagnosed with Rheumatoid Arthritis and Fibro, but that was changed as more symptoms and antibodies in my blood work developed. I’m still not in remission, but feeling pretty good most days. Trying to find what I can and can’t do and when to push myself and when to rest.
Meds for chronic pain and inflammation have made a train wreck of my GI tract. I have IBS, GERD, gastroparesis, ulcers, inflammation/colitis, and a prolonged ileus last year.
It is believed that I tore a disc in my lower back in a car accident in my teens and that disc (L5-S1) later ruptured during childbirth. Had surgery to repair it and a second surgery five years later to destroy a nerve root that became entrapped in a bone spur. It’s starting to give me problems again with sciatica – possibly stenosis.
The past several years have certainly been difficult, but I keep on keeping on.0 -
Spina Bifida, celiac disease, severe food allergies!0
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After reading what everyone else has been through, I feel fairly blessed! I have congenital cardiomyopathy. This has me on beta blockers, but when you combine that with natural hypotension, my BP can be seriously low! (70s/30s at night).
The only weird thing that ever happened is that 3 years ago I had bilateral hearing loss overnight. They MDs didn't know what caused it. Gave me high doses of prednisone but that didn't help. The diagnosis was Autoimmune Inner Ear disease. I was give hearing aids. FF 2 years. I was unemployed and sitting on my back deck with my laptop looking for jobs. Hubby was in the living room watching TV. I went into the house and stopped dead in my tracks. I could hear the TV and my hearing aids weren't in! Hearing is back for the most part, but still terrified I will lose it again. You never know what you miss until it's gone!0 -
Maybe you ( OP or anyone else) would like to join our fibro group here at MFP?
http://www.myfitnesspal.com/groups/home/17616-chronic-pain-fibromyalgia0 -
Hi! You are a fabulous person for enduring all you have. I have celiac disease and your symptoms seem very familiar to the ones I had before gluten free! Maybe that's a route you could take?0
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COPD, hypothyroidism, clinical depression/emotional dysregulation.0
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Hashimoto's thyroiditis, asthma, environmental allergies, patellafemoral syndrome, scarred lungs from a really serious case of pneumonia 2 years ago, depression.
The constant fatigue is the most frustrating thing. Always tired. No matter what I do.0 -
I get "regular" migraines and ocular migraines. I also have diverticular disease that flares up without notice, and I'm 2 flare ups in a 12 month period away from having part of my colon removed. So eating properly, and lots of fiber, is important for me. My GI also found a precancerous polyp, so I get to be scoped out *shudder* every 5 years for the rest of my life.
I just scheduled an appointment with an endocrinologist to figure out what is up with my body after bloodwork I had done ruled out things like PCOS, thyroid problems, and diabetes. I also had an MRI to rule out a pituitary tumor. If the endocrinologist doesn't figure anything out my eye doctor is requesting that I go see a neuro ophthalmologist to try and figure out why my ocular migraines are worsening.
Good times. :drinker:0
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