Other MFPers with health issues?

VeroJuly

Hi there, I've been stuck with Rheumatoid Arthritis (everywhere in my body, not just limited to certain joints) since I'm 21 and have it already started to deform my right hand. I have recurrent pericarditis because of it. IBS and GERD also. I try not to let that stop me and I work out about 5 times a week. I work out hard and have to modify certain exercises depending on my pain at the moment.
Life is a battle

lucystacy71

I have two auto-immune diseases. First, I have IgA Nephropathy, which causes protein to be dumped in the kidneys. I'm in kidney failure and I've been doing dialysis for almost three years. I'm hoping to get a kidney very soon.

Secondly, I have a connective tissue disease called Ehler's Danlos. It's usually characterized by stretchy skin, but I have the type which causes all my ligaments to be too loose and problems with my digestive system. I sprain very easily, and can actually sprain my ankle while standing still.

AccioFitness

I have Lynch Syndrome, which means I have a screwed-up repair gene in my cells. So far I've had two run-ins with tumours in the colon so now have a permanent ileostomy. This summer growths in my ovaries and uterus meant the only option left there was a radical hysterectomy, complete with surgical menopause. That ended up taking two surgeries instead of one, the last of which was 4 weeks back.

So I'm almost 41, on HRT and need to shift this extra weight while maximising bone density while I can. As for the Lynch - well it will be back in one of any number of possible places it can still strike. Can't waste a whole life waiting to find out where though!

I'm so sorry that you have had to cope with so much. I hope that your surgeries have helped to make your life easier, I can't imagine how difficult it has been to go through all of that. Has your recovery gone well?

I relate to trying to refocus and not allowing my health to keep me frozen with worry. I can't waste my life waiting for my flare ups to happen, that isn't living.

Azurite27

I have hashimodo's/hypothyroidism and scoliosis. The scoliosis is worse since it severely affects physical activities/workouts. I have to be very careful with lifting weights, can't jog or run without pinching a nerve, and even walking or using the elliptical is difficult sometimes with my short leg. I've been slowly figuring out exercises I can do that won't make me worse.

tonyajohn

Celiac disease here. I was misdiagnosed with MS for a couple of years before the doctors figured out they pegged me with the wrong autoimmune disease.

AccioFitness

Im 28 and have recently had my thyroid removed due to an imune disorder called graves disease its left me with high bp palpitation eye disease and an unusual amount of excess weight (graves disease usually makes people skinny as a rake, but for me I started out a skinny minny and balloned 30kg heavier into a fatty fatty boombah' but I exercise for at least 30mins every day and am trying to eat healthy Im sure there is lots of eople with health problems on mfp

Has the surgery made coping with your illness easier? I hope it has. I can relate to going from skinny to a blimp though! It makes things so frustrating!

AccioFitness

Asthma: just exercise induced asthma, so I dont run
Arthritis: just aches in the cold so 'round this time of year I start not leaving my house unless I have to.
Allergies: also keeps me indoors this time of year, and in the spring.
Two messed up knees: product of an overly ambitious, not that clever teenager playing volleyball in high school. Injured one once, the other twice.
Messed up back: still don't fully understand this one. Doctor's say I have scar tissue between the vertebrates. It has hurt all my life, the best I can figure, it is from the accident I was in as an infant.
IBS-C, this one has caused major milestones for weight loss and has also provided my highest results. The milestones list is long, and mostly not something to discuss. But, when told not to eat dairy, nuts and high fat/high grease foods anymore, weight loss got easier and the distention in my stomach eased a lot.

Currently pregnant, so of course that's stalling progress at the moment. But, no complaints on that one, progress will have to resume later.

Congratulations on your pregnancy!

I can understand being stuck inside during the winter months. My joints have a tendency to lock up in this kind of weather, which makes doing things like exercising a pain and a half.

I'm sorry about your IBS, but I'm glad that it has offered you a means to lose weight and focus on your nutrition and health. Has altering your diet helped you lessen your symptoms?

AccioFitness

Yes. Too many to list here, actually. I've got Mixed Connective Tissue Disease and FM, both autoimmune diseases, among other things. I've been dealing with it since 1992. Anyone with health issues who are struggling can add me as a friend. I struggle daily with pain & inflammation, but I push myself to exercise, because without it I know I would be bedbound. It's so difficult for people like us; others can't relate to what we go through on a daily basis (just to move, for example)....even though they try to be supportive, no one can understand except someone else with severe health issues. Thanks for posting this! We can support one another.

I'm glad I made this post then! I noticed that several people in their intro posts mentioned health issues, but there wasn't a post about making friends with health issues in order to have a better network of support. You are right, people who don't have illnesses like this can't fully understand the struggle that takes place when we try to become healthy again. It's like everything is twice as difficult to accomplish.

mumblemagic

Athsma, epilepsy, hyperextending tendons, and an ME-trashed immune system (mainly recovered from the ME tiredness issues et al.).

I'm actually doing ok. I've got myself on the right strengths of my athsma and epilepsy medications. I'm doing more excercise, which is making me feel better in myself, I think it's helping reduce the excercise induced element of my athsma and it's definitely helping my immune system - only had flu once this year so far (touch wood). Epilepsy fairly under control. Tendon issues mean I still get random aches and pains but again, the excercise is improving them.

All in all, not too bad. I know that will be hard for some of you to hear if you're having a rough time, but I hope it will cheer some of you up to hear that it isn't all bad and you can do ok despite serious medical conditions.

AccioFitness

Hmm, not quite sure where to begin. I have a rare blood disease which causes my blood to clot, I had a blood clot in my brain at 12. At 18 I developed lupus as a result of it. While diagnosing the Lupus I had a huge allergic reaction to blood thinners and it cause my adrenal glands to fail, so I now have Addison's Disease. And finally, the aforementioned allergic reaction cause a clot in my heart leading to a myocardial infarction.

Thankfully, I've been well (thanks to medication!) for the almost 4 years. I'm on steroids as my body no longer produces adrenaline, so sometimes I do feel tired or worn out, my hair falls out on occasion and if I get a cold I tend to be floored for a few days. But I think being so sick at one point in my life just inspires me to be grateful for each day. And since I have started to change my lifestyle I've never felt better!

When I was initially being diagnosed they thought it was Lupus, however over time they changed the diagnosis to Fibromyalgia. I'm sorry to hear that you've had so much on your plate, especially at such a young age (I was diagnosed officially at 14 so I can relate somewhat to the difficulty that can cause).

I'm so glad to hear that medication has helped to make things better for you. I have similar experiences when I get sick or stressed; my hair will fall out and I will be stuck in bed for days at a time. But like you said, because of it when I am finally well enough again I am driven to push and work harder because I want those periods of time where I am 'normal' to last longer. It's very much a give and take situation, but it's well worth the effort.

mem50

Health issues are high blood pressure, *kitten* positive, ( Hereditary) Diabetic ( Whipple Procedure induced) bad back muscle, screwed up knee and general stuff that come along with older age. :grumble:

AccioFitness

I have Hyperextension in both knees as well as Hypermobile joint disorder in most of my joints, the worst being my hips, wrists and knees. Basically I have dysplasia in most of my joints which hurts like a mother. High energy exercises are a big no-no for me as they can pop my joints out and it's always a struggle to get them back into place. The most I can do is Zumba on easy, walking and swimming. It's hard but I manage to get at least some exercise in most days..

That sounds like it must be incredibly difficult and frustrating. My body does close to the opposite -- it won't move and my muscles and joints freeze up. I'm glad you were able to find exercises that don't cause you injury and have helped you to become healthier!

I truly hope that you will able to have the rest of your treatments soon. I know from person experience how debilitating it can be to go without something you need in order to function.

AccioFitness

I have psoriatic arthritis, Fibro, diabetes II (insulin and oral meds), osteoartrhitis in my knee, PCOS,and chronic migraines. I am currently sidelined due to bilateral hip bursitis which is making any movement of my lower body hell on me. I spend a lot of time sitting on ice packs and taking meds.

When I am feeling better (?) I walk, that's about all I can do at this point in my life. I need to lose about 90 pounds and have been resisting the surgical route, due to the fact that I am on a biologic med (remincade infusions) for the psoriatic arthritis and would have to suspend that if I had surgery. .

Today, I am at work, I can walk with my cane, and I am feeling like a contributing member of society. I'll take that. Tomorrow, well.... we'll cross that bridge when we get there.

Oh wow. I'm sorry you have to cope with so much. You are an inspiring person, seeing that even with everything you face in your day to day life you still try to do the best you can with the body you have. It takes a strong person to keep that mindset.

Sometimes walking is all that I can do, too. Sometimes not even that. Every day I have to assess what I am capable of and accept that there is a boundary as to how much I can do. I've slowly been able to push it further and do more, but it's still there in many ways. We both cross those bridges as they come.

MommaChocoLatte

I have Epilepsy (since I was 9, I am 37 now), anxiety and depression disorders, reproductive issues that are mostly under control. I have had high cholesterol which came with being overweight but that has been corrected. My seizures are under control with medication and I can avoid them as I can feel them coming on ahead of time.

AccioFitness

Hi there, I've been stuck with Rheumatoid Arthritis (everywhere in my body, not just limited to certain joints) since I'm 21 and have it already started to deform my right hand. I have recurrent pericarditis because of it. IBS and GERD also. I try not to let that stop me and I work out about 5 times a week. I work out hard and have to modify certain exercises depending on my pain at the moment.
Life is a battle

RA is a difficult disease to cope with. I can relate to having joint issues everywhere; there isn't one in my body that isn't affected by my Fibro. I think the main difference is that my pain moves and at times it focuses on specific areas while leaving others unaffected. It makes things frustrating though, because I can never know when or where I will flare up so I have to be prepared for anything to happen.

It's inspirational to read that through all of that you still continue on working to be as healthy as you can. The hardest thing some days is just getting out of bed and moving; let alone five days a week. You are incredible!

VeroJuly

Thanks I do what I can, when I can. I love this site, there are so many inspirational people and they just make me want to push myself even more
Hope you get better, I have a friend who has Fybro, she is a lot better now that she reduces stress and has lost a tons of weight. Look trough my profile friends, her nace is Alice in wonderland. I'm sure she would want to be your friend

Best of luck to you xxx

tiggerhammon

Nothing major thankfully. I have a messed up knee and I'm working on getting it better. My knee has really affected how well I can work out and it is depressing at times. I think I have PCOS too. I have/had high cholesterol. I've been lowering that with exercise and eating a little better. I used to have high blood pressure, but once I dumped my Ex that went away. I have a few odd allergies, but they're more of a conversation piece. I'm actually allergic to soda, lol.

Allergic to soda? I wonder what ingredient in the drinks causes you to react negatively? I suppose it comes in handy, since that way you don't end up drinking your calories.

I can understand knee troubles since my Fibro causes my knees to ache and hurt frequently. It's really easy to get discouraged when our bodies don't do what we want them to. I hope over time it improves; good for you on lowering your other stats!

I am actually allergic to HFCS. Love that Sierra Mist has a sugar version.

IamUndrCnstruction

Hi! I have Pulmonary Hypertension, and an undiagnosed form of pulmonary fibrosis. have also been diagnosed with Tourette's Disorder (no, I do not spout random curse words, though have though about it just for fun). I am on supplemental o2 twenty four hours a day. I will be listed for a double lung transplant as soon as I drop these last 6 pounds to get me under 200lbs. Unless they find some other thing for me to do (this has been a year long process to be listed). All the meds and steroids do not help with weight loss. Needless to say it makes working out a little difficult, but I have worked myself up from not being able to walk for 20 minutes to being able to walk for 5 miles a day 4 days a week and just recently was able to run for a full minute and 20 seconds (all while on o2, blue is not my color if you know what I mean). So far I have lost about 25 pounds in total!!

MB_Positif

Haha, I just posted the same link in another thread. I am busy at work, but I can relate. Here's the link to my story that I posted earlier this year!

http://www.myfitnesspal.com/topics/show/918358-they-cut-my-head-open-your-excuse-is-invalid

Cait_Sidhe

I was born with a very rare genetic bone disease called Congenital Multiple Osteochondramotosis or Multiple Hereditary Exostoses (it has 2 names). Basically, I have bone and cartilage tumors on every joint in my body excluding my head. My first orthopedic surgery was when I was 3, my last when I was 28. I lift heavy weights (5/3/1) , was running, and I dance.