Anyone trying to lose weight with a long term illness?
gypsyrose85
Posts: 206 Member
I always knew I wanted to lose weight. I didn't start getting serious about it until I found out I have brain tumors caused form a genetic disorder known as Nerofibromatosis type 1. I also have Fibro so working out can be difficult some days though I do chase after 5 kids LOL! What do you find to be the hardest thing to overcome for yourself?
(for those that have no idea what NF is)
Neurofibromatoses are genetic disorders of the nervous system. Mainly, these disorders affect the growth and development of nerve cell tissue. The disorders are known as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of neurofibromatosis.
NF1, also called von Recklinghausen NF or peripheral NF, is characterized by multiple café au lait spots (patches of tan or light brown skin) and neurofibromas (soft, fleshy growths) on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities.
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NF2, also called Bilateral Acoustic NF (BAN), is much less common than NF1 and is characterized by multiple tumors on the cranial and spinal nerves. Tumors affect both of the auditory nerves and hearing loss beginning in the teens or early twenties is generally the first symptom.
What Causes Neurofibromatosis?
Neurofibromatosis is often inherited (passed on by family members through our genes), but 30% to 50% of people newly diagnosed with the disorder have no family history of the condition, which can arise spontaneously through a mutation (change) in the genes. Once this change has taken place, the mutant gene can be passed on to future generations.
What Are the Symptoms of Neurofibromatosis?
The following symptoms appear in people with NF1:
Several (usually 6 or more) café au lait spots
Multiple freckles in the armpit or groin area.
Tiny growths in the iris (colored area) of the eye. These are called Lisch nodules and usually do not affect eyesight.
Neurofibromas that occur on or under the skin, sometimes even deep within the body. These are benign (harmless) tumors; however, in rare cases, they can turn malignant or cancerous.
Bone deformities including a twisted spine (scoliosis) or bowed legs.
Tumors along the optic nerve, which may cause eyesight problems.
Nerve-related pain
People with NF2 often display the following symptoms:
Loss of hearing
Weakness of the muscles of the face
Dizziness
Poor balance
Uncoordinated walking
Cataracts (cloudy areas on the lens of the eye) that develop at an unusually early age
What Is the Outlook for a Person With NF?
The outlook for a person with neurofibromatosis depends on the type of NF they have. NF1 may reduce life expectancy by up to 15 years, usually because of malignant tumors. Early diagnosis and treatment can reduce mortality rates.
The outlook for people with NF2 depends of the person's age at the diseases onset and on the number and location of tumors. Prompt diagnosis and treatment can improve life expectancy to more than 15 years following diagnosis.
http://www.webmd.com/pain-management/neurofibromatosis?page=2
(for those that have no idea what NF is)
Neurofibromatoses are genetic disorders of the nervous system. Mainly, these disorders affect the growth and development of nerve cell tissue. The disorders are known as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of neurofibromatosis.
NF1, also called von Recklinghausen NF or peripheral NF, is characterized by multiple café au lait spots (patches of tan or light brown skin) and neurofibromas (soft, fleshy growths) on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities.
Recommended Related to Pain Management
5 Common Pain and Pain Relief Myths
What you don't know about pain and pain relief can hurt you. Great strides have been made in the understanding of pain and its treatment in the last decade. Pain that was once considered hopeless is now manageable. Medical evidence proves that many of the beliefs about pain and pain relief are false. Here's what experts say you should know about five of the most common pain relief myths:
Read the 5 Common Pain and Pain Relief Myths article > >
NF2, also called Bilateral Acoustic NF (BAN), is much less common than NF1 and is characterized by multiple tumors on the cranial and spinal nerves. Tumors affect both of the auditory nerves and hearing loss beginning in the teens or early twenties is generally the first symptom.
What Causes Neurofibromatosis?
Neurofibromatosis is often inherited (passed on by family members through our genes), but 30% to 50% of people newly diagnosed with the disorder have no family history of the condition, which can arise spontaneously through a mutation (change) in the genes. Once this change has taken place, the mutant gene can be passed on to future generations.
What Are the Symptoms of Neurofibromatosis?
The following symptoms appear in people with NF1:
Several (usually 6 or more) café au lait spots
Multiple freckles in the armpit or groin area.
Tiny growths in the iris (colored area) of the eye. These are called Lisch nodules and usually do not affect eyesight.
Neurofibromas that occur on or under the skin, sometimes even deep within the body. These are benign (harmless) tumors; however, in rare cases, they can turn malignant or cancerous.
Bone deformities including a twisted spine (scoliosis) or bowed legs.
Tumors along the optic nerve, which may cause eyesight problems.
Nerve-related pain
People with NF2 often display the following symptoms:
Loss of hearing
Weakness of the muscles of the face
Dizziness
Poor balance
Uncoordinated walking
Cataracts (cloudy areas on the lens of the eye) that develop at an unusually early age
What Is the Outlook for a Person With NF?
The outlook for a person with neurofibromatosis depends on the type of NF they have. NF1 may reduce life expectancy by up to 15 years, usually because of malignant tumors. Early diagnosis and treatment can reduce mortality rates.
The outlook for people with NF2 depends of the person's age at the diseases onset and on the number and location of tumors. Prompt diagnosis and treatment can improve life expectancy to more than 15 years following diagnosis.
http://www.webmd.com/pain-management/neurofibromatosis?page=2
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Replies
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Yes I am. I have diabetes.0
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I was diagnosed with Ulcerative Colittis in August, although its only a mild to moderate case, it is a life long disease. I can take steps to getting it in remission, but there is noway of knowing the best way to do this, or for how long it will be in remission. For me I've just worked through the pain and issues. I've used excuses all my life, that's why I was in such bad shape, and so overweight, so when I was told I had this, all I could think about was how this was not going to dictate how I live my life. I've had to alter somethings, but for the most part, I've kept doing the same things I was doing befoer I was diagnosed. It hasn't always been easy, and sometimes I need to take extra rest days, but I'm not going to let it beat me.
I'd say the hardest thing to overcome is the desire to just be lazy, I mean I have an excuse now to just lay around and not do anything, and some days that desire is pretty strong, but so far I've been able to fight that feeling off.
Hope you stick with the workouts.0 -
Wow that must be hard. Do you feel pressured into losing the weight with your illness?Yes I am. I have diabetes.0 -
I certainly have been trying. Unfortunately depression has hit me hard lately. My youngest just got diagnosed with NF as well, my oldest started having seizures, we found out about my brain tumors in Aug. At first they didn't think I would need surgery now with a closer look at the MRI they think I may need it and want to do another MRI and have me meet with the neurosurgeon. Some days I feel like If life is going to hell anyways why try. Then I kick myself in the *kitten* and try to get myself motivated again. I HAVE to lose this weight. I don't want to die early on my kiddos. I have 5 kids to raise. I can't leave my husband alone to raise them.I was diagnosed with Ulcerative Colittis in August, although its only a mild to moderate case, it is a life long disease. I can take steps to getting it in remission, but there is noway of knowing the best way to do this, or for how long it will be in remission. For me I've just worked through the pain and issues. I've used excuses all my life, that's why I was in such bad shape, and so overweight, so when I was told I had this, all I could think about was how this was not going to dictate how I live my life. I've had to alter somethings, but for the most part, I've kept doing the same things I was doing befoer I was diagnosed. It hasn't always been easy, and sometimes I need to take extra rest days, but I'm not going to let it beat me.
I'd say the hardest thing to overcome is the desire to just be lazy, I mean I have an excuse now to just lay around and not do anything, and some days that desire is pretty strong, but so far I've been able to fight that feeling off.
Hope you stick with the workouts.0 -
Present! Fibro, peripheral neuropathy, narcolepsy w/ cataplexy, sleep apnea, orthostatic hypotension. Each one lovely enough on it's own, but in combo life's a blast. I've got to give myself more time to lose because of the flare ups.0
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Oh my goodness, yes. I have an answer for you. I stumbled upon this because I have recently been diagnosed with diabetes and I am a researcher. I'll message you because the research is recent and people are not going like it.
I started this diet/life-change 3 months ago and I rarely exercise--I've lost 39 pounds in those 3 months alone and I have eliminated my diabetes as long as I follow this diet plan. It's wonderful and I am never deprived.
If anyone else is interested, email me.0 -
I have Ehlers-Danlos sydrome which is a connective tissue disorder. My joints dislocate very easily and I don't have full use of my left hip anymore because of it. The best plan will vary illness to illness, but for me, putting on muscle around my joints has caused them to be a lot more stable. EDS also causes hypotrophy so I have to work a little harder to put on muscle. Especially since my metabolism is slow because I have hypothyroidism.0
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I have Ehlers-Danlos sydrome which is a connective tissue disorder. My joints dislocate very easily and I don't have full use of my left hip anymore because of it. The best plan will vary illness to illness, but for me, putting on muscle around my joints has caused them to be a lot more stable. EDS also causes hypotrophy so I have to work a little harder to put on muscle. Especially since my metabolism is slow because I have hypothyroidism.
One of my best friends has this along with Chari. It is a very hard disorder. I have seen her colapse just from walking when her hip poped out of joint. She was worried I have it because I have hyper mobility in many of my joints but thankfully it was ruled out. Even at 226 pounds I can stand with my toes under the front part of my feet (so I am just standing on the knuckles of my toes)0 -
I certainly have been trying. Unfortunately depression has hit me hard lately. My youngest just got diagnosed with NF as well, my oldest started having seizures, we found out about my brain tumors in Aug. At first they didn't think I would need surgery now with a closer look at the MRI they think I may need it and want to do another MRI and have me meet with the neurosurgeon. Some days I feel like If life is going to hell anyways why try. Then I kick myself in the *kitten* and try to get myself motivated again. I HAVE to lose this weight. I don't want to die early on my kiddos. I have 5 kids to raise. I can't leave my husband alone to raise them.I was diagnosed with Ulcerative Colittis in August, although its only a mild to moderate case, it is a life long disease. I can take steps to getting it in remission, but there is noway of knowing the best way to do this, or for how long it will be in remission. For me I've just worked through the pain and issues. I've used excuses all my life, that's why I was in such bad shape, and so overweight, so when I was told I had this, all I could think about was how this was not going to dictate how I live my life. I've had to alter somethings, but for the most part, I've kept doing the same things I was doing befoer I was diagnosed. It hasn't always been easy, and sometimes I need to take extra rest days, but I'm not going to let it beat me.
I'd say the hardest thing to overcome is the desire to just be lazy, I mean I have an excuse now to just lay around and not do anything, and some days that desire is pretty strong, but so far I've been able to fight that feeling off.
Hope you stick with the workouts.
I seriously just want to give you such a great big hug right now. :flowerforyou:0 -
I certainly have been trying. Unfortunately depression has hit me hard lately. My youngest just got diagnosed with NF as well, my oldest started having seizures, we found out about my brain tumors in Aug. At first they didn't think I would need surgery now with a closer look at the MRI they think I may need it and want to do another MRI and have me meet with the neurosurgeon. Some days I feel like If life is going to hell anyways why try. Then I kick myself in the *kitten* and try to get myself motivated again. I HAVE to lose this weight. I don't want to die early on my kiddos. I have 5 kids to raise. I can't leave my husband alone to raise them.I was diagnosed with Ulcerative Colittis in August, although its only a mild to moderate case, it is a life long disease. I can take steps to getting it in remission, but there is noway of knowing the best way to do this, or for how long it will be in remission. For me I've just worked through the pain and issues. I've used excuses all my life, that's why I was in such bad shape, and so overweight, so when I was told I had this, all I could think about was how this was not going to dictate how I live my life. I've had to alter somethings, but for the most part, I've kept doing the same things I was doing befoer I was diagnosed. It hasn't always been easy, and sometimes I need to take extra rest days, but I'm not going to let it beat me.
I'd say the hardest thing to overcome is the desire to just be lazy, I mean I have an excuse now to just lay around and not do anything, and some days that desire is pretty strong, but so far I've been able to fight that feeling off.
Hope you stick with the workouts.
I seriously just want to give you such a great big hug right now. :flowerforyou:
Ty. I think it hits me so hard because the majority of what is going on all happened after august of this year. (The day after I found out about my brain tumors was my sons first seizure and he fell down 14 stairs). I found out out about my NF in January. Other stuff has happend but minor (son needed tubes put in and adnoids taken out, and other things like that)0 -
Do they think the sleep apnea will go away when your weight does?Present! Fibro, peripheral neuropathy, narcolepsy w/ cataplexy, sleep apnea, orthostatic hypotension. Each one lovely enough on it's own, but in combo life's a blast. I've got to give myself more time to lose because of the flare ups.0 -
That is rough, I went through some depression after I was diagnosed, but I fought through it, but you are going through a lot more than I did. Hope things slowly get better, and exercise can be a good stress reliver, so that's one reason I stick with it now. I recently got a heavy punching bag, now that relieves a lot of stress, plus its great cardio.
I certainly have been trying. Unfortunately depression has hit me hard lately. My youngest just got diagnosed with NF as well, my oldest started having seizures, we found out about my brain tumors in Aug. At first they didn't think I would need surgery now with a closer look at the MRI they think I may need it and want to do another MRI and have me meet with the neurosurgeon. Some days I feel like If life is going to hell anyways why try. Then I kick myself in the *kitten* and try to get myself motivated again. I HAVE to lose this weight. I don't want to die early on my kiddos. I have 5 kids to raise. I can't leave my husband alone to raise them.I was diagnosed with Ulcerative Colittis in August, although its only a mild to moderate case, it is a life long disease. I can take steps to getting it in remission, but there is noway of knowing the best way to do this, or for how long it will be in remission. For me I've just worked through the pain and issues. I've used excuses all my life, that's why I was in such bad shape, and so overweight, so when I was told I had this, all I could think about was how this was not going to dictate how I live my life. I've had to alter somethings, but for the most part, I've kept doing the same things I was doing befoer I was diagnosed. It hasn't always been easy, and sometimes I need to take extra rest days, but I'm not going to let it beat me.
I'd say the hardest thing to overcome is the desire to just be lazy, I mean I have an excuse now to just lay around and not do anything, and some days that desire is pretty strong, but so far I've been able to fight that feeling off.
Hope you stick with the workouts.0 -
I have Ehlers-Danlos Syndrome, osteopenia, fibro, lupus,arthritis, and hypoglycemia. Sadly I'm forgetting a few. The EDS is my worst, and I just had knee surgery to replace a tendon, a ligament, and reposition my patella. I need to lose 50 pounds to make life easier for my joints. I would like to walk again unassisted, but we'll see.0
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Just came across this post. I have Ehlers-Danlos Syndrome (EDS), Dyspraxia, Aspergers, Postural Orthostatic Tachycardia Syndrome (POTS), Asthma, Dysphagia, and many more things. Am slowly losing the weight to hopefully ease some of the pressure on my joints. Use a wheelchair the majority of the time, I do a little walking in the house with braces on but that's pretty much it. It's hard but in the long run will be worth it. If any of you want to add me then go ahead. I'm looking for new friends on here, especially people who understand long term illness.0
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i have neurofibromatosis. not sure if i can blame it for the recent weight gain or not, but the weight gain sure does form more neurofibromas....
i hate these little bumps! 0 -
just found this and boy am I relieved.... I also have neurofibromatosis type 1. I only found out for sure last year. have had it a while to be honest but didn't think it was a big deal. I also have those damned little bumps all over my body. My doc said I had a mild case of it which still doesn't stop me from worrying from time to time that I might be growing a cancer somewhere. My Mum also had neurofibromatosis, I think she may have had NF2 - she passed away from a brain tumour in 2009 so there is always that worry it could happen to me
Does anyone else with NF1 or 2 find they get achy kneees randomly??0 -
I have Ulcerative Colitis, diagnosed in September 2009 but I'd had symptoms and went untreated for 10 months. I ended up in the hospital for a week on a liquid diet, IV fluids and IV steroids to get my flare under control. The steroids were the beginning of my weight gain. I started at 60mg and it took me about 9 months to taper off them completely. I'm under control with non-steroid maintenance medicine and it's like I was never sick. Now I only flare if I catch a tummy bug. If you bring your puking self within 20 feet of me, don't be offended if I run in the other direction.
I always require steroids to get out of a flare, and I gain weight really fast on prednisone. I'm a Lysol and hand sanitizer fanatic.
Anyway, for a long time I couldn't eat raw fruits or vegetables and exercise made me cramp, double over in pain and run to the bathroom...way TMI, lol. I'm a picture of health right now though and really lucky I found the medication that worked for me. Now is the perfect time to get back to my goal weight! 0 -
I have osteogenesis imperfecta. I've had it my whole life but thankfully I have the "best" type - meaning a lot less of the issues that can accompany more serious types. Basically it is a lack of collagen in the bones and I tend to break easily. I just make sure to be careful when exercising. I'm a huge fan of low impact exercise. I do like to do turbo jam but I try to follow the modifications to make injury less likely. But my OI is part of why I want to lose weight. I want to take some of the pressure of my joints and body in general. If I weigh less I won't fall as hard. 0
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sorry another question - those with neurofibromatosis, do you take any any extra vitamins/supplements etc? do you know if there are things to avoid or things we need more of? thanks0
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I have EDS as well (hypermobility type), plus consistent GI problems that are only somewhat moderated by diet, and a host of mental illnesses. EDS limits pretty significantly the kinds of exercise I can do, but I need to build muscle to help protect my joints, so I'm slowly building on bodyweight strength training. Some days I just can't do things, but my pain is mostly controlled thanks to a really good doctor and some proactive treatments. I take a handful of pills every day, but it's turned all my illnesses into things I can mostly manage on a day to day basis. Fortunately my job will let me work from home if I have a bad pain flare too, so I'm very lucky.0
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I don't have anything but my wife has postural orthostatic tachycardia syndrome (pots) as well as pcos. So i have been working on her diet and designing and exercise (weight training only) routine for her. Luckily we have some of the top specialist in my area for this condition.0
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Hugs to all of you. I wish you the best on your journeys.0
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Hugs to all of you. I wish you the best on your journeys.
This from me also!!
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I have intracranial hypertension. It's not fun.0
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Wow - prayers and hugs to all of you! I had a stroke and multiple heart attacks at the age of 41. My weight was not a factor but an undiagnosed heart condition from birth. I also have sleep apnea. Went thru extensive therapy and still have some right-side deficit mainly my right arm/hand. I need to get my weiht down but moreimportantly I want to be able to breathe better and feel better for my family. Good luck to all. ((hugs))0
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