Anyone with limited mobility?

EevieColin

Hi, my name is Amanda.

I've recently become physically disabled with suspected Rheumatoid Arthritis/ MS/Fibromyalgia. I've gone from being an active walker, who loves going to the gym and to exercise classes, to walking with 2 sticks and being constantly fatigued. I can't walk any further than 0.5 of a mile per day.

I've gained 20kg this year after being house/bed-bound for over a month from the pain level. I am really struggling to find ways to motivate myself to exercise when it is so physically painful and exhausting for me. I am taking regular medication as prescribed but even with this, I am very limited.

My diet is terrible and I'm obviously going to do what I can to try and make positive changes.

Is there anyone else who has a chronic illness who has limited mobility? How do you deal with this? How am I supposed to lose weight? I've lost all my muscle and my legs and hips are very weak.

Iwannabeapunkrockmom

Hi there! I also have RA asking other things, and have limited mobility. I use a walking cane about half of the time and was bed bound much of last year. Making positive changes in my diet have really helped with inflammation. I still have to be very careful because RA and treatment have also given me digenerative Disc disease and several other back problems, but I can do a little more than before I started watching my diet. I moved to two meals and a snack every day. I replaced lunch with a salad every day and try to reduce foods and activity that trigger inflammation. You can lose weight by counting your calories and following MFP guidance. I also wear a fitbit to monitor my well-being and activity levels and I feel that helps make sure that I am eating accurate calories every day. As far as activity does, just do what you can do, and rest when you need to rest. You can lose weight just by eating at a calorie deficit.

Most importantly, I think it's important to set goals, make a plan, and stick to it. A few months down the road you can look back and start to see progress and you'll be glad you tried.

queanmum

As a retired RN, I think you should get a second opinion. There isn't any reason for having suspected RA or MS. There are definitive tests for both and good medications to help with symptoms. You need a rheumatologist and a neurologist. You really need to be your own advocate and make them listen to you. Take care.

406MamaBear

You’re taking great first steps by joining MFP and reassessing your diet! Kudos to you! I know how frustrating it can be to chase a diagnosis, but I want to encourage you to keep showing up for yourself. Read up about weighing your foods. You’ll find lots of good advice here.

g2renew

EevieColin wrote: »

Hi, my name is Amanda.

I've recently become physically disabled with suspected Rheumatoid Arthritis/ MS/Fibromyalgia. I've gone from being an active walker, who loves going to the gym and to exercise classes, to walking with 2 sticks and being constantly fatigued. I can't walk any further than 0.5 of a mile per day.

I've gained 20kg this year after being house/bed-bound for over a month from the pain level. I am really struggling to find ways to motivate myself to exercise when it is so physically painful and exhausting for me. I am taking regular medication as prescribed but even with this, I am very limited.

My diet is terrible and I'm obviously going to do what I can to try and make positive changes.

Is there anyone else who has a chronic illness who has limited mobility? How do you deal with this? How am I supposed to lose weight? I've lost all my muscle and my legs and hips are very weak.

Speaking as someone officially disabled with diagnosed Myasthenia Gravis, along with a few other auto-immune issues- believe me, I feel for anyone who is unable/or having difficulty with mobility. Moving, breathing, eating at all and without choking, even just being able to sit up has been difficult over the past year, to understate it. In spite of that, I gained about 10 pounds while having my muscles atrophy. BTW- I was overweight before I gained this, so I can think of all kinds of reasons to be outdone with myself! Arrgh! The atrophied muscles have caused issues with rotator cuffs and without all of the explanation involved, I had surgery last October which helped reduce my pain levels on my right side considerably. We don't even realize sometimes the level of pain we are in until it is reduced. I attribute the weight gain to the bad food choices I made in order to self-medicate/comfort---lots of full-sugar soda, soft cakes, ice cream, fast food, you get the idea. I have been unbelievably thankful that in spite of all of the above, I have managed to stay out of the hospital and hope to continue to be able to do so.

I can now walk about 600+ steps a day, as I work with specialists to come up with a medication plan to get my situation stable. I try to add steps as possible (a few days I have been able to almost double those steps!), rest whenever I need to-whether it be for a few minutes, or a few days, and do little silly things like raise my bent legs to my chest a few times while still in bed (3-10 each leg, depending on my condition at the time) and raise my arms over my head while still in bed lying down (Again, 3-6X). Today, I pulled a few weeds in the front yard. We wont even talk about how much exercise I probably got sitting and trying to get up! Sometimes, I know I look so funny as I struggle that I laugh out loud at the situation. Lucky me, I have family that can laugh with me, rather than at me, too!:-)

What has helped me lose 10.6lbs since Feb 22 has been my attitude and my diet. Every step I make in the right direction is a good one. Any little slip up is a reason to try again. I have tracked my intake on MFP daily since Mar 1, trying to increase my protein and fiber, along with my water and greens. I am also staying away from those sodas, processed foods, and anything with added sugar. I also am staying away from artificial sweeteners as much as possible, and have found that even stevia, etc, make me crave the sweet stuff harder, so I use that very little-like 1-2x week, if I 'have' to. I do not weigh myself everyday: the increases that pop up from time to time are a bit disheartening, so weekly or 2x/week is it for me. I am not trying to set the world on fire or lose all of my weight overnight (32lbs lost from my start weight is my goal). If I lose a half pound a week, I say "Yay me!", and I secretly hope for 1.5lbs (which just happens to be what the average has worked out to be!). I still have 20 to go. I will decide from there what to do about losing more.

You can do this! I do suggest you get a good rheumatologist and neuromuscular specialist, but remember, medical personnel are like everyone else-imperfect and mistakes/misdiagnoses are made. Don't give up. Look for someone who specializes in whatever you suspect you have to treat you. If you cannot get a confirmed diagnosis, ask why not. Then ask if there are other things that might have similar symptoms. Then ask what they would suggest their mom/sister/daughter do if they were in your shoes. FYI: I had multiple physicians, including a local renowned rheumatologist, tell me that my symptoms were because I was 'getting older' (when it started, I had just turned 50 and had always been VERY active) before a physician asked me to come in to his office so that he could see what I looked like when I said my eyes would 'get tired'. It made a difference for him to 'see' what that 'looked like'. I had a diagnosis in 30 seconds, but it took almost a year to get it 'confirmed' via other specialists. We are still 'working on' getting me 'fixed'. I decided to do what I could- even if it is only a little-and to do the best I can while I wait for the 'miracle':-). Without sounding too 'preachy', I think I have already found the 'miracle'---it is my attitude and my mindset. These are within our control when all else is so far out of control.Of course, I still want the physical healing, too. Best wishes to you on this journey. May you find your 'miracle', too<3.

EevieColin

queanmum wrote: »

As a retired RN, I think you should get a second opinion. There isn't any reason for having suspected RA or MS. There are definitive tests for both and good medications to help with symptoms. You need a rheumatologist and a neurologist. You really need to be your own advocate and make them listen to you. Take care.

Thank you, I am currently under a rheumy and a neurologist and undergoing investigation and have good support from my GP It's just taking a while because of NHS waiting times/COVID restrictions.

EevieColin

Iwannabeapunkrockmom wrote: »

Hi there! I also have RA asking other things, and have limited mobility. I use a walking cane about half of the time and was bed bound much of last year. Making positive changes in my diet have really helped with inflammation. I still have to be very careful because RA and treatment have also given me digenerative Disc disease and several other back problems, but I can do a little more than before I started watching my diet. I moved to two meals and a snack every day. I replaced lunch with a salad every day and try to reduce foods and activity that trigger inflammation. You can lose weight by counting your calories and following MFP guidance. I also wear a fitbit to monitor my well-being and activity levels and I feel that helps make sure that I am eating accurate calories every day. As far as activity does, just do what you can do, and rest when you need to rest. You can lose weight just by eating at a calorie deficit.

Most importantly, I think it's important to set goals, make a plan, and stick to it. A few months down the road you can look back and start to see progress and you'll be glad you tried.

Thank you for responding, this is all really useful information.

I have dug out my fitness watch and am charging it this morning in an effort to get in the habit of wearing it again.

I was thinking about trying swimming as I've been told this is gentle on the joints but now the gyms have opened, everyone has flooded to the pools here and they are booked up for the next two months

I have seen a few people mention diet changes in regard to managing inflammation so I'm going to ask my rheumy about this when I can finally get a face-to-face appointment and I'll have a look online.

EevieColin

g2renew wrote: »

EevieColin wrote: »

Hi, my name is Amanda.

I've recently become physically disabled with suspected Rheumatoid Arthritis/ MS/Fibromyalgia. I've gone from being an active walker, who loves going to the gym and to exercise classes, to walking with 2 sticks and being constantly fatigued. I can't walk any further than 0.5 of a mile per day.

I've gained 20kg this year after being house/bed-bound for over a month from the pain level. I am really struggling to find ways to motivate myself to exercise when it is so physically painful and exhausting for me. I am taking regular medication as prescribed but even with this, I am very limited.

My diet is terrible and I'm obviously going to do what I can to try and make positive changes.

Is there anyone else who has a chronic illness who has limited mobility? How do you deal with this? How am I supposed to lose weight? I've lost all my muscle and my legs and hips are very weak.

Speaking as someone officially disabled with diagnosed Myasthenia Gravis, along with a few other auto-immune issues- believe me, I feel for anyone who is unable/or having difficulty with mobility. Moving, breathing, eating at all and without choking, even just being able to sit up has been difficult over the past year, to understate it. In spite of that, I gained about 10 pounds while having my muscles atrophy. BTW- I was overweight before I gained this, so I can think of all kinds of reasons to be outdone with myself! Arrgh! The atrophied muscles have caused issues with rotator cuffs and without all of the explanation involved, I had surgery last October which helped reduce my pain levels on my right side considerably. We don't even realize sometimes the level of pain we are in until it is reduced. I attribute the weight gain to the bad food choices I made in order to self-medicate/comfort---lots of full-sugar soda, soft cakes, ice cream, fast food, you get the idea. I have been unbelievably thankful that in spite of all of the above, I have managed to stay out of the hospital and hope to continue to be able to do so.

I can now walk about 600+ steps a day, as I work with specialists to come up with a medication plan to get my situation stable. I try to add steps as possible (a few days I have been able to almost double those steps!), rest whenever I need to-whether it be for a few minutes, or a few days, and do little silly things like raise my bent legs to my chest a few times while still in bed (3-10 each leg, depending on my condition at the time) and raise my arms over my head while still in bed lying down (Again, 3-6X). Today, I pulled a few weeds in the front yard. We wont even talk about how much exercise I probably got sitting and trying to get up! Sometimes, I know I look so funny as I struggle that I laugh out loud at the situation. Lucky me, I have family that can laugh with me, rather than at me, too!:-)

What has helped me lose 10.6lbs since Feb 22 has been my attitude and my diet. Every step I make in the right direction is a good one. Any little slip up is a reason to try again. I have tracked my intake on MFP daily since Mar 1, trying to increase my protein and fiber, along with my water and greens. I am also staying away from those sodas, processed foods, and anything with added sugar. I also am staying away from artificial sweeteners as much as possible, and have found that even stevia, etc, make me crave the sweet stuff harder, so I use that very little-like 1-2x week, if I 'have' to. I do not weigh myself everyday: the increases that pop up from time to time are a bit disheartening, so weekly or 2x/week is it for me. I am not trying to set the world on fire or lose all of my weight overnight (32lbs lost from my start weight is my goal). If I lose a half pound a week, I say "Yay me!", and I secretly hope for 1.5lbs (which just happens to be what the average has worked out to be!). I still have 20 to go. I will decide from there what to do about losing more.

You can do this! I do suggest you get a good rheumatologist and neuromuscular specialist, but remember, medical personnel are like everyone else-imperfect and mistakes/misdiagnoses are made. Don't give up. Look for someone who specializes in whatever you suspect you have to treat you. If you cannot get a confirmed diagnosis, ask why not. Then ask if there are other things that might have similar symptoms. Then ask what they would suggest their mom/sister/daughter do if they were in your shoes. FYI: I had multiple physicians, including a local renowned rheumatologist, tell me that my symptoms were because I was 'getting older' (when it started, I had just turned 50 and had always been VERY active) before a physician asked me to come in to his office so that he could see what I looked like when I said my eyes would 'get tired'. It made a difference for him to 'see' what that 'looked like'. I had a diagnosis in 30 seconds, but it took almost a year to get it 'confirmed' via other specialists. We are still 'working on' getting me 'fixed'. I decided to do what I could- even if it is only a little-and to do the best I can while I wait for the 'miracle':-). Without sounding too 'preachy', I think I have already found the 'miracle'---it is my attitude and my mindset. These are within our control when all else is so far out of control.Of course, I still want the physical healing, too. Best wishes to you on this journey. May you find your 'miracle', too<3.

Thank you so much for such a detailed reply, this is all really useful for me and gives me a bit of hope that I can do this! It sounds like you are doing an amazing job!

I definitely was fobbed off for over 18 months, I was told my problems were because I was getting old - I was 28/29 at the time (I don't know how some of these doctors manage to stay in their profession with answers like this) It wasn't until I was literally bed-bound that I was taken seriously at all and then everyone seemed to panic and started referring me everywhere and doing loads of tests to try and find out what was going on, so I can relate with the frustration. They are still in the process of doing tests atm and I'm being told well, it's either this or this, or a combination, but I will feel a relief when I know for sure.

I've been trying to do little and often, but as you describe, some days even just walking up the stairs can fatigue me severely. But I am doing my best when I can. I think I'm struggling to adjust what my "new best" is, vs my "old best". I keep thinking that I must not be trying hard enough or that I'm being lazy but I know this isn't true.

My diet is awful at the moment, I am definitely comfort eating and I've been taking steroids as well for my joints which I know can cause weight gain. I've just changed my antidepressants too and I've noticed a massive increase in my appetite since - I feel hungry all the time. Like you said, it's making the positive changes though, I've cut down on sugar and have replaced all my snacks with fruit/veg/healthy alternatives as snacking seems to be a problem for me which is odd because I've never been a big snacker! It's literally started this year.

I've made myself a list of realistic goals and hopefully I can try and start small and work from there.

yirara

EevieColin wrote: »

queanmum wrote: »

As a retired RN, I think you should get a second opinion. There isn't any reason for having suspected RA or MS. There are definitive tests for both and good medications to help with symptoms. You need a rheumatologist and a neurologist. You really need to be your own advocate and make them listen to you. Take care.

Thank you, I am currently under a rheumy and a neurologist and undergoing investigation and have good support from my GP It's just taking a while because of NHS waiting times/COVID restrictions.

Oh, you're in the UK. Yeah, things can be difficult there. I suggest you get printouts from all blood tests you ever had, and possible also all hospital letters. Your GP can't deny them to you because it's your data. Keep them in case anything gets lost or someone doesn't have some reports at hand when you speak to them. Also have a look through all your blood tests to see if there's anything close to to reference value or even too low. I'm writing this because in the UK a simple vitamin b12 deficiency is often missed and people get diagnosed with ME and similar. Note: a blood test for B12 deficiency is only reliable if you're off any B12 supplements for at least 4 months. Otherwise the blood test will show as normal while you're not.

Mondowefte

I want you to know that it is doable. Even though our illnesses and medications often make it more difficult, it is still possible.

Today I walked less than 500 steps. That is unfortunately common. But I have also lost 24kg (50lb) in 8 months. It all comes down to diet. CICO works, we just have smaller CO because we are sedentary.

In terms of inflammation from food, personally I didn't find much of a difference, but my Mum did when she cut out dairy and citrus. I think it depends on which foods you have an allergy to, and having autoimmune and allergies together is very common.

Good luck, with both the medical hurdles, and improving your health. It is a hard journey, but worth it.

Iwannabeapunkrockmom

queanmum wrote: »

As a retired RN, I think you should get a second opinion. There isn't any reason for having suspected RA or MS. There are definitive tests for both and good medications to help with symptoms. You need a rheumatologist and a neurologist. You really need to be your own advocate and make them listen to you. Take care.

Having gone through the circus of getting an RA diagnosis, it's not black or white. My rheumatologist calls her speciality, "the gray area" because labs don't tell the whole story. You can have negative ANA and seronegative RA, perfect MRI, and perfect X-rays and still get an RA diagnosis. That being said, the longer it goes untreated, the more likely those tests will show *something*. Many people in my support groups go years without an official diagnosis. Their paperwork will say things like "inflammatory Arthritis" or "suspected arthritis" for years. Some doctors will also do this so that you can get your affairs in order because it's nearly impossible to get decent life insurance if you don't have it already with this diagnosis.

Anyways, all that to say, I wish it were as simple as you say. But with autoimmune diseases, it never is. It's a long road of head aches getting the answers you need. It took me ten years to get a correct diagnosis for Celiac Disease, Lupus, and RA.