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sunshinedean
Posts: 82 Member
I was diagnosed with CFS 19yrs ago ~ I went from being a single mom working 2 jobs (senior citizen home & daycare) to not being able to work at all. They listed Mono then CFS and said I would just have to adjust to it. I found that there are highs & lows with it ~ the highs ~ I worked the lows I got real sick with it which led to being diagnosed with IBS, GERD, Asthma and Fibromayalgia. I was sent to a psych dr to "help me accept the fact I would never work again" I WALKED OUT!!
After all these years of highs (fully functional ~ wife,mom,work) and lows (able to do VERY little) I have found that when I eat healthy and try and stay active.....I do better. I have done alot of research White flour and processed carbs make fibro/CFS worse and I change my sttings to be 30% carbs; 30% fat; 40% protein tnad "aim" for that each day as suggested by the researchers. It has truely helped!!
Catch 22 ~ we need to stay active however if we overdo it we will not be in any shape to be active for a while afterwards. Gives a whole new meaning to after exersize soreness!! LOL I have found my glitche that works for me "water" I work out in the water it takes the shock out off of the muscles ~ I tread water, water jog, calestenics in water, some laps swimming but it wears me out fast. Walking has helped too but I have to do little walks to build up endurance to the mile or 5K.
Eating healthy ~ water work outs have helped me feel better, and lose 28lbs so far since the end of May. (I also found over the years of weight being up & down~ I was in less pain and fatigue when I was carrying less weight around) Now that being said ~ I still have days (2 this past week) that I am not able to function.....this however frustrating that it is, is getting better so I look at what I CAN DO and not what I CAN'T!!
I started this group for "CFS / Fibromayalgia Winners" ~ I want it to be positive support for each other we have enough of the suffering.....we are going to be winners together!! How about it? Who's in??? ....be patient with me this starting a group is a new adventure for me!!
After all these years of highs (fully functional ~ wife,mom,work) and lows (able to do VERY little) I have found that when I eat healthy and try and stay active.....I do better. I have done alot of research White flour and processed carbs make fibro/CFS worse and I change my sttings to be 30% carbs; 30% fat; 40% protein tnad "aim" for that each day as suggested by the researchers. It has truely helped!!
Catch 22 ~ we need to stay active however if we overdo it we will not be in any shape to be active for a while afterwards. Gives a whole new meaning to after exersize soreness!! LOL I have found my glitche that works for me "water" I work out in the water it takes the shock out off of the muscles ~ I tread water, water jog, calestenics in water, some laps swimming but it wears me out fast. Walking has helped too but I have to do little walks to build up endurance to the mile or 5K.
Eating healthy ~ water work outs have helped me feel better, and lose 28lbs so far since the end of May. (I also found over the years of weight being up & down~ I was in less pain and fatigue when I was carrying less weight around) Now that being said ~ I still have days (2 this past week) that I am not able to function.....this however frustrating that it is, is getting better so I look at what I CAN DO and not what I CAN'T!!
I started this group for "CFS / Fibromayalgia Winners" ~ I want it to be positive support for each other we have enough of the suffering.....we are going to be winners together!! How about it? Who's in??? ....be patient with me this starting a group is a new adventure for me!!
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Love that you have created this group! Thank you, what a fantastic idea
I have suffered with poor health for nine years and was finally given a diagnosis of CFS in 2006. After that I really stopped taking care of my health and weight, ate rubbish (lots of takeaway or processed food) and did very little exercise.
Joined MFP recently as I really want to be the best I can be and be healthy enough to finish my degree and land my first teaching job!
Best Wishes Mikaela xxx0 -
Hey there, I love your positivity and admire your determination. I just joined My Fitness Pal this week, and you creating this group just now is too much of a coincidence, if you know what I mean!
I was diagnosed with CFS in 2010, although I was struggling through for at least 2 years before that. I've put on loads of weight because of it. I used to be really active (like so many CFSers) so that didn't help, plus other aspects of this illness which makes it either really easy or really difficult, if you can't stop losing, to put on weight (depending on the person, but usually the former).
I am determined to recover and well on my way with all of the improvements I have made. You are so right about white flour, sugar and refined carbs in general being bad for CFS.
Anyway, thanks for starting the group!0 -
so sorry to hear ur story but im glad u made a group my mother and aunte have fms and my cousin has it now also i see how hard it is,i have all the symptoms for it but when i go to gp the dont test me for it so ive kinda gave up n just follow advice thats given to my mum ,i know that eating healthy is very important so brillant on joing mfp n making a support group i will tell my family to join your group also thank you xxxxxxx0
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Hi, I have believed for years that I have Fibromyalgia, but my GPs don't seem to be picking up on it. It's so frustrating! I've lost 10lb since joining MFP, but each time I exercise, I feel exhausted for the rest of the day. I've been doing the 30 day shred, now on level 2 and I walk and cycle when I can. i definitely agree with the swimming/water exercise as it help me, too.
I can manage the pain mostly as I've got used to living with it, but it's the tiredness that gets me down. I've never looked into what foods aggravate the condition and I'm very interested in what anyone has to say about that. I've read about the sugar and white bread on here, but is there anything else i really should be avoiding please? I guess i should do some internet research, but, as I haven't been diagnosed, I don't want to look too deeply into it, if you know what i mean.
Thank you for your motivation' it's good to know that exercise and healthy eating don't make it worse! I look forward to supporting and being supported in this group. Thank you xxxx0 -
Hi, I have believed for years that I have Fibromyalgia, but my GPs don't seem to be picking up on it. It's so frustrating! I've lost 10lb since joining MFP, but each time I exercise, I feel exhausted for the rest of the day. I've been doing the 30 day shred, now on level 2 and I walk and cycle when I can. i definitely agree with the swimming/water exercise as it help me, too.
I can manage the pain mostly as I've got used to living with it, but it's the tiredness that gets me down. I've never looked into what foods aggravate the condition and I'm very interested in what anyone has to say about that. I've read about the sugar and white bread on here, but is there anything else i really should be avoiding please? I guess i should do some internet research, but, as I haven't been diagnosed, I don't want to look too deeply into it, if you know what i mean.
Thank you for your motivation' it's good to know that exercise and healthy eating don't make it worse! I look forward to supporting and being supported in this group. Thank you xxxx
Hi! If you think you have fibro you have two options:
1. Go to the G.P. and insist that you see a rheumatologist with experience in CFS and/or Fibromyalgia. This is helpful if you need tablets and a decent physiotherapist (who they can refer you to) to help deal with the pain.
2. Do research yourself and find what works for you. This would be beneficial for helping to prevent wasting energy going backwards and forwards to the doctors if, ultimately, all you will be left with is the label of 'Fibromyalgia' rather than any help in dealing with the condition.
I have done a lot of research myself and am on my way to getting my life back. If anyone wants my advice you can just send me a private message and/or add me. I am happy to help anyone who is trying to get their life back on track and is interested to know what's worked for me.
Also, I just want to add that as part of my journey I have discovered that juicing is a great addition to the diet for the characteristic overwhelming fatigue and brain 'fog'.0 -
A few of you have said that your GP has not "formally" diagnosed you with something you believe in your gut you have...... I say YOU know YOU best!! Sure we rely on Drs for alot, but you know what you are facing everyday better then someone who spends 5 min with you. If you have the symptoms and you want to make them more manageable then by all means gather all the information you can about it and make steps to make your life better for you!! Having a Dr diagnos you formally will not change your symptoms ~ only what you put into practice can. Learn as much as you can ~ share that info with others ~ find out what works best for your body to make you thehealthiest you you can be!!
What kinds of things do you want to get out of our group? feedback on what you are looking for so we can start individual threads on that subject......like "food triggers ~ what helps/what doesn't" stuff like that....
together we can make a brighter tomorrow for ourselves!! :flowerforyou:0 -
This is a great message board and everyone seems to want to try everything they can to be as healthy as possible. That's great because too many times i've seen people diagnosed with FM or CFS who don't want to bother. They curl up and gather sympathy. Well that's definitely not me! I was diagnosed 10 years ago and pushed through it, working and raising a family until finally... I couldn't. Two years ago I went off on disability and can't seem to find my way back - but I keep working on it. In addition to FM and CFS, I have also had multiple bowel surgeries including having my colon removed so needless to say I have other issues at work. But my weight fluctuates 30lbs depending on if my guts are working or not.
The key to staying sane? No processed foods. Ya, sure, cheat once in awhile, but try to make every single calorie that you put in your mouth have nutritional value! Also, DON'T overdo it on your good days and you really will have more good days. And on your bad days? Let yourself rest, be taken care of, and try not to feel guilty about it (that's the hard one for me). Use your support system. Wouldn't you do the same for them? I've tried EVERYTHING ever suggested towards having less pain and more energy so I'd be happy to answer any questions. I guess you could say I'm a pro at knowing what is out there and what works for me.
Keep positive! Attitude is everything with these illnesses. Yes, you can still have a life!0 -
This is a great message board and everyone seems to want to try everything they can to be as healthy as possible. That's great because too many times i've seen people diagnosed with FM or CFS who don't want to bother. They curl up and gather sympathy. Well that's definitely not me! I was diagnosed 10 years ago and pushed through it, working and raising a family until finally... I couldn't. Two years ago I went off on disability and can't seem to find my way back - but I keep working on it. In addition to FM and CFS, I have also had multiple bowel surgeries including having my colon removed so needless to say I have other issues at work. But my weight fluctuates 30lbs depending on if my guts are working or not.
The key to staying sane? No processed foods. Ya, sure, cheat once in awhile, but try to make every single calorie that you put in your mouth have nutritional value! Also, DON'T overdo it on your good days and you really will have more good days. And on your bad days? Let yourself rest, be taken care of, and try not to feel guilty about it (that's the hard one for me). Use your support system. Wouldn't you do the same for them? I've tried EVERYTHING ever suggested towards having less pain and more energy so I'd be happy to answer any questions. I guess you could say I'm a pro at knowing what is out there and what works for me.
Keep positive! Attitude is everything with these illnesses. Yes, you can still have a life!
You are soooo right attitude is everything!!! Is it frustrating ~ YES; does depression try to rear it's ugly head? ~ Yes; BUT there is no way in God's green earth that any illness is going to take away my happiness!! So I surround myself with positive people and I do what I can when I can ~ and pray the God helps me accept the rest!!
I too have seen alot walo in self pity; I have to admit over the years I have had a pitty party or two when I couldn't do something I felt I should be able to do.....I NEVER saw any positive come from any of those pity parties in fact I always felt worse!! So I wanted a group that would encourage each other daily, share things that worked for them and things that didn't; issue challenges that we could achieve and feel proud of withoutfeeling less then the rest of the group because we couldn't exersize the way everyone else did. A place where we can GROW and become healthy together!!0 -
The everyday things can seem overwhelming at times. I know some days just the thought of having a shower and having to hold my arms up to wash my hair seems more than I can manage. So if you don't have to do it, don't. Use your energy for the things you absolutely have to do and learn to put aside the less important things. I function about 6 hours a day. That's all I can be upright and useful. So i plan my days around that window. I stay in bed until the last minute or head back to bed early to prepare for the next day. I take breaks in my lay-z-boy or lie in the sun so the heat can beam down on my legs and give me some relief. And I still manage to take care of my family, although truth be told my partner is a phenomenal help, as are my kids and I'm so incredibly grateful for them.
What I'm saying is ya, it sucks. It hurts and we're all exhausted. So what? So work around it. Have your pity party days and then move on. Oh ya, and remove ALL toxic people from your life! You know, the ones that always stress you out or leave you feeling crappy about yourself? Get rid of them and lift that weight off your shoulders. Mental strength is the number one requirement for living a healthy happy life with FM and CFS.0 -
Hello there!
I have had CFS for 16 years - it felt like it destroyed my life - had to give up Uni and my dream career, lost my late teens/twenties when my friends were out partying and finding themselves I was in bed or being experimented on by 'specialists' who wanted to write the next amazing paper on cureing CFS at one point I was anti psychotic meds?!?! When I should have been starting my career as a teacher I was listening to a councellor tell me I had a black aura and should smile more and all but one of my uni friends had deserted me - they couldn't handle seeing me go from an active person to dragging myself round with a walking stick who fell asleep mid conversation (not sure how they thought I was handling it!)
But I refused to be beaten - I am stubborn according to my doctor and after 18 months I dragged myself back to Uni - I finished my degree - still couldn't do the job but hey I wanted to finish. After that I fought and got and kept a full time job - always feel I have to prove myself more than my 'healthy' colleagues - got used to having no social life or life really - one step to far and I was in a heap for weeks.
But now 16 years on I am still here, still fighting - the good days have got better and last longer, the bad days last shorter, the headaches are pretty much under control and the limits I live under are not as strict as they used to be. Yeah I can still over reach, I can still put myself in bed for a couple of days/weeks but I feel in control enough to start fixing the damage done by the past years of low exercise and the rubbish diet which resulted from the feeling there was only one way I could reward my self.
Have been going just over a month - have had a warning shot or two fired at my by my cfs but so far it is behaving and I am getting back into control - I have to say it is very empowering and I am loving feeling in control - the danger is I will push too far so I am trying very hard to pace my self!0 -
Hi! I am Cheryl....I was diagnosed with Fibro in 2001 after my first daughter was born. Looking back I am SURE I have had it a LOT longer than that, but Fibro wasn't "accepted" back then.....Sadly, I am thinking my youngest DD has it...she is 9 and exhibits a LOT of the same symptoms I had back then as a child. :-(
I haven't found "triggers" except heavy house cleaning, (not sure why, but the repetitve motion of mopping, etc) and certain exercising. I have started C25K (running program- never have been a runner) and surprisingly that does NOT cause a flare up!! I have tried Lyrica, worked great for a while, then started causing leg pain and Cymbalta- broke out in hives, so currently I am taking nothing.
I am a single mom now, so have to work to support my girls.....I am looking forward to this group and sharing a common bond!0 -
Hi,
I am Marti and have been struggling with Fibromyalgia and Polymyalgia Rheumatica for the past several years. I was finally diagnosed by my Primary Care Doc, Everyone should have him. He sent me to a rheumatologist, who confirmed the fibro, and then did blood tests for Sed Rates found they were high so they put me on Prednisone, only thing used to treat Poly, Lyrica, Celexa, and told to lose weight.
Not an easy task with prednisone, I have gained over 50 lbs since taking the drugs and am really wanting to get well at least as well as possible with these challenging diseases. It has been suggested that I go forward with bariatric surgery for my well being and to correct several issues that are popping up from the extra weight.
I guess it is like a Rubic's cube, But I am determined this time to get some of the weight off before doing anything so drastic. Thank you for the opportunity to be on CFS/Fibromyalgia. I have done much research on this and am trying my hardest to get it to ease up without adding more drugs. I just got out of the hospital after a 3 day stay to rule out having a heart attack but it was the Fibro and Pmr going out of whack again,
My sugar level was out of sight and I have not been diagnosed with Diabetes so before that happens I wanted to take this positive step. I have daughters that are concerned and Grandchildren I really want to romp with.
Hope to communicate more with all of you . Have Cool day we are in the high 90's and I am hiding out.0 -
Prednisone is a wicked drug! My mom was on HIGH doses of it for a long time and is now a diabetic from it. She is finally off of the drug, but the effects have been long lasting. I hope they find a way for you to be off of it.....0
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Hi I'm Blaqheart nice to meet everyone.
I was diagnosed with Fibro in 2004. I may have it, but it doesn't have me.
I manage mine on my own using a variety of natural healing modalities. I believe the body is very capable of healing itself if we get out of the way and allow it. I don't and won't take any prescriptions or even over counter and haven't for nearly 6 years. I'm not willing to take the risk because to me none of them are worth it.
I am very active. I work out at my gym 3 times a week using weights. I lift heavy up to 40 lbs.
I'm also following the program "The Butt Bible". I have now completed week 2 for level 1. I credit this to actually curing my long time back pain! I noticed a big difference halfway through week 1.0 -
Hi all. I'm glad to see such a great group here - it's really inspiring!
I had 'growing pains' throughout my childhood and was incorrectly diagnosed with rheumatoid arthritis when I was 19. Turns out I had child onset osteoarthritis and fibro. I've also always had migraines and tension headaches - I was 15 when I got my first prescription for muscle relaxers. Crazy, right?
In the past I would try everything and nothing seemed to help my chronic pain and headaches, fatigue, brain fog, irritability... I felt hopeless and since no matter what I did I wouldn't feel better and would usually feel worse, I eventually did nothing.
My new rheumatologist finally put everything together and on top of a few other issues it turns out I'm gluten intolerant. I cut out the gluten and the veil lifted! I still get flares and pain/migraines here and there but it's not a constant, every single day of my life issue anymore. I was working on getting on disability and have scrapped it and am amped to be going back to school in the next year or so. I'm also set to lose weight that gluten and a few of my previous medications were making impossible to get rid of.0 -
Thank you , I have a minor victory today, my rheumatologist agreed to drop me from 10mg down to 7.5 mg and work me down. I am going to work on her getting me off lyrica. her call made my day. So sorry to hear about your mom, Bless her heart. I really hope that I will be in time getting off of it.0
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Hi,
I am Marti and have been struggling with Fibromyalgia and Polymyalgia Rheumatica for the past several years. I was finally diagnosed by my Primary Care Doc, Everyone should have him. He sent me to a rheumatologist, who confirmed the fibro, and then did blood tests for Sed Rates found they were high so they put me on Prednisone, only thing used to treat Poly, Lyrica, Celexa, and told to lose weight.
Not an easy task with prednisone, I have gained over 50 lbs since taking the drugs and am really wanting to get well at least as well as possible with these challenging diseases. It has been suggested that I go forward with bariatric surgery for my well being and to correct several issues that are popping up from the extra weight.
I guess it is like a Rubic's cube, But I am determined this time to get some of the weight off before doing anything so drastic. Thank you for the opportunity to be on CFS/Fibromyalgia. I have done much research on this and am trying my hardest to get it to ease up without adding more drugs. I just got out of the hospital after a 3 day stay to rule out having a heart attack but it was the Fibro and Pmr going out of whack again,
My sugar level was out of sight and I have not been diagnosed with Diabetes so before that happens I wanted to take this positive step. I have daughters that are concerned and Grandchildren I really want to romp with.
Hope to communicate more with all of you . Have Cool day we are in the high 90's and I am hiding out.
I have been on steroids more then I care to!! I hate it and beside the weight it effects my mood as well ( I become very intolerant of others and extremely irritable) I know when Dr wants me to take it I have no choice but I fight him every step of the way. Meds there in the beginning were ridiculous I had a tray of meds and I was a zombie! I did a dangerous thing one day and threw them all away ~ um some you need taken off slowly ~ I survived and changed Drs. One that understood me and what I was facing. He doesn't prescribe anything unless it is vital and he knows that I would rather live in pain then be on anything that takes me back to the zombie days. I did tell him of my plans for diet and exercise and he is monitoring me ~ SLOW & Steady I am grasping my health ...... I may never be "cured" but I will be living the best life I can.....NOT being controlled by any illness or medication!! Every one of us is different; so PLEASE communicate with your DR ~ if he/she isn't listening to you ~ find one who will!! Life is tooo short to be wasting any of it!!0 -
Hi! If you think you have fibro you have two options:
1. Go to the G.P. and insist that you see a rheumatologist with experience in CFS and/or Fibromyalgia. This is helpful if you need tablets and a decent physiotherapist (who they can refer you to) to help deal with the pain.
2. Do research yourself and find what works for you. This would be beneficial for helping to prevent wasting energy going backwards and forwards to the doctors if, ultimately, all you will be left with is the label of 'Fibromyalgia' rather than any help in dealing with the condition.
I have done a lot of research myself and am on my way to getting my life back. If anyone wants my advice you can just send me a private message and/or add me. I am happy to help anyone who is trying to get their life back on track and is interested to know what's worked for me.
Also, I just want to add that as part of my journey I have discovered that juicing is a great addition to the diet for the characteristic overwhelming fatigue and brain 'fog'.
Thanks Ellevated! I am taking in all the advice on here. What a fab group. I am starting to cut out lots of the foods listed on here NOW! I will go to my GP again when I feel that I can't cope any more and I've done all I can to help myself. Thanks so much for the advice. I'll add you if that's ok?0 -
Thank you , I have a minor victory today, my rheumatologist agreed to drop me from 10mg down to 7.5 mg and work me down. I am going to work on her getting me off lyrica. her call made my day. So sorry to hear about your mom, Bless her heart. I really hope that I will be in time getting off of it.
Awesome! My mom was on the prednisone for other issues- she still has tons of health issues, but really tries to do as much as she can. She is a huge help to me with my girls since I am a single mom.....0 -
Seems like I've had CFS/Fibro forever. I've been on disability for it since 98. I find I feel 100 times better when I watch what goes into my body and make sure I don't overdo.I also take a ton of vitamins and supplements. They've been a huge blessing.0
