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When my specialist told me it's likely I could end up bed bound. I was not expecting that and will fight tooth and nail not for this to happen but it's a scary thought.

December 30, 2016
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Answer Summary

Members rallied around someone whose specialist suggested bed-bound status might be their next stage, sharing stories of fighting back from... Read more

Members rallied around someone whose specialist suggested bed-bound status might be their next stage, sharing stories of fighting back from severe debilitation through adaptive tools, pacing, gentle movement, and sheer determination. Several members described practical strategies that transformed their daily lives, including electric beds, lightweight vacuums, gripper aids, chiropractic care, gentle stretching routines, plant-based diets, and crucially, finding medical professionals who offer hope rather than doom. A recurring theme was that while fibromyalgia can be devastating, becoming bed-bound is not inevitable for most people, and the right combination of self-advocacy, supportive care teams, rest balanced with movement, and refusing to let negative predictions crush one's spirit can lead to meaningful improvement and reclaimed independence.

A MyFibroTeam Member

Hi Alison. I'm gone to try this again haha. I replied an hour ago but it would not send. The reason your doctor may of told you that is when our conditions take over our bodies and depression sets in. Then is when muscles get waisted bones becomes weak. But this can be prevented and reversed to some extent with help from professionalprofessional's by doing every morning gentle stretches exercises before getting out of bed.Forse yourself to get up is the very hard part every morning but please do it. After you get up get your breakfast and medication. Half an hour later get some upbeat music on open a Window where you are. Then get something to support your back and use a long towel if you don't have an exercise band and start lifting your arms one by one with it if you can't do it yourself till muscle build up again and do the same with your legs. Turn your head from side to side slowly letting your ear go as comfortably as you can towards your shoulder and make sure To always breath in with your nose only and suck your tummy in while doing it then sigh out after count of 4 through your lips. This will pump fresh oxygen into your sore tired muscles an rid the stall letting pain leave the body. Once you do all this. Then take just 10 minutes break and have a glass water or none fizzy drink. Get some fresh air even if its just your garden or outside your door. Then just do a very few jobs around your home. Take a rest again no cat naps just rests them after your dinner take things easy for rest the evening. Force yourself to have a warm shower or bath doing some gentle stretches again under the water while doing the breathing. Finish all food by 7.30 an drinks if possible so you won't be hungry later out of Bordem or depression. Take your painkillers. Do something you like.maybe watch a Happy not sad film or drama soap and get to bed before 11 the latest as night and your body Will thank you and your conditions won't get worse an you will claim your body an life back. I do hope this helps you like it did me and lots of others I gave this to in my Facebook health group and my clients in the past. Please let me know how you get on . Big gentle hugs with healing light ☺

December 30, 2016
A MyFibroTeam Member

I have been more or less bedbound and housebound for the last 5 years with no improvement in my condition but please be reassured that this only happens in a minority of cases and there are specific ressons for this aswell. I am surprised that any half decent specialist would be able to predict this happening with fibromyalgia as it so rarely does and also to give u such negative and discouraging information.
I am 41 years old now and I started to suffer with this horrible illness at 18 years old after never fully recovering from bad case of glandular fever. I struggled for many years to keep going and had no choice but to push myself and fight thru the pain and exhaustion etc as doctors knew nothing or little about fibro back then and despite weekly trips to see my GP and referrals to consultants that all said there was nothing wrong with me. I knew nothing about pacing myself, I had no support, no family or friends truly understood or believed what I was going thru and I started to feel as if I was going mad and just stopped trying to get medical help in the end. I managed to keep up the pretencensor about 10 years by working as a secretary until I would get dismissed from my job thru taking too many sick days off work. I estimate that I worked for 30 different companies in this time to make ends meet until I ran out of resources. I finally could no longer work at all by this point, I was physically and mentally exhausted and suicidal. I changed drs and was finally diagnosed and given a name for my illness aged 35. My Dr said that my body was so run down, he described it as like driving a car in third gear for 10 years thru no fault of my own. I was so relieved to find someone that believed my pain and exhaustion and other symptoms, I was not going mad.
Unfortunately for me due to not having the correct diagnosis or support for many years my health continued to decline to where I am today and I am told I am unlikely to ever recover now.
As long as you pace yourself and rest when u need to and look after yourself u will recover. I would change to a more positive specialist and never stop believing u will get better because it is possible with the RIGHT help.
If only I knew all those years ago what I am telling u now my life would probably be vastly improved.
Good luck. Remember the RIGHT help.
Juliax

December 31, 2016
A MyFibroTeam Member

A couple of winters ago I was pretty much on the couch or in bed. If I was lucky I could he out of the house for a few hours but would take me about 3 days to recover. It was awful! I rested for about 6 months and changed my Dr cos he just made me depressed everytime I saw him! 1.5yrs later I am about to start working 20 hours a week! I pace myself and still am sore but I have learnt to manage it. Winter is bad for me, I know I get hit hard in winter but with the help of a good Dr, occupational therapist and physiotherapist I survived winter and came out stronger!
My specialist said there is hope! He told me about a lady he saw who had fibro and when he first saw her she was in a wheel chair, with help, 6 months later she was walking!!! You need medical people around you who are positive and don't make you depressed when you go to the drs! Don't give up hope!

December 30, 2016
A MyFibroTeam Member

Thank you Bethany, this is what I like and need to hear. To remain positive and if others can do it. So will I . Bless you, reading an inspiring winner is great to read. Thank you. Ali

December 30, 2016
A MyFibroTeam Member

I have learnt the most important thing for me is to keep moving! Even if I'm crying through the pain!

December 30, 2016

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