COULD YOU END UP IN A WHEEL CHAIR WITH FIBROMYALGIA??

[BOO35]

I got diagnoised with chronic fibro in 2009 suffered with its for years before diagnoises... My life took a turn,I attened the pain clinic he told me I would end up in a wheel chair if I didn't chill out is this tru?.. I am nearly 35 and have 3 children and a husband with Metabolic syndrome, when can I chill out.. I do suffer with P.T.S.D, Diabetes type 2, T.L Epilepsy, Inflamed bladder, Kidney problems,IBS, Astma & alot of infections, the list goes on... I wake up thinking another day another grind, but I plod on, what choice do I have it gets me down and I cry alot people ask me whats wrong and I say oh nothing just having a moment, how can you tell someone something if they dont relate, I have even been looked at like dirt in the past so I am weary..... Everyday is different living with chronic fibro.. I have even been tested for Lups, which took 2 years to get the appointment for, had MRI scans Xrays the lot... My body is very stiff, aches all the time, shooting pains as well and there intense makes me grit my teeth, does anyone else get these?? I walk like a robot sometimes and my short term memory makes me feel like my cheese is sliding of my cracker, I would be having a convo, then forget what I was talking about so frustrating :/... Does anyone else get this with their fibro?... I know I have rambled on and I'm sorry but got to ask does anyone else get these symptoms with fibro.. 1...Wakes up in the morning feeling like you had 20 shots of vodka in their sleep? 2... Walks robotic due to the stiffness and pain? 3....Clicking and snapping bones constantly? 4... Cleaning the house feels like you have had 2 rounds with Mike Tyson? Any kind of chore.. 5.... The shakes or jitters, hot then cold? I would love to hear from other fibro patients I feel so alone with the illness... All I really know about having chronic fibro is that it hurts and would not wish it on my worse enemy... Look forward to hearing from you kind regards Dayna

[LindseyMid]

Hi Dayna

You may find this info on Fibro helpful:

fibroaction.org/Pages/About...

Fibro is a chronic condition, so it's not possible to have Fibro and not have a chronic condition.

In response to your questions....

Waking up unrefreshed is typical of Fibro. The issue is that with Fibro we cannot get enough stage 4 sleep, which is the deep, restorative sleep our bodies need. Our brains jump us out of deep sleep as if we've been startled.

Stiffness is common with Fibro. Myofascial pain is a common issue with Fibro, but is also a condition in its own right. It causes muscular stiffness, pain and weakness, shooting or burning pains and can cause other symptoms such as nausea and recurrent or chronic headaches or migraine. You may be able to feel hard areas of muscle or "knots" (myofascial trigger points) on muscles that are painful if pressed.

Clicking joints, etc can be linked to myofascial pain, but also with hypermobility, which is considered to be a risk factor for developing Fibro (so the 2 often co-exist).

Struggling with chores and being intolerant of too much activity in one go are common issues with out-of-control Fibro. This article might help: fibroaction.org/Articles/Do...

Poor temperature control is also typical of Fibro. The Autonomic Nervous System controls those bodily systems that we don't think about (temperature, blood pressure, the "fight-or-flight" response, etc) and it is this system that is badly affected with Fibro. With Fibro, the Autonomic Nervous System is over-stimulated - it's like the "fight-or-flight" response has got stuck on at "HIGH" which causes a lot of changes in the brain, but also means basic things like temperature control are affected.

HTH!

[LindseyMid in reply to LindseyMid]

And yes, some people with Fibro are in wheelchairs. But if they do not have another condition that could necessitate a wheelchair, this would typicaly mean their Fibro was poorly managed and out-of-control. Fibro can be extremely debilitating, but it is treatable. Accessing and utilising effective treatments is often an issue though.

[Craig1962 in reply to LindseyMid]

Hi i am craig .the burning pain of exhaustion. I can't hold myself up. If I push through it I will drop and do the old fish out of water routine .the pain is so bad.I am getting worse every day. I think I might have to be in a wheelchair soon. Any body out there I can talk to.

[Alice-crohns in reply to Craig1962]

Hi Craig I’m feeling your pain. You are not alone believe me and although I wouldn’t wish this condition on anyone the fact there’s someone out there feeling as isolated as me is some comfort. I’m writing to you at 4.30 am classic fibro sleep disturbance. I’m at a really low point at the moment totally debilitated by this chronic fatigue and wandering am I going to end up in a wheelchair. I definitely have good and bad periods but when I feel like this I find it hard to remember what living a normal life is like.

Hi very fortunate in so far as my husband is my full time carer and is very understanding and compassionate but sometimes I can see the frustration in him when doing the most simplistic of tasks feels like I’m climbing a mountain. I also have Crohn’s disease which thankfully is under control at the moment. I have a potent drug they give me through a drip once every six weeks but unfortunately it has no bearing on my Fibromyalgia symptoms. Feel free to message back even if it’s just to moan about it to someone who knows what your going through. I have a very supportive best friend who is always there for me but I’ve lost many friends because people don’t just get it. Some days I wish I had a sign on me that explained to people that I’m not lazy or pathetic I have a chronic condition that I don’t seem to have much control over. I hope this helps in some small way. You are not alone and I hope your symptoms improve. Classic Fibromyalgia I have just sat here for 2 minuets trying to think of the correct word to use another irritating factor. Take care x

[Craig1962 in reply to Alice-crohns]

Thank you for your reply it does mean a lot

[BOO35]

ty hun

[Hidden]

My fibro has been bad but never enough to leave me in a wheelchair ... I was in a wheelchair for 3 months when I was first hit with arthritis on the top.. At 43 .... But I got out of it progressed to a walking frame now I use sticks and a mobilty scooter to go out... The best thing I found to help with fibro was very gentle exercise as often as I could manage.. Since I got arthritis and less mobile my fibro is Definately worse

Hope that helps

VG x

[ladymoth]

Hi Dayna,

You have a lot of other things going on besides fibro, and you sound very depressed. It might be an idea to write a list of your problems and take it along to your GP so he can see where you're coming from. If all your conditions are well managed, life might be a bit easier for you!

I do hope you can manage to get some relief before too long, as I can see that things are pretty difficult! I don't expect you'll end up in a wheelchair - some people do, but it's usually because they have arthritis or some other condition as well. Take care, and try to get some help from your GP.

Love from Moffy x

[Fermerwill]

I use a wheelchair when I would have to walk a while .I can walk with two sticks but not far too painful I feel this let's me be involed in my family life more but even using wheelchair is painful can not propel myself due to pain in arms ,hands and uper body ah well just have to get on with the life dealt to me . Was told when first told had this that it may lead to being in wheelchair best wishes and big hugs

[Carolinee71]

Hi. I am not in a wheelchair at the moment I make do with taking pain med's as my hip are usually the worst part of me..

I went to Westfield shopping centre with my daughter and got a wheelchair to borrow for the trip, as my hips were hurting a lot and the pain meds only helping a bit.

If you ask me how I felt using it I would answer you straight away, I will never use one again, I felt like a child being taken to see the things the grown ups wanted to see never taken to where I wanted to go

But since the shopping trip, my mum came round and my daughter said what a great time she had had. The best thing was not worrying about her keeping me walking and causing me too much pain and it meant we stayed for longer.

So yes I can see using one again not for me but so everyone enjoys the shopping trip

Good luck Caroline xxx

[Craig1962 in reply to Carolinee71]

Thanks your story made me feel better.

[BOO35]

ty all for your reply very mostly appreciated...There have been some mixed response, every fibro patients are different on how it effects them.. I have it mostly in my hips & legs... I have recently had an xray on my hips and waiting for results.... I am under the Mental Health care team Moffy due to trying to take my own life a couple of years back... I was in a dark place i came out of it and surving for my kids and husbands sake.. If it was not for them I dont know where I would be... I am so pleased I found this website and can talk to other people who knows what fibro is all about.. Ty all its good to know I am not on my own.. Hugs to you all xox

[rainbowdancer]

Hi Dayna I had to use a wheel chair because my fibro became acute and I also need two new knee's and poss hip re-placement,I hated it and felt aweful as my daughter was a size 8 trying to push me around, twice her weight....she however did try to make light of it, by running to get up a slope in the hospital,or when we went on holiday.....but I still hated it! .......Then I went onto Loyds chemist disability aids and bought a little red scooter...best thing I ever did £350 brand new display model

Now although I am very poorly most of the time with other things inc my Fibro ,I go to the hospital and my scooter folds down in the boot, 4 pieces and it is together and off I go. I use it to go to the Dr drive straight into his surgery,I go to see my Mum when I am well enough in a nursing home and I can wiz around the home on it. I have even been to the pub with my daughter on one occasion and as my scooter is small it goes through a single door. I feel more in control of my own life now. I still cant go out much but when the summer comes I will be able to do more.

Even if I do ever walk again I will use it to go round the shops because I never could go shopping as my back is far too painful,and a walking stick pulls my back and I go into spasms.

On a light note! ...I called my scooter Indie when I first got it as it made me Independent ,then when Loyds bought my new Massage chair the guy said how you getting on with Leo,I said "Who" and he said your little red scooter,it has his name printed on the number plate,we did laugh x

Well I hope you soon get sorted out,and feel a bit better x

Sending you gentle hugs and smiles x ((((((((((((((((((((((( )))))))))))))))))))))))))

Rainbow x x x

[samantha79]

Hi Dayna,

Although your post is 7 months old, it really compelled me to reply. I hope this finds you feeling better and having more control on your pain and fibro fog. To answer two of your questions; yes you can end up in a wheelchair if the symptoms get severe enough and yes there are periods of fibro fog for others. I am 34 and have been diagnosed since I was 23. I started showing symptoms when I was 17 when I was pregnant with my son but the Dr' s passed it off as my son sitting on my sciatic nerve. At 21 they assumed the same thing when was pregnant with my daughter. At 22 I had to get a partial hysterectomy due to PCOD. That's when my symptoms started to really be apparent. A year later they diagnosed me with fibro, DJD and O-arthritis. At that time I had 6 of my 7 kids (two biologic and 4 adopted). I was a single mother working 80 hours a week and thought I had no possibility to slow down. I took the meds they gave me, got cortisone shots and learned relaxation techniques. This allowed me to continue working for another ten yrs. During that time my "bad" days usually occured when it would rain a lot or was really cold. Then last Labor Day weekend my kids and I thought I was just having a couple of bad days due to the heavy rain and recently adopting a newborn. 48 hours later I was in CCU for a week. The specialists could not figure out why I had sudden numbness and weakness in my lower extremities. I have used a walker in the house and wheelchair outdoors ever since. I have not been able to work since because even when I feel good enough to sit in a chair all day the fibro fog is still severe enough that I can't concentrate on anything. My older children have to help me raise my younger children. I applied for disability but my lawyer said I will probably need to appeal several times before approval due to my age and college degrees. The doctors have figured out it is only the fibromyalgia, O-arthritis and DJD, but that only makes it harder for people to understand. I have many family members and acquaintances that have told me if I wanted to walk or work I could and the pain was only in my head. I can't tell you that it will get easier with time but I can tell you that you are not alone. You will have your good days and your bad days. My Dr's best advice was on your bad days find things to do to relax, even just a hot bath and yoga, and on your good days try to enjoy them and don't overdo yourself because that will just create more bad days. I know that was a pretty long answer but I do hope it helped you.

[Psion]

I know exactly how you feel. I was diagnosed with chronic fibromyalgia back on 9th September 2013. It's a day I will remember forever for changing my life. I'm on powerful painkillers and anti-depressants and my condition is deteriorating. Truth be told my doctor isn't quite sure if I have fibromyalgia that I was diagnosed with or Myalic Encephalopathy (M.E) but I have been told I will end up in a wheelchair.

[ladysian]

I hate to give this answer but YES, IT HAPPENED TO ME, I've had fibro my whole life, it runs in my family, I'm thirty six but I've needed the chair since I was thirty two (well even before then but that's when I gave up my pride and spoke to my dr to get one prescribed).

Here's what you need to do to try and not end up in one:- find ways to do as your drs tell you, I know it's hard, I have other major health problems too, but stress makes us much, much worse, so find time for you, have a massage, have a drink (in small amounts) and use the forum here to find information, support and somewhere to really vent to people who really do understand what your going through.

Your hubby is a big boy, he needs to remember you have major health problems too and he needs to help you out to stay as stress free as possible, his illness, your health problems, your kids, your finances and the upkeep of your home are not only your problem or responsibility, they're his too, and get your kids to help you as well, you're not your families slave or maid, please remember that YOU are what's important,

Remember the wheelchair is a worst-case, long term scenario - you may never get that bad, but if you do, don't be too prideful to get one, better to have it and use it and then have good days where you don't need it than putting up with the pain, causing damage to yourself and ending up needing it all the time (believe me I know), and even before you get to the wheelchair stage there are crutches and other aids you can try that may mean you don't ever need the chair...

Good luck

Sian

[angierose]

My gosh! It's like reading my own story! I have everything you just mentioned!! I have my new electric wheelchair arriving today. I am only 31.

[ChronicallyRachel in reply to angierose]

angierose How is your powerchair coming along? What led you to getting one?

[Fibromyalgia111]

I am at witts end with fibromyalgia! All the symptoms you explain sounds just like me. Everyday is a struggle and when it does calm down I try to catch up on house work and laundry then find myself in excruciating pain again. I am so scared of ending up in a wheel chair. I was always an active person and now I'm afraid to do anything that could put me in a horrible flare. Is this how you feel?