Fibromyalgia Action UK

Sorry it's been ages since my last post!

Hi all tried to write a post 2 weeks ago but my signal wasn't very good in hospital.

Was admitted to hospital on Friday 4th April at 3am as I was suffering from chronic kidney pain. I had got to the point my medication wasn't working either was a hot bath or my electric blanket.

I ended up ring 111 speaking to someone and answering millions of questions. Then I had to wait for a doctor to ring anyway.

Was in Sunderland Royal Hospital for 10 days, had to see physio and OT before I was allowed to come home.

Physio said I was okay to come home even-though my legs kept giving way. 'Its safe for you to go home' hello no it's not if my legs are giving way... It's cause you have been in bed... Nothing to do with it..

I have an appointment with my consultant at the end if the month and I really feel sorry for him.. As I'm going to put a complaint in about the nurse... As she told me that I shouldn't be on benefits as I'm capable of working (not her place to say that at all!) and sent me home with a UTI as I've been on antibiotics.

I have give from being on 10 tablets a night to 24+ a day and also on a controlled drug Oxycodone and Oxynorm liquid 5ml every 2 hours. I was taken to accident and emergency the other night cause my feet are swollen to the have a paramedic to turn round vas say they look normal to me... (The reason why I was taken to hospital was because the people I rang on 111 were concerned because I had pins and needle and numbness down the side of my leg) so they said I needed to be taken to the hospital urgently. However that call was at 12am I didn't get to the hospital till 3:40am.. But was. Discharged the same night.

But I have to say the lady I saw from OT, was a lovely lady called Tonee.. Who has also agree a wheelchair would also benefit me for when I'm out and about as I keep falling over and keep falling over inside my flat, so I have an appointment with wheelchair services on 29th April so I will let you know how I get on.. I did try and see social services to see if I can get some support and they refused because they only saw me last year?! I'm obviously not that important enough to need extra support.. The nurse (who is I ever see will let it off me) turned round and said if you want extra support you will have to pay for it.. My reply AND??

But looks like I'm going to have to go on the sick on this medication. Cause when I take it, it makes me want to sleep. But I was also informed that I should be on high care and high mobility with having kidney disease. So I might contact the C.A.B about it while I'm contacting with about debt relief "kill 2 birds with 1 stone as they say" as I'm hoping to get a wheelchair. To try and get highest rate mobility so I can get a car :)

Means once I need to be moving on from the ground floor flat I live in now I can try and apply for a bungalow as it be easier if hopefully, il have my wheelchair and be using it more often, my plan is get a quickie wheelchair (if someone on here has one would love to no which one and what your option is about them please). Is to use it when I'm out and about :) instead of popping pills and/or having to go home cause the pain is to much for me.

So I'm currently sitting at mine with abnormal FAT feet :'(

I was going to put a pic up of my swollen feet but can't never mind. I can only move 2 toes on each foot... My big and second toe in :(


10 Replies

sorry to hear all that Susan.

could you ask whoever said about high rate mobility to write you a letter of support?

social services cannot use that as an excuse, ask for someone in authority.

it's the OT who can assess you for adaptations and equipment.

ask the CAB to come out and give you some advice on benefits, adaptations and applying for a bungalow.

if you are over 50, you can also ask age uk.

let us know how you get on.




Hi Hamble99b,

Yeah I might once I have my wheelchair fingers crossed I get it..

As I really do think il come on alot better once I receive it plus, I'm not allowed to go bk to voluntary work until I have stopped falling over and I have been out about a week and I haven't stopped yet and don't think I will.

Yeah I think I will contact the C.A.B. about benefits. Means if I get high mobility I can look at getting a car & blue badge for myself instead of relying on other people to take me to places or picking me up, though I would still probz use the ambulances for hospital appointments unless I have somewhere else to go after my appointment cause parking is a bugger even with a disability badge.

As for my age and a bungalow I'm 26 years old but know from friends who are disabled they have only got a bungalow as they are disabiled, but if I are in a wheelchair so have got a wheelchair and a friend of mine did say that a bungalow would be a lot better for me. Plus the place where I live now I can only live here for a maximum of 2 years and once that's up would be case come May next year 13th May 2015 I will have been at my address.

The only thing that confuses me, is that when I rang wherlchair services they said I couldn't self refer myself (fair do's) so i contacted OT from Sunderland Royal Hospital spoke to my lovely therapist Tonee. Explained she was the one who had to refer me for the wheelchair to then to be told from wheelchair services that I then had to be assessed by a physio (that's what confuses me) does the physio see if I can have a wheelchair even though it's been agreed I would benefit from one or is it up access me to which kind of chair would suit me needs most???

As I already know that my Fibromyalgia only effects me from the hips down.

As I have been to a shopping centre hired a wheelchair (which given in-mind their wheelchairs are big bulky extremely heavy, I was pushy myself and that when I pushed forward mine veered off to the left so I had to use more energy and strength to keel in a straight line. Which while I was out shopping I would say if was a good 2 plus hours shopping. Wasn't sore or anything when I went to bed woke up the next morning and was perfectly fine no pain nothing! :)

So if the physio thinks I would best manage an electric wheelchair I would say I would prefer a manual quickie lightweight wheelchair because.. I'm currently losing weight which means I'm going to be pushing my weight which will get lighter in time.

If I use an electrical wheelchair I would just balloon in weight and I don't really want to do that, but if I use a manual I won't need to worry about the weight of the chair as it's a lightweight chair, also if I use a manual chair it mean I will still be exercising by using the upper part of my body and my core which will help me maintain weight loss as I'm using muscles.



Hi Susan20067389

I am so sorry to read of the horrid time that you have had to endure, and I genuinely hope that you can find some resolution and relief to your problems.

I agree with you that the nurse was out of order saying that to you! But the OT sounds very nice.

I sincerely hope that you make a good, full recovery soon and back to your usual self.

All my hopes and dreams for you

Ken x


Thanks Ken me too..

Most/all my family think a wheelchair is the wrong choice for me but as much as I value there point on that the only person who can make the decision is me as I would rather me safe in a wheelchair then to fall seriously injure myself and/or suffer the wrath of fibromyalgia weeks if not months after.. As that fall that I had back in January in my flat I still stuffer with pain to this day.. So I think I am the only one who can make that discussion. Plus it's the first time I have had a OT to back up my discussion and I'd rather go with it.. I don't always have up use it. But if I have it at least it will be there to use as and when I need it.

But I think they will think I will use it all the time and lose all use of my legs which I don't think will happen as to get into my dads and sisters there is a big and steep step to use and that's even if my dad moves house :) so if I had a wheelchair I would have to get out of it to get into their houses.



I think that you are so right! There are times when walking just simply isn't an option for safety reasons. When I fell over in November this would not have happened if I had already got a tri-walker? So now I never leave home without it!

I understand that you will not be using a wheelchair all the time, so I cannot see a problem with this? From what I have read you really appear to have given this a lot of thought and seem to know what you are doing and why! So, good luck my friend and I want to wish you all the best with whatever you decide to do?

Take care

Ken x


Thanks Ken,

I will keep you and everyone upto date.. If I get it I will put a picture or try and send you a picture of it.

I think it's funny yet frustrating when my dads partner try's to control me so I have desided I'm not going go tell her anything about it if she asks il just say nothing is happening.

As I can't tell her much without her running to my dad to tell him. So if she asks I'm not going to lie il just bend the truth a little.

Do you no anyone in a wheelchair with fibromyalgia? If do add they in a standard wheelchair or a lightweight (i.e. Quickie is a the brand I'm looking at)


1 like

From what I have read on the forum there are quite a few members in a wheelchair because of Fibro, it seems there are so many levels to this illness?

Probably for the best to keep these things close to your chest so you do not get unnecessary pressure put on you to go one way or another.

Take care

Ken x


Yeah thanks,

I think cause of other illnesses it might be best..

Even though I was stressed in hospital I don't think I would have known about a flare up due to being on suck strong painkillers.

As I'm on Gabapentin, Amitriptyline, Pizotifen, Oxynorm (liquid 5ml's every 2 hours) Oxycodone and a few other tablets. All for my polycystic kidney disease :/ x


I use a light weight wheelchair also a mobility scooter . I like the chair because i can get out and walk a bit using the chair as an walker i cannot self propel as my shoulders and hands are to painful . But I love my scooter for the freedom and i dependence it brings me . Good luck with getting a wheelchair Susan


Thanks aura2 :) xx


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