Forum

Bed ridden

Having had MS for over 20 years I am now bedridden have been for 2 to 3 years unable to stand or transfer head is spinning and is it all the time so unable to even try and exercise without feeling horrendous but the worst thing on my legs are paining them especially at night anybody have any suggestions about relief of the pain in my legs, I am on very low dose pregabalin but not much else, I seem to have bad reaction to any medication I take. I am at the end Of my tether don’t see the point in living anymore counselling doesn’t help they can’t take away my discomfort and pain and non-existent

2 Likes

So sorry, that sounds bloody awful. If it was me I’d be bellowing for drugs of any kind to relieve the pain. I really hope that you have someone who can shout and make a fuss on your behalf. No one should have to cope with such frequent pain.
I wish I could offer something more useful than my sympathy.
Mick

2 Likes

Try Magnesium oil spray on your leg muscles. works for me.

Cheers, already tried that awhile ago didn’t do anything now unable to apply anything to my legs I can’t reach them.

You’re right it is bloody awful at the moment as I’m writing this I’m in a lot of pain been awake since 2 o’clock this morning with it and it is now 4 am, It is nerve pain in an old accident had every test on it and unable to find any problem, they wouldn’t say that if they could feel what I’m going through. I used to have no problem with Pain could put up with anything but my pain threshold now is so low oh well. I take to Pregablen but I am on a low-dose trouble is even on a low-dose it makes me feel spaced out and I am already spaced out with The MS I feel as though I have been on a permanent rollercoasters for more than 20 years my head just feel so dizzy and lightheaded. Right I’m going to try and put some more capsaicin on my foot/ankle. Sorry for the rant but guess what there’s so much more I could say never mind. Christine

have you asked your neuro if you would be a candidate for Sativex?

Christine,

No apologies needed here. Having the odd rant can be useful, particularly as most people here will understand.
M

Hi, I take cannabis for terrible nerve pain its amazing taking the pain off straight away,some people take CBD oil with good results, I also take magnesium tablets and the spray at night.

I live in Bradford West Yorkshire say no more, post code lottery and anyway nowhere to get in touch with my neurologist. By the way excuse all the stupid spelling mistakes et cetera I have to use voice control unable to use my hands

Cheers will try the magnesium tablets see if that helps.

surely if your bedridden someone must be helping you? You can type with your voice control so you can send a message to your MS nurse and ask for help, or you can contact adult social services who will come and do a care plan etc. I had a friend in your area with MS who was seen ok.

Just think even if you spoke to your GP ask them to refer you back to neuro and see if you can be put on SATIVEX. perhaps.

Cheers for that, I do have carers coming in but I’m afraid they’re not up to my standards as everybody keeps telling me but they don’t get paid very much so what can you do, I am 73 years old up to 3 years ago at least I could get out of bed onto my wheelchair by myself but now I can’t do that by the way it’s 3:30 am again but that’s pain in my knees that has woke me up Old codgers things oh I forgot I am an old codger that’s The other problem I never looked or acted my age then suddenly I just became a non-entity and I don’t think the way I’m feeling is helping my situation, I just cannot get used to not being able to do anything for myself, oh dear off I go again feeling sorry for myself. Right I’m going to put my audiobook on again and listen to my Scandi noir good night Christine

I am sure as you are still going strong in your own way, the carers must be doing a fairly good job lol. I am 70 still keeping as mobile as I can. I said to my neuro at my age its not only the MS that is out to get me lol. A few of my friends without MS are struggling to walk, and do basic things down to arthritis, RA and recovering cancers. Ah life with age. we work hard most our lives and expect to be having a retirement.

Who are these people who go off on cruises and enjoy themelves. I know my brother who is 72 was was one of those people he and his wife would go every year cruising somewhere, today he is waiting this morning for his open heart surgery. He contracted Sarcodosis several years ago they think it started when he was in Canada on another cruise, and sadly now the aftermath of this disease has screwed up his heart.

I couldnt stay in bed all day not a chance i recline instead (same thing isnt it lol). I have a lovely recliner and spend a lot of time on it looking out the window watching the birds lol. Listening to my music and chatting to my dog and my new kitten.

I am half italian and fight hard every day to stay upright like my mum was 93 she never gave in. No beeping MS is going to put me in a bed permanately lol. I have so much to do still i find things to do on the internet or on my groups.

Scandi noir is that crime story. my son in law is swedish. oh he has RA and guess what he is a care manager for care workers lol. go figure.

take care. Oh i have been watching the unfolding volcanoe in La Palma learning quite a lot about volcanoes. I follow Bushcraft Bear on youtube he explains it great.

Hello thanks for your reply guess what I was married to an Italian my son is half Italian even though we are divorced we are still friends and I still go over and see my old family they come from Genoa in the north of Italy. I have a recliner chair but unfortunately by the time my carer has done what she needs to there’s no time to get me in the hoist and get me in the chair which is in my room Those damed slings are so uncomfortable especially after I have just had a suprapubic catheter fitted which is still very sore after five weeks there I go again moaning, And yes I have osteo arthritis that’s part of the Problem that wakes me up At night. By the way scandi noir’s are Scandinavian crime thrillers.

Hi my mum originally came from Naples, met dad in war. She had sisters around Italy, Milan, Gorgonzola, Recanati. I have been there to visit over the years but sadly all her sisters have passed away.

I am so sorry your in such a bad place i cant imagine being hoisted up it cant be comfortable.

I think i will end up in my recliner lol. big hugs. xx

This was my mum.

Hi my ex sister-in-law’s mum came from Naples and look very similar to your mum, are used to go over on the Sunday when I lived in Italy and she would cook Polpatone, Probably spelet that incorrectly I can speak Italian but not write it not very good at writing and spelling English easy especially with voice control which I have to rely on trying to correct the odd mistake with these silly fingers. The photo of your mum reminds me very much of my sister-in-law‘s mum.

Meatloaf, mum used to make it. My mum was a great cook but equally so was her meals traditional for britain, her roast was amazing.

I love italian food lol. xx