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Pain, Pain and more Pain

I woke up this morning in so much pain all over my body I didn’t know how I was going to manage, I live on my own and do not have carers coming in, The first hurdle was, how do I get out of bed?? With lot of pain, swearing and I can’t do it I managed to sit of the side of the bed from there it was standing up, dangerous at the best of times, now for mobiity, you don’t need to hear the rest other than it was painful and dangerous. What I want to know is does this pain ring any bells with anyone. I have searched the Net and the American sites have reference to it but I haven’t had much luck with a UK site. Now my worry is how do I get dinner for myself and go to bed tonight.

Out of interest has anyone had to go into a nursing home because they can’t maage at home?

Drayton Girl

Hi DG

Really sorry to read this, I’m having a bad few days myself but nothing like you’re describing, and I am lucky enough to have carers. You should be able to arrange care through Adult Social Care Services.

Presumably your neuro has prescribed painkillers, or have you not needed them before? Seems like you need to get to see your GP as soon as possible.

I hope things ease up for you soon, and sorry to not be of much help.

Kev x

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Do I know that pain, a few weeks ago I could not even twist or turn in bed and spent over 2 hours to inch to the side of my bed and slide off until my foot hit the wall ( about 18 inches away ) and about another hour to get to both feet, It would have make a good comedy sketch, thought not so funny at the time I could see the funny side afterwards.

Like you I live on my own and do not have carers, and often suffer a lot of pain and finding my body “locked up” on waking.

Every night is an adventure for me, I find sleeping as propped up as possible helps, at least you are more able to get to the edge of the bed.

I find it hard explaining to my doctor and even my MS nurse how painful it can get.

I have just brought a reclining chair that I can sleep in when I am feeling really bad, not that I get that much sleep,

If you feel that a nursing home is something that would work with then look into it, maybe a assited living flat would be better, there you are still independant but have nursing staff on call, Your doctor or MS nurse could help you with finding out about both.

If you want to talk any time send me a message.

june xxx

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Hi Drayton Girl, I am so sorry to read that you are in such an enormous amount of pain.

Unfortunately some people, although not all, get this type of pain with MS.

Firstly, have you seen your neuro or GP lately? What pain drugs are you on? It sounds to me as though you need to see your neuro urgently to get this pain under control. Several people on here take Morphine for pain which is the best pain killer going.

When are you next seeing your neuro?

Very few people go into nursing homes for severe disability these days as there are ways to manage your disability at home. As Kev says, there are care packages where you can have carers come into your home. In fact I live in sheltered housing and we have one resident, only in her 60’s, who has 24 hour care at home. You do not need to be in sheltered housing to get a carers coming in.

As Kev says, contact Adult Care Services in your area. Look on internet or phone your local social services office for their number.

I hope this has given you some ideas of what you can do to ease the situation. Although I know when very ill and in pain it is hard even to make the calls to get things going… so is there somebody who can help you and make these calls? Don’t be afraid to ask for help. It’s something we all have to do.

Thinking of you and really hope your situation improves soon.

Pat xx

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Hi June, sorry to read that you are also in a great deal of pain.

What painkillers are you on? It seems to me that you need something much stronger. Are you on Morphine?

Perhaps you would also benefit from carers coming in. You should call Adult Social Care and get more information.

Thinking of you,

Pat xx

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Hi Drayton Girl,

im so sorry that I am late answering , I didn’t see your post before…Kev and Pat have both given you such great advice. I hope things have improved for you since you posted.

my pain levels can get pretty bad but I’ve never suffered so badly as you. I haven’t been given morphine but I do take diazapam for pain together with a general painkiller …it is addictive so I try to only take it when the going gets really tough.

I really hope you soon get help, come back and let us know how things are going.

thinking if you,

nina x

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Hi Drayton Girl. Sorry to hear about how you’re suffering. The others have given you great advice. I too suffer severe pain and it took a long time to find a drug regime that suits me but I’m comfortable for the most part now. I’m one of those that needs meds that work on the nervous system, Gabapentin and Amitriptyline and Morphine which is an Opiate. They are very addictive which worried me for a long time but I’ve been reassured that if I have to come off them it will be done slowly, safely and comfortably. Research is currently being done at Cambridge university about pain in MS so it is being taken seriously. Please see your gp or Neuro, it can be eased.

An Occupational Therapist may be a help with safety at home or help to relocate. If you don’t currently have one you can self refer through Adult Services. I hope this helps and if you want to ask me anything please do. I hope you’re a bit more comfortable now, take care

Cath xx

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Hope you can find something to ease it.

Don

Thank you all for your replies, today is the first day the pain is a bit easier, not that I can do much yet and it is still a comedy of errors trying to sit up and get out of bed

I have taken on board what you have been saying and I will have to come to terms with admitting I need carers. As far as drugs are concerned I take Amytrip at night then Prebelin and Co-Dydromol during the day, I think these drugs could do with a review, the trouble is I have so many other medical problems which need drugs it is difficult to find medications that will agree with each other. I see my Neurologist in October.

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Hi again Drayton Girl, glad to see things are a tad better.

I really think you need to get this pain under control. Luckily neuro appointment isn’t too far off (although you could phone neuro secretary and ask if there’s any chance of an earlier one… you never know they might have a cancellation).

I think you really need to see a pain specialist. Lots of hospitals have these and of course they are expert at making sure that all your meds work together. They are MUCH better at understanding pain and the way pain meds work.

Remember to write a list for the neuro appointment. Do not underplay your pain. Really say that your pain is 10 out of 10 and ask if you can have a referal to a pain specialist.

In meantime, get that care package sorted out. You really need it.

Best of luck and do come back and tell us how you’re doing. You have a lot of friends on here and I wish we could see you more often.

Take care,

Pat xx

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