MS Society UK | Forum

I want to scream

I’m right behind you on this one, people try their best to understand but they just can’t. I’m sorry you feel like this and that you are in so much pain. But just scream and scream and you may feel a little better. I know it’s no help but just wanted to let you know that your not alone in any way. I’m completely new to this and I just feel so angry so I completely understand where your coming from. I really hope you get the right help and you start to feel better x

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Rant away if thats what you need to do. There will be plenty people here that totally get it. The early days are the hardest so just let it out

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Thank you xx.

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Haven’t tried that one. Will mention that one to them see what is said x thank you

Sorry to butt in but whilst I totally get the frustration and anger, I have learned to restrict my anger to short bursts only. Anger takes far too much valuable energy . All the best mick

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Thank you. Hugs much appreciated x

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That’s true

Hi hun, solpadol is codeine i believe. I would think as you have a nerve pain you should be on one of the standard drugs for this, like @Cruella said. then you can take them in the day as well.

If your driving a lot it could be the pain is more down to repetitive strain injury sitting in one place and using arms for steering cant be much fun if you drive a lot in the day.

maybe talk to your GP and get referred to a pain clinic? No one should have to be in pain so bad it makes them want to scream. x

There is a ton of meds out there to help this. Well not quite a ton but really solpadol is not the choice i would have thought with somone with MS in MY HUMBLE OPINION. xx

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Thanks crazy chick. As I am still undiagnosed they are watching what they give me for now. It’s horrendous. I know it’s not the driving as I have an automatic car and it’s my left side that the issue is with. They are querying neuropathy but as my mri was Normal they want to rule out ms but I am really unconvinced so is my own doc. She thinks I am in early stages of ppms but it’s down to neurology. See what happens today I suppose x

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did you have full spinal MRI?

No. Just cervical. I have wear and tear on spine but not enough to cause all my issues.

PPMS is not found as much on brain MRI as it is proven it is less inflammatory but it is found more on spinal MRI. In the states i believe some doctors refer it as spinal MS.

Most of my lesions were on the spine. you can find out more about it. Its not my ideas its fact.

FROM web site.
It is currently felt that PPMS is largely due to degeneration of the nerve fibres, rather than inflammation, as seen in RRMS, although there is considerable cross over between the two forms. Some neurologists now consider all forms of MS to be on a spectrum, like other conditions like asthma or autism.

Hi, my GP put me on pregabalin earlier this year, to see if it would help with heel pain. I had been on amitriptyline for 20 years, for other nerve pain and sleep. She said they didnt think being on pregabalin and amitriptyline was safe. So she took me off the later.

The pregabalin did zilch to help. My sleep was so bad that I weaned off preg and went back on ami…sleep returned…heels the same.
Boudsx

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Interesting!!!
I currently take gabapentine and amatryptaline for nerve pain and sleeping , however previously on pregabalin and amatryptaline but changed recently due to weight gain from the pregablin. So. On reading your post it has created new questions possibly? I am meek and mild usually at Dr’s :thinking:

I started on Gabapentin (weight gain), changed to Amitriptyline (too much risk with OD), then tried Pregabalin (made me feel very unwell) so switched back to Gabapentin… better the devil you know and all that.

I wish there was something for nerve pain I could just take prn, but there doesn’t seem to be. So it’s a case of tolerate the one with the least side effects or be in so much pain I don’t know what to do with myself.

I went to see a pain doctor right. He said to me the only thing i can offer you is pysch drugs which will have affect on you one way or the other i.e. basket case, not sleep or not be able to function lol. He said there is nothing really for nerve pain, the drugs are designed to just keep you quiet lol. well really i was shocked. He was the one that put me on 2mg diazepam at night. I have been on ages but never upped them are they working i think so. also coincidentally i was put on Propanonol a BP and heart drug. gosh way back before i had issues. been on 80mg ever since, and over time i have read this is now used in MS FOR anxiety in nerve pain etc so i do wonder if it is kind of working.

also i am blessed with a high threshold of pain. I use mind over matter therpy for myself. I constantly doing things online to stop thinking about it but it doesnt always work. I dont know what to suggest but i am not going to end up like my husband who ate codeine 300 like sweets as the more you take the more you need.

lyrica (preglabin) turned my daughter into a basket case. she is now weaned off it, can function and do things.

so many things can be addictive.