Sudden realisation that I will have all this pain for life

Everyday living
1

Hi all

I hope you are all as well as can be expected? I don’t mean to sound miserable and pathetic as I am normally a very happy positive person and I know that a lot of you have this horrible MS much worse than me.

I went to see a Physio last Friday as I had suggested to the MS nurse that maybe some of this pain I get is not due to the MS alone.

I can understand the hand, arm and face pain could be due to the MS.

For some stupid reason I actually believed that the Physio would tell me that some of my constant hip, back and waist pain was due to something that I could do something about like lose some weight or hip replacement eventually or something, I don’t really know what to be honest.

Anyway he said that he could find no other reason for it so I suddenly came to the realisation that I will have to put up with this constant pain and all of the other horrible symptoms for the rest of my life.

I do know that it would not hurt to lose some weight as I am about 2 to 3 stone heavier than I should be, but since having to give up work and the gym etc. about 9 years ago the weight has piled on.

Oh dear, I am sorry to sound so negative I just really thought that there may be a solution to some of it.

Thanks

Jaycie x

2

Hi Jaycie

Yes it is a bummer when the pain is down to nothing else than the MS, I had it last night and it felt like I had pulled a muscle yet today that particular pin is gone , replaced by another, have you tried swimming mine is not great, my friend who is in her 70s swims past me but still feel it helps a little, gym days are gone , take care

trish

3

Hi Jaycie

I follow blood group diet and try to swim 3 to 4 times a week, and I’m currently on the fasting type 5:2 plan.

PS it would be good if you can keep a diary of how you feel day to day and set some goals you are aiming at and writting it all down for you to monitor.

Good Luck

Jimbo

4

Well, just to put a slightly different perspective on things, it’s not actually any consolation if they say it isn’t down to MS.

I have chronic musculo-skeletal pain, which I personally am convinced is due to the MS. Symptoms have developed in parallel with the illness, and despite exhaustive testing, both during the MS diagnosis, and before that, no other explanation has EVER been found!

Yet because it’s not “textbook” neurological pain, I’m told it’s nothing to do with it. In effect, this amounts to being told I’m in pain all the time from NOTHING! How can it be from nothing, and how come it isn’t from the only thing I’ve been diagnosed with?

I know it probably doesn’t make any difference in terms of being stuck with it either way, but what do you do about pain they’re claiming doesn’t come from MS, when there’s no explanation where it does come from? I don’t think there’s anything left I haven’t already been tested for. I’ve had complete rheumatology screening…twice.

Honestly, if my neuro is right than none of my pain is coming from MS, I seriously question whether I have MS at all, as apparently it’s symptomless, if none of my pain comes from it. To me, that makes no sense at all. I have a serious illness, and I have chronic pain. How can I be expected to believe that’s pure coincidence, and the two are unrelated?

I have particularly distressing foot pain, yet I’m told I don’t have spasticity in my feet! Why, then, does it respond to anti-spasticity medication (Baclofen)? Another thing that doesn’t make sense! If it wasn’t spasticity, and wasn’t even MS, how would Baclofen help at all? Admittedly, it doesn’t help as much as it used to - not as effective, or for as long. Which is why the subject has arisen. But how would it be making ANY difference, if it was some random, unconnected problem?

Tina

x

5

Hi Jaycie,I’m in the same barbed wire canoe as you,but it sounds to me that you should have access to heavier weight pain meds.I wear Butrans Morphine patches and have Oromorph.If you’ve never tried Tramadol it offers reasonable pain relief and has been known to cause weight loss.Your GP might not have permission or the ****s to prescribe these pain meds,but your Neurotic has permission. The weather is hurting lots of us at the moment and a change should help.

You’re not being negative as it is a hell of a realization that this is it.A lottery win would improve things and we’re talking more than a Tenner.

Be lucky,

Wb x

6

Hi thanks for replies so far and Woblyboy if we do ever have a decent win on the lottery, I’ll let you know (husband does it)

Jaycie x

7

Hi, Tramadol is quite effective but quite strong so not something to take during the daytime if you need to work/drive etc. I also have Oramorph for when pain is really bad but to be honest for me it doesn’t help much more than any other pain killer. Actually one of the best pain killers i have found is over the counter, Nuerofen Plus, again makes me drowsy and slow and can only be taken for short periods but I find it effective, x

8

It might be worth seeing a chiropractor I ahve really bad leg pain making it difficult to walk and drive. 6 months later on lots of pain killers. The physio told me that there was nothing to be done. I went to a chiropractor who told me it all fit with sciatic nerve pain, not ms. He looked at my mri and was very detailed. After 3 sessions im finally living life again. It might be worth a try. Xx best of luck