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Just when I thought it was coming to an end.....

I am here again, asking for help yet again! Last weekend and most of the past week I have been laid up in bed feeling nauseous, hungover, dizzy, weakness, numbness down whole right side, and just plain extreme fatigue. Yesterday I got up and felt tons better, rested where possible, but the symptoms had lessened to hardly anything. Then as the day progressed I started with excruciating back pain. Have had surgery on my back last year, but this was worse. As the day went on nearly every part and joint in my body became painful. The eye pain and headache which I have been told is ON kept me up most of the night, but. Can feel it on the other side now too. Has anyone else had this? Even the skin on my back hurts to touch. Can anyone else identify with this? Ps, I have my first neuro appointment next week. Thanks in advance Sam xxx

Hi again Sammy,

Not absolutely sure this is MS. Whilst I do get a lot of aches and pains with mine, not usually so widespread, and so excruciating, and all within the space of a day.

Occasionally I DO hurt my back, which is extremely painful when it happens. I’ve never felt this was a relapse, although I do feel it’s connected with the MS, because my core muscles are quite weak. I think this in turn leaves me more vulnerable to injury. But I still believe it’s an actual injury, and not MS nerve pain. I don’t feel “relapsy” with it.

You haven’t caught flu’ or something, have you?

Tina

x

Hi Tina, I am really not sure about anything. I even put it down to flu, and maybe that exacerbating my symptoms of numbness, weakness and pins and needles. It certainly would fit with flu. My little boy just came to lean on me and I nearly jumped through the roof as his elbow rested on my ribs. Every joint seems to hurt, not all at the same time, but I feel hypersensitive, like all my nerve endings are on high alert. Sam xx

If you do get something like flu’, it will very likely exacerbate other symptoms as well. So the aching everywhere could be flu’. The reason I’m hesitant about whether that would be MS is that sudden onset symptoms (i.e. a relapse) depend on where the lesions form. It’s very unlikely there would be a lesion that makes EVERYTHING hurt. It’s usually localised to specific areas - although if it’s a spinal cord lesion, it may affect everything from that point down.

I think sudden onset, generalised pain is rather less likely to be a relapse, and more likely to be a virus of some sort - which is coincidentally aggravating the neuro stuff.

I suppose another possibility is referred pain. Sometimes, if you have an injury at a specific site - say, in this case, your back - pain can be felt in areas quite distant from the actual site of injury. However, I do not think it’s possible to experience referred pain literally everywhere. It’s certainly possible for back pain to radiate to hips, buttocks, even thighs. But not every joint, everywhere, I don’t think.

T.

x

I am sure you are right. What makes it worse is that because I had two ops on my back last year within six weeks of each other, subsequent MRI scans have shown significant scar tissue which has already left me with residual numbness, pain and tingling in my legs. However, this pain is worse than its ever been and I have had three episodes now of urinary incontinence. My worry is that maybe I have either a, prolapsed the disc yet again, or, b, have a lesion around that area which may be causing problems. I just hope I get some answers on weds. I ave a diary and list of symptoms as long as my arm, feel like a hypochondriac lol Sam xxx

At least you are going soon - that’s a lucky coincidence!

I find problems typically strike when I’ve only just been to the neuro, and said everything’s fine, and it’s at least six months to the next appointment! Do I badger them again, and say: “I spoke too soon!”, or just put up with it?

Hope you get some help on Wednesday.

T.

x

I think badgering is the only answer. The problem is, the neuro guys see this day in day out, so it becomes less shocking if that’s the right word. So they don’t appear as intense, I guess, as you want them to be, with something that is stopping your daily routines. I as a nurse in theatre took my work seriously, but it’s only when you have an op yourself, do you fully appreciate how patients in the anaesthetic room, are actually feeling. That’s why I am scared that I may end up with someone who is complacent to my symptoms. At ths point in time, I feel like packing a bag and going to the hospital and not leaving until they do something. Once I get some answers, I am sure I will calm down and accept the situation, knowing I have links etc to help me if I have questions or need help. Wish I could take a sleeping pill and wake up on weds morning lol Sam xxx

I have had a relapse like you describe, i felt like i had been run over by a truck,i hurt everywhere,and had vertigo that bad i was sick if i moved my head,i wished i could have died at the time,i felt that bad,also when i get my relapses mine start by getting bad symptoms for 5 days or so,then they seem to go as if by magic,and i feel 'normal’again, then bang on the 6th day the symptoms all come back,and then i know that its a relapse,and usually a bad one lasting for many months.my relapse have always started like this.hope you feel better soon.

jaki xx

Hi Jaki, Exactly, run over by a truck is a good comparison. The thought of you having to go through this for months must be soul destroying. I am hoping that in a way I am still like this on weds for the neuro to see for herself, but equally, I just want to go back to normal again. I really hope this isn’t going to be the norm for the next few months, I know people cope, but I seriously am not sure I will be able to. I had so many plans to get the house sorted this year, after the set backs of the last few years, that, I really don’t have time for this lol. Hope you are feeling ok xxx

Thats what is so awful about having ms isnt it, the unpredictability,just not knowing how its going to be from one day to the next,some days i can get up and do things,the next day i am flat out,make no wonder a lot dont understand it, because i have had it for years,but still dont undertand it,i still cant get my head round feeling ‘normal’ one minute,then feeling very ill and stange the next minute.

Mine hasn’t’t been formally diagnosed by a neuro as yet, although two other drs are convinced that it is, and all the symptoms are pointing to it, but have said it may be a long road to getting it formally diagnosed, which worries me, as I am scared I won’t get appropriate treatment without a diagnosis. I have my first appointment on weds. It’s the suddenness of how it can literally take your legs from under you so quickly that is scary xx

sorry didnt realise,hope you get some answers on wednesday.

xx

That’s ok Jaki,there’s no need to apologise, honestly. I dismissed the two docs originally until these latest symptoms, but, weirdly relieved to hear that you are having similar, which means I am not going mad, but will hopefully get a diagnosis and not remain in limbo as I am now. Thanks for sharing your experiences, it has helped more than you know! Xxx

Yes I have same, awful pain all over J x