Aches & pains?? x

New diagnosis and before diagnosis
1

Morning everyone!

I’m confused as usual – and as usual would appreciate any input advice!!! x

I’m trying to work out what is the difference between neuro pain & muscle pain and which is which etc before asking my GP for something to help me! It’s really hard to sort out all these diverse & odd symptoms because some are mild, some are excruciating some are constant and intolerable; some constant but tolerable; some sporadic but intolerable; some sporadic but tolerable!!! No wonder it’s confusing!!!

Also – before diagnoses what would you recommend helps with what – based on your experiences?

  • Very stiff, aching muscles, almost flu like feeling in whole body – pretty constant so would like something to help

  • Muscle spasms/stiffness – this is pretty constant particularly in my back & legs – related to above I suppose so would like something to help

  • burning/freezing sensations in the muscles

  • Muscle ‘cramps’ – very very painful but sporadic so I’m tolerating it

  • Foot – very sharp shooting/gnawing pain deep in the back of my left foot – this almost feels like the bone itself is ‘snapping’- this often comes and lasts around a week then eases – again it’s sporadic – but I literally can’t walk when it happens so is a pretty major problem for me so would like to have something on hand to help when it happens

  • As above but in the ‘ball’ of my feet – painful to stand/walk

  • Regular sharp pains that come and go - lasting from seconds to minutes to a couple of hours in different parts of my body including arms, back, legs, hip, groin, behind the eye and in my head – again sporadic and tolerable I suppose because of this - hard to plan for this?

  • Pins & needles, funny sensations and numbness and on skin surface eg leg and scalp - These are not ‘painful’ as such – I find them annoying but tolerable

One of my major symptoms is the fatigue – this often comes with all the above including and absolutely floors me – but even on it’s own, it’s a major problem!! Anything I can ask for to help with this??

xxxJennyxxxxx

2

I’m not a medic, but I would have thought that you need a muscle relaxant (e.g. baclofen) to help with all the stiffness, cramps & spasms and a neuropathic painkiller (e.g. amitriptyline, gabapentin, pregabalin) to help with burning/freezing, sharp pains, pins & needles and other weird sensory stuff. Not sure about the gnawing pain, but could also be neuropathic?

Whether or not your GP will prescribe anything is debatable though - they can, but often don’t like prescribing without a neuro or MS nurse’s approval.

Good luck!

Karen x

3

My GP refused to prescribe me anything,it had to be the neuro to allow any medication…

I can sympathise on the fatigue.It grips me terribly.I can get up in the mornings feeling kind of ok,then by time my child is dressed and off to school the tiredness is so strong,my brain and body are screaming for rest.I have to lay down for about three hours before I am able to make a cup of tea or some toast…I some times sleep,but its not like normal sleep you just drift off,my brain and body appear just to shut down.Then I wake up maybe 20 minutes later or an hour and think what happened.I dont remember falling asleep.Plus I dont feel I have even slept.

I dont know whats worse the pain,fatigue or my muscles pulling so tight my legs are bent and my arms are tight upto my chest and my hands are all twisted up.

The ticks,twitches,spasms,full body stiffness,fatigue for me all change as the day goes on,its not s constant pain it can ease off for a few hours if I am lucky or it can be so bad I sit crying for several hours.My arms and legs may mildly twitch and I have no pain or they can realy jump about and give me terrible pain.

All I can say is with MS the symptoms change day by day,hour by hour,minute by minute for me.I can not garantee how my body is going to react.

X