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Pain beyond belief

Hi everyone, I was diagnoided with ms in May. Nuero reckons I have had it at least 10 years, but was treated for fibro all along.

i am normally able to manage the pain but the last 3 weeks it has become unbearable, nothing is hitting it even morphine which I only use rarely is nearly taking the edge off it. The pain is the worst in ankles, knees and feet the feel like the are banded really tightly and like some one is drilling into them( if that makes sense). The pain has now spread to all my ankle and leg muscles and I feel like I am losing my mind.

i am not properly in the system here yet( I live in dublin) so I have no ms nurse as back up. I am a busy mum of 5 who also works outside the home and generally very positive, but at the moment I would like to go to bed and not wake up. I am not being dramatic when I say that but I cannot cope with any more pain, my body just needs a break. Is this a relapse, and if it is is there any point in going to a&e they cannot give me any stinger painkillers than I already have.

just to add to the general joy I tried using a stick today as walking is agony and fell over it twice, how on earth do you master using them. Any help would be greatly appreciated.

thanks,

ann

Hi Ann, I’m so sorry to hear you are in such pain. God it sounds awful.

If you have relapses it means you have Relapsing Remitting MS (RRMS). Unless they’ve told you that you have Primary Progressive MS?

I think you need to do 2 things for the time being…

  1. Contact your neurologist and see if you can get an appointment to see about this pain. If you have RRMS they should be able to put you on a drug that will make the relapses less severe.

  2. Go to your GP and get a sick note for at least a couple of weeks. It’s madness working with this sort of pain. You really do NEED to be in bed. Rest will help the pain. Stress and pain are making your symptoms worse and you really do need a break.

Can you possibly phone GP and get urgent appointment for today or for Tuesday morning??? (I’m not sure if this weekend is a bank holiday in Ireland… it is in UK… if it’s not get an appointment for Monday).

Also you need so see an physio to teach you how to walk with the stick. See the GP about that too. He/she should be able to refer you (but again that might be different in Ireland).

Please please please promise me you will do the above!!!??? Ann it really is MADNESS working with the pain that you are in.

Thinking of you,

Pat xx

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Pat thanks for the reply, I could not go to work today so I am going to take some sick leave as you suggested. My nuero secretary is in the office this afternoon so I will try for emergency appt. my nuero thinks it is progressive but still waiting for some test results to come back before he will call it for definite. I think he is certain it is progressive but is giving me some time to come to terms with diagnosis.

pat have you suffered from the severe muscle pain, this is a new one for me.

thanks for replying I really appreciate it.

ann x

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Hi Ann, no I’m very lucky. I sometimes get agonising pain in one hip or one wrist but it never lasts more than about 24 hours.

However some people on this board do get very bad pain. It’s important to remember that everyone with MS is different. We all have some of the same symptoms but lots of different ones as well. No two people with MS get exactly same symptoms.

I’m very glad you are off sick and getting urgent appointment with neuro!!! Good for you Ann.

Please let us know how things go and what neuro says.

Until you see neuro I would take the morphine as prescribed… don’t worry about it… just take it daily at the dose the prescription says. No use being brave with that level of pain.

I know you must be busy with the children, but please try and get some proper rest. In bed if possible or at least stretched out on sofa.

Take care hon. Really hope you can get this sorted soon.

Pat xx

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Hi Ann,

Pat has given you great advice. She is our forum mega star!

I suffer with terrible pain…I have various pain meds…sometimes they help and sometimes they don’t but I do have to say that Pat is right the more you rest the better you will be …the less you rest the worse you will be! I know that’s easy for me to say…my son is grown up now, how you manage five children I can’t imagine but you deserve a big gold medal!

I do hope you get some answers from your neuro and hopefully they will also put you in touch with a neuro physio…they can help a lot with pain too as sometimes secondary pain can be caused by us trying to counteract pain by standing sitting or even sleeping in incorrect positions.

I am personally praying for the day that a Sativex is available to us all on the NHS I have found that extremely good but far too expensive to buy privately …I do use the reall thing if it all gets too much for me but not easy to get hold of and I resent feeling like a criminal! My MS nurse and neuro both know I use it and both agree that it is one of the best things for pain…I find it’s best taken with pain meds if things are really too tough to cope with

I was able to alleviate some pain by sleeping in a slightly different position…you’d be amazed at the difference something like that can make. If you look on the MS Trust website they have a small section on posture…not only for standing but for sitting and sleeping too

Good luck Ann I really hope you can soon get some help, please let us know how you get on.

thinking of you,

Nina x

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Hi nina, thank you for your advice I will take it on board. I got a nuero appt. for Monday so hopefully he will be able to offer some help. Sativex is now available for ms in Ireland since last month so I am going to ask about that.

thanks,

ann x

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You’ve been given some good advice for dealing with the pain - much better than I could offer.

For your problems with the walking stick, as Pat says, you really need to see a physio - ask whichever doctor you see first for a referral. However, I figured out the basics on my own and just got my physio to check my technique. Decide which is your good leg and which is your bad leg. Hold the stick on the opposite side of your body to your bad leg and as you walk, move good leg, then stick and bad leg together. Swing the arm holding the stick in a natural movement and don’t try to put the stick too far forward. Also, let the stick lean slightly outwards from your body - don’t try and keep it close to your side. Then it’s a matter of practice.

For stairs, go up good leg first, then bad leg and stick together. Come down bad leg and stick first.

Hope this helps!

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Hugs from me, sorry your in such pain

Don

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Mitzi, you have solved one problem I was holding the stick on the same side as the bad leg thinking it would support it. Won’t do that again, no wonder I tripped up. Thanks for that.

thanks Don for your kind words,

Ann x

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Hi Ann

Sorry you are in so much pain at the moment, but I agree take the morphine as prescribed and rest as much as you can, easier said than done with 5 little ones, accept any help that is offered.

Glad you have got an emergency appointment with neuro, tell him how it is,don’t put on a brave face, and hopefully he will have something to offer that helps.

Hang in there, Monday will soon be here, let us know how you get on please. (Hugs))))

Pam x

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I agree about the morphine. Also, just wondering if there is some inflammation going on and perhaps steroids may help but I’m just guessing…I’m PPMS.

I hope the appointment goes well on monday Agenda and neuro helps you with the pain.

When I first started using a walking stick it felt really strange and I kept catching my foot on it…my stick was in the correct hand you’ll get used to it.

Good luck on monday

Noreen x

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