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Just dont know what to do anymore

I was wondering can anyone help. I have really had enough now of everything. I can’t seem to get any pain relief what works (currently on 1,200mg Gabapentin 3 times a day and 75g Amitriptyline at night and 20ml Coapaxone daily) and none of it seems to work.

I have had enough of the pain and how the pain has changed me so much. I just dont want to seem to do anything at all. Im scared as well that my hubby is going to leave me cause he says that I use the pain as a excuse not to do certain things (especially in bedroom department) but at the end of the day after trying to sort everything out in the house etc and look after my two boys as well I’m so tired all I want to do is sleep but he can’t seem to understand that.

I’m on my third bad relapse since I was diagonised in December 2010 and this time I can’t see anything out of my left eye and my left hand side of my body is a lot weaker but I don’t let it stop me trying to do everything that I normally would do it may take me a bit longer but I still do it. We have even taken on three chickens to look after and gives me a reason to get off my bum and let them out every day and put them back up at night.

I’m not seeing my neuro until April and can’t have any of my medication changed until then. I just don’t know what to do anymore I have had enough of it all and I don’t want to lose my hubby even though he says that he isnt going anywhere.

I’m open up to any ideas. Sorry this is a long moan but I’m stuck

Thanks Allie xxx

I wish I knew what to say, but I don’t, except that it sucks, it just sucks, it really does. I’m really sorry you are having such a horrible time. It is so difficult when nearest and dearest are struggling to understand how things are for us, and this always seems to happen when we are at a low ebb ourselves - doesn’t it? - and not best placed to take a deep breath, and sit them down, and have the calm conversation about how things are for us, how things are for them, and how we can best help each other.

Clearly the pain is interfering with your life in a big way at the moment, and April is so far away. I expect you have done all you can to get an earlier appt. I do hope you find a way of bringing that forward.

Hang on in there. It’s a bad time right now, but life has a way of unsticking things, just when you’re clean out of ideas. Hugs from here.

Alison

x

Hi Allie Have you thought about trying hypnotherapy or a TeNS machine for the pain? Cheryl:)

Hello Allie,

I’m so sorry to hear that you are going through such a bad time at the moment. Contact your MS nurse, pester the neuro’s sec’ for early appt, see your gp.

I’m sure your husband means what he says that he isn’t going anywhere, believe him. Tell him every pain that you have and try to explain to him exactly what it feels like. It sounds to me that indeed he loves you very much.

Don’t give up ((((((HUGS)))))

We’re here for you.

Love Janet x

Dear Allie

I can really sympathise with having a partner who just doesnt understand and mine says he is sick of listening to me moaning and things have gone really downhill in the bedroom dept as I have lost all interest which is not making things any easier between us…hes off out at a party…im feeling really weak and shaky at home…no energy at all. Its hard when youre responsible for children and dinner has become a huge challenge for me every day…I used to love cooking!

Sorry this isnt very cheering but just wanted to let you know youre not alone (((((((((hugs)))))))

Sophie xx

Hi Allie, wow you sound like me I also suffer bad with pain and it at one time seem to take me over. I was DX in 2004 and its take a while to sort me out.I still get apin and take Lyrica for it, have you tired that?I must say on a low does I can still get up and do stuff but if the pain is really bad at times I have to take a stronger does and stay in bed.

I feel for you and your huband very much as am in the same boat. Night time is my date with the pillow not fun time ( wink ). I feel bad about it but we have talked it over and life has moved on, if you want to talk more about it please write to me as I do so understand. I also have a young boy and they do keep us on our toes. I think its imorptant for the children to have things to do around the house to help you.Simple little things can help you like bringing in the washing even setting the table. well I have said a lot best go good luck Sherbet

Thanks for all your help. I have been phoning neuros sec and my ms nurse but all i get is they are busy and they cant change my appointment. The gps dont help much never see the same twice and they go by the letter they have recieved by the hospital and thats it.

My hubby and me had a chat last night and we are going to take each day at a time. And has promised me that if i moan about the pain he willlisten instead of saying his normal i’ve heard it all before and i dont want to know.

So all i can do is keep fighting and hopefully something will get sorted soon.

Thanks agaian and take care all

Allie xxxx

Hi Sorry I’m sending this to you again as I seem to have posted it last time in the middle of your quote - its me I’m still not used to this new site and am not coming on as much as a result but…

I think it is shameful that your Dr, MS nurse and Neuro are not dealing with your pain issue - why not present yourself at A&E and they will have to deal with it - you might get admitted for an assessment but at least you’d get to see the Neuro quicker and get the much needed pain relief. Once your pain is managed then this should also ease the relationship problems as its difficult to try to act normally when you are in so much pain. In this day and age there is no excuse for any health professional to leave someone in pain - they just need to find the right drugs to manage it for you.

With love, Mary

Thanks Mary

I have been to A & E and they have said there is nothing they can do cause I am already being treated and I feel like I want to give up with the NHS but I know somewhere deep down there is fight still left in me. I’m on the waiting list for the pain clinc but there is a 18 month wait so as normal its the waiting game

Allie xxx

My GP prescribed Naproxen for my pain…also on 50Mg of amytriptaline (sp?), 40Mg of baclofen and 8Mg of tizanidine for pain and spasticity. Can you see your GP and ask him/her about pain relief?

I think I need to keep bugging my gp for extra pain relief lets hope I get to see a gp I have seen before

Thanks Allie xxx

Hello love, you`ve had lots of helpful and kind relies, so I just want to add my

((((((((((((((hugs)))))))))))

for you.

As April is a long way off when you are in unbearable pain, I am surprised you can`t see your MS nurse. Often when I tell my GP about pains, she tells me to speak to neuro or MS nurse.

Vicious circle innit, love?

luv Pollx

I really hope you do this. 1200mg of gabapentin a day is a long way off the maximum dose so they can easily prescribe you more!

Do you think your GP will prescribe you more if you say that your MS nurse told you it was OK to gradually increase it until your pain was better managed? If yes, then why not just tell the GP that?! It may be a bit naughty, but sometimes needs must?

Karen x

Hi Allie

Please ask your GP to refer you to the pain clinic. I have had this service since 2002 and have benefitted in several ways although I did lose a complete year trying lots of medication (Gabapentin/3600mg etc), none of which touched the pain. I am about to have my third Sympathetic block to make my right leg less sensitive - they work well for me. Everyone is different and in the end it is down to each individual to focus on helping themselves. Without the support of my husband life would be much harder but I guess I would have to just get on with it.

Most of the time I use distraction techniques and have to make myself rest and although the pain never goes away completely I am now quite good at managing the intermitent pain. Constant pain is another thing entirely. Frequent naps are a good idea to get you through the day and mean you may not be as tired at bed time. I get the most help from taking a sleeping pill, this means I get 5 hours of sleep and it enables me to get on with life.

I also have a Rehab Consultant who I can self refer to which you should also ask your GP for.

Pregabalin is slowly being introduced (again) from a low dose as some years ago they gave me a high dose right away which was a nightmare, hopefully this will help with the facial sensitivity and Mick Jagger lips sensation.

A positive attitude is my main suggestion and having something else to focus on like the family and animals does help. I have also ditched most of the negative activities and people in my life so that I can keep away from negative thoughts.

I hope some of my experiences and tips help. Above all be honest about how you are feeling and don’t dwell on the negatives.

Cheers

Moira

Thanks again for all your help I thought I was alone feeling like this but I know now I’m not.

I’m due to see mt MS nurse on the 6th feb and will tell her the problems I’m having with the pain and I will be on the phone first thing in the morning to see if I can up my dose of Gabapentin or even steriods for my relapse.

I feel happier now knowing that there are people out there who know how I feel and my hubby says he is going to support me the way and he told me off for not telling him now much pain I was in.

I will keep everyone updated.

Thanks again

Allie xxx

Hi Allie

That’s obviously all a heavy load to carry. Just a quick couple of thoughts about the pain. Contact your GP, as there may be a pain clinic that you could be referred to. Also, do a google search for mindfulness & pain relief or pain management. I’ve been doing mindfulness exercises for a while now and have found it really helpful. Essentially all it is is just being aware of yourself and what’s going on around you in the moment - how your body is feeling, what things you can hear, what you’re feeling etc.

It doesn’t sound that impressive or like it could help with anything. But I’ve found that I’m much calmer, and I enjoy things much more. And although I don’t get pain as bad as you seem to be, it does help the pain reduce for me. For example, if I had pain in my leg I would think that I am in pain. But actually, by being mindful I know that that’s not quite true - it’s only my leg that was painful, and only a specific part of my leg. My arms weren’t in pain, my backside wasn’t painful, or my back or neck or face etc. And by doing this it somehow reduces and isolates the pain.

I don’t know if that makes any sense, but I’d recommend looking into it. Other than that, make sure you regularly do things that you enjoy and energise you - read a good book, or spend some time in nature, maybe start a journal. You know yourself best and the things you love, so make sure you do them, as they’ll bring you life, and the world needs an alive you.

Hope you get some relief soon

Dan

Thanks Dan will have a look and see what I can find and I will try anything once

Allie xxx

Another vote for getting referred to the nearest pain clinic.

I am on much more Gabapentin than that (2x300 AM, 2x300 Afternoon, 3x300 evening) and my neurologist has said that it can be increased even more.

Keep away from steroids unless you really need them. If you get some now, then it is about six months before you can take them again - so what happens if you have a bad relapse in two months time?

Geoff

Hi Rebecca,

I was told that if used to often the body regects it.

Or you could be cynical and put it down money.

Me i am not sure.

TTFN

Chris.