feel like 1step forward 5 steps back any advice appreciated

Everyday living
1

I was diagnosed in November after my first episode in october with loss of movement in my left arm and hand, my leftside lip dropped and burning in my left leg. I had an MRI and as I had other lesions ms was diagnosed. After about a week I has pins and needles in my right hand and foot and was totally fatigued all day.

I couldn’t even make a drink and was in constant pain. Within about 3 weeks I had pain in my right leg and didn’t know if I had relapsed again,. I was very stressed but decided to start betaferon and started on 1/4 dose but 10 mins after injection felt burning in my leg veins.

I went to bed and woke up with severe burning in both my legs and all my symptoms felt worse. I took the next injection and the folliw night had the burning again and in the morning had hand and face spasms so I called the drug company who said they had heard about burning and to stop.

The next night I was sick all night and the following night I had a low body temperature all night. All my symptoms were worse and the pain intense.my ms nurse thinks this is all anxiey related and not the drug. After about a week I felt slightly better but still getting pain and spasms in my left leg.

Over the last few weeks I have had less pain at night, I have been trying to put weight on as I lost a lot and have tried going out the house and although i have had pain after walking this does wear off.

I am still very stressed, my husband has been home from work since the middle of October and is self employed but we have 3 Children who need looking after and I don’t think I could be on my own. I tried taking them to school which was great but had to lie down for 3hrs. after.

On Monday I went to sainsburys and managed the whole shop and was so pleased but that night I was up again with pain in arms and legs which I haven’t had to that extent for a few weeks and spent the next day in bed. I’m not doing housework or anything and feel totally as If there is no hope.

I have been prescribed amitripalyn for pain and stress but I’m to scared to take anything as I can’t cope with feeling worse. I have an MRI next week and then an appointment with the neuro on the 7th Feb to discuss dmds and I can’t even take tablet.

This has been 3 months now and every time I feel I Could do something the pain returns, I feel useless I can walk and use my arms but can’t seem to get to a point where I am having anything of a normal life, I’m lead down most of the day and read posts of people getting on with life but I can’t seem to get anywhere near there especially with fatigue and pain.

I suppose it all depends on the MRI findings but I don’t think I would like an interferon again as I have read in 5% of people it does make people worse even though the ms nurse doesn’t believe this.

And don’t want my kids to see me anymore ill so I hope I can have copaxone but how I’ll cope with that I don’t know. On as daily basis I have pain and pins and needles but can just cope with this and feel like the anxiety is slightly better.

Could this pain get better after walking as I don’t feel like I can go out again as I can’t deal with the pain. Please help I’m desperate and can’t see a way forward. Zoe

2

zoe

i would love to reply but i cant read ur post. can u put breaks into ur words please? i know u cant now but in the future…its just a blur-which i know is my prob and not urs!

maybe a mod will break it down for u (and me!)

i guess u are not long diagnosed-happy to help if i can

ellie x

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Thank you Ellie I would really appreciate advice.

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Dear Zoe,

I’ve taken the liberty of adding a few paragraph breaks to make your post easier to read. I’m sure there are many people on this forum who will be able to offer words of support and advice re: taking medication.

It sounds like you need somebody to talk to- and I’d highly recommend giving our Free MS Helpline a call, as our staff are

(a) lovely

(b) trained to listen and highly informative

(b) able to offer helpful and professional advice.

On a personal note, my mother was very ill when i was a child and it only vaguely bothered me. What was important was her attention and that she was there. Yes, i’d have preferred it if she’d been running round the garden rather than in bed, but in many ways it meant I had an audience with her. That was hugely important.

She was well able to shout at me from the bed- and even though I could have walked from the room- I didn’t. Every situation is different, but just wanted to share that, as it’s easy to project stuff onto kids that isn’t there. I loved my mum, ill or not, it was her love that mattered, nothing else.

Stewart (admin)

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Thank you Stewart and Zoe I will read it now.

Pip

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zoe

i see stewart has made it easier to read. i have read ur post and have had a few thoughts but i need a sleep. i promise to reply later. meanwhile an indication of my reply-i am single mum of 4,dont do the guilt stuff as its a waste of ur precious energy! theres is a way,the real magic lies not in seeking new landscapes but in having new eyes. chat later.

ellie x

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Zoe.

Firstly you are not useless you are ill.

I would definately take Stewarts advice and talk to somebody,even if you don’t want to talk to the helpline staff it would really help to talk to someone.Saying things out loud is often a good way to settle stuff in your mind,and put them into perspective.

Have you talked to hubby/kids about how you feel and your worries about how you think the ms might be affecting them?

As Stewart says their replies might shock you.My kids are grown up but still at home,but they still love knowing I am always at home–however old they get they still like the security blanket of knowing mom will be at home.

Constant pain is very debilitating so I would think seriously about addressing this.Yes many of the neuropathic pain killers take a while to adjust to,but as you are in a low place anyway and hubby is about to help with the kids it sounds as good a time as any to start them. Start low and give your body a good chance to get used to the low dose before increasing.

Have you got an ms nurse and has she at any time suggested steroids?

Housework police will not visit so I would advise you look at your daily life and see what is most important to you…you have a limited energy reserve so if for example (I dont know how old your kids are) doing the bath and bedtime story is what you want to do,then look at daytime resting as you doing an important thing to ensure you can do the bath etc.

Shopping can be done on line to leave you energy for anothing thing you really want to do…

I know it feels at the moment it will never end,but trust me it will.

As to your neuro appt please have a list ready of your concerns and the outcomes you want to achieve.I have to say I use copaxone and have no issues with it.The connections helpline that comes with it always has someone on the end of the line when you have queries.

The copaxone nurse visited monthly and told me which days she manned the helpline,but she also gave me her mobile number and one the one occasion I txt her she responded the same day.

I will stop now as otherwise I may ramble forever.

Please look at addressing your pain and be kind to yourself.You haven’t asked for this to happen to you,as others say its a bit of a speed hump to get over but you will

Pip

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Hi Zoe, sorry your feeling this way I guess your newly diagnosed and it takes a while for everything to sink I . I can’t comment on copaxone etc as Im PPMS so not on those drugs. However as regards our pain and pins and needles well I’m in constant pain and have the pins and needles so appreciate what your going through. I was prescribed amitriptyline, I the you should start taking it and see how it goes, tbh it wasn’t much use for myself but many people find it very good so well worth starting. There is also Gabapentin and pregabalin both do the same just depends which one you tolerate, personally I use pregabalin and im on 300mg twice daily but you normally start on a lower dose, this has definitely helped with neuropathic pain, it hasn’t took it away altogether but it’s so much more manageable. I was also referred to a,pain clinic where I,was given Bu Trans morphine patches, these are put on for a week and there brilliant. Just a few ideas and maybe when you see your gp or ms nurse you could ask about them. I don’t know how old your children are but I know it seems hard but kids are amazing and take these things In there stride, my boys were 7 and 5 when i was diagnosed and are now 24 and 27. Take care and if you need to vent you know we ae here for you.

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Thank you pip, my husband is brilliant and is doing everything and is very supportive and my children are 14, 13 and 8.

They have seen an approvememt in me and my 2 youngest think I’m getting better but my 14 yr old reads everything and is a worrier, like me.

I need to get the pain under control, but I read everything and look at all the side effects and think the worse will happen.

I know I need to get to a point where I can take medicines and hopefully a DMD and I know I maybe in a worse place next year so I’m trying to start doing things but it seems I get to a point and my body says no.

Do I go out and risk being in pain all night or do I carry on resting.

Zoe

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Rest

I take Baclofen,Gabapentin and amitripyline all to try and make the pain manageable,which on the whole it does.

I accept it will not go completely, and to be fair when you are resting you are not distracted so it appears worse.

Distraction while not physically doing anything eg on here,watching tv or reading is what works for me.

It is wise to be aware of the drugs you are taking but like your unique ms your reaction to each drug is also unique and the drug companies have to put everything on those sheets. All of the above have big leaflets but most side effects wear off after you have been on them a while anyway.

Ms causes enough stress by the nature of its unpredictability,dont let fear of what- may be - drug wise make you miss out on pain relief.Being less uncomfortable physically will help you to be mentally stronger.

Take care all of you.

If your whole family is involved in all the boring mundane household stuff, and begin to see and do things that need to be done without even asking, you can also rest assured that they are developing into well rounded and compassionate young people.

Another parenting job well done.

If your oldest is a worrier and is searching for info,do impress on her/him that it needs to be ms trust/ms society sites.They both do booklets for kids have you downloaded them?

Hang in there…I have gone from taking early retirement to clearing a huge amount of snow of the drive.It does get better.

Pip

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Hi Zoe I really hope things get better for you soon ,my children are same age as yours , it is so difficult for us trying to explain things when they are different ages. Keep going , you will get through this tricky time. Hope x

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hiya zoe

my kids are now 10,11,17 and 19. i have been diagnosed almost 8 years so they have all grown up with a faulty mummy. i say ‘faulty’ they just say mummy. stewart is completely correct when he suggests not to do the thinking for them.

i write in lower case cos can only currently use one finger…pip has already covered alot in her fab replies…

various carers have been in/out over the years but just now we muddle through…17 year old sorts coal fire before going to school,one gets coal in and 3rd goes to shop for milk/bread if required. as adults it would be easy to assume that i should have a carer in morning-probably right- but its not all about me (an easy trap to fall into with anyone with ms) they want to help-they dont want to leave me cold and hungry for 6 hours. it was suggested to me that i had a carer at mealtimes-possibly. but in reality one of them makes me sandwich for at lunchtime. once when my 11 year old daughter offered to help me with evening meal i snarled at her that i would manage. i will never forget the look of hurt on her wee face. now i sit in the kitchen and supervise her as i would without ms. its called teaching them basic skills. (my sons get involved too)

delegate-it teaches them loads! my youngest loved his ‘job’ when he was 3-emptying the bins! you may not appreciate what i am saying immediately but my kids are more understanding than most their age and that can only be a good thing. in shops for example they automatically give more room to those in a wheelchair or those with sticks. if they see folk shouting they are inclined to wonder why,are they in pain or question why they are angry.

your husband sounds grand-just you dont fall in to thinking that u are useless because he does the physical stuff. just like stewarts mum-you have a gob-use it! neither the kids or hubby can read your mind-tell them what u want,or dont want.

its an old cliche but communication is the key. honesty too. from all of the family. my kids know re all my problems cos they have to live through it as well. trying to protect them from whats really going on usually back fires cos no matter how bad the truth is,leaving their minds to runriot on their observations/guess is worse.

they (my kids) taught me that even nothing works properly they love me unconditionally and anything/everything is only a problem if me/they make it one. there is always an answer-sometimes it just takes a bit of abstract thinking from us all.

take care and it will all work out-i know you will find your own way through this.

ellie x (mum of 4,soon to be granny!)

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Thank you everyone for replying, I have started the amtripilyn at night and it does seem to send me into a deep

Sleep although I’m waking up in more pain probally as I haven’t moved much in the night. As this is my first attack can this get better or once you get pain is it always there . thanks zoe

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hi zoe

i read your post and all the replies, so now i’ll add my bit.

i’m so glad you started amitrytiline its an effective med and will help with your anxiety as well as pain.

don’t be scared of trying copaxone, i’ve been on it for 4 years and havent had a relapse.

my main problem now is my bladder which is driving me nuts.

take care

carole x

15

Just have to update as I have just spoken to my ms nurse.I told her what had been happening regarding doing more and pain at night. She made me feel that she was questioning my amount of pain and said that I have to do more as my body will get used to not doing anything and that I need to break through this. I thought that was what I’d been doing, as I tried doing more and ended up at night in pain. She also advised to take b12 as although my doctors said my level was OK at 300 she said this could be causing the fatigue as it could have dropped again.I have as MRI later today and an appointment on the 7th Feb with the neuro but in the mean time any advice as to whether to try walking more not. Thanks zoe

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I have to say that I disagree with your nurse. Three months is not that long for a relapse and there is no way that it is long enough for your body to get used to not doing anything!* In my experience (and I have a feeling most people on here will agree with me), trying to push through a relapse will achieve nothing. The best thing to do is rest - seriously, do as little as possible! Leave the walking for when you are better able to do it.
[*An example: I spent a lot of 2005 in bed because of relapses, but I got my black belt in taekwondo in 2006.]

The B12 thing on top of this makes me suspect that your nurse either isn’t very experienced or isn’t very knowledgeable about MS (which is a bit weird!). Fatigue is very very common - apparently the single most common symptom of MS - and is often horrendous during relapses. Yes, B12 can be a factor in this, but even MSers with superhigh B12 levels can have bad fatigue, because it’s caused by MS, not B12 deficiency.

I’m glad you’re giving amitriptyline a go. It doesn’t suit anyone, but some certainly find it very effective. I hope it works well for you.

Absolute filtered word about Betaferon. There is a small % of people who can’t tolerate each of the DMDs, but that doesn’t necessarily mean that you won’t be fine on an alternative. Betaferon is a different formulation of interferon to Rebif and Avonex, but Copaxone is completely different so it may be a more sensible choice. However, it seems you are having quite a lot of relapses in a short time so perhaps your neuro will suggest Tysabri or Gilenya? I guess that will be a high priority topic for your next appointment.

It might be worthwhile also discussing pain meds with your neuro. It’s important to know what’s causing the pain, e.g. is your’s all neuropathic or are you also having muscle spasms? If you are having spasms, then you may well need a muscle relaxant as well as the amitriptyline. (Some people find amitriptyline helps spasms, but it’s not the normal choice of med for spasms.)

Is your GP supportive? If he/she is, then maybe try to enrol them in working out what’s best if your nurse isn’t going to be a lot of help?

As far as children go, my two were 3 and 6 when I was diagnosed more than 14 years ago and, if I got them to read Stewart’s reply to you, they would agree with it completely. (I know this because they have told me something very similar.) Please don’t worry about it - just love them, and the rest will work out.

Karen x