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New Pains

Hi Everyone, Approx 8 weeks ago developed pain in my left shoulder it is now down my left arm,im constantly saying ow!, this is the opposite side to my MS numbness & weakness.

It is also at the back of my neck and head constantly, today my head was literally too heavy to hold i desperatly needed to have my head supported. I retreated to my car during lunch break today so my car seat headrest could take the weight for 15 mins.

I am struggling to get up from low seating and lying position it hurts so much and i have no strength, i now need help to get up i feel so hopeless.i cant sit in an upright seat for long as it hurts my cox’s . im also now suffering from restless & hot legs at rest.

I have consulted my G.P on 3 separate occassions during this period. I have been given ibuprofen gel and paracetamol for the shoulder it relieves the pain for at best 30mins, I am once again being told to come back in 2 weeks if no change.

Can anyone relate & advise I’m tired of the pain and feeling I’m not quite getting heard with the G.p. I am going to contact the MS physio and ask for advice tomorrow. Would appreciate your advice.

pauline xx

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Hi Pauline

Sounds as though you may need medication if it is neurropathic pain, I take amitriptyline which helps to a degree, but there is also gabapentin or pregablin. Do you have an ms nurse you could contact, who would inform your gp for a prescription, if you don’t have one, ask your gp to refer you.

I really do understand about your head needing support, mine is always worse when I am tired, stressed or hot. Physio gave me a neck collar, but the ms nurse said not to use it too often as it would weaken my neck even more. Its a catch 22 situation really, but I do wear it when I need to.

Perhaps the physio could sort something to help, I would definitely ask, its not right that you are just left to get on with it.

Wishing you all the best, let us know how things are.

Pam x

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Hi Pauline, I agree with Pam… you need a drug for nerve pain.

But also I’m wondering if it’s what is called ‘secondary pain’.

Primary pain is pain caused by the MS itself… secondary pain is when, because of MS, we move out bodies in ways that put pressure on muscles… for instance if our gait is poor we can get muscle pain from putting too much weight on one leg which causes pain in the muscles.

So with you, because you have numbness and weakness on one side of body, you are putting extra stress on the other side of body, thereby causing pain.

I think you will need to see a physio to work out if this is what’s happening… and get some exercises to improve it.

Your GP, neuro or MS can refer you for physio… if that’s what you think it might be.

In meantime, I would definitely ask GP for Amitriptyline or Gabapentin to see if that relieves it… if it does it is more likely to be nerve pain.

Pat x

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Pauline both Pam and Pat seem to be on the right track I think. I injured my neck and trapped nerves and the pain you’re describing sounds so familiar, it sounds very much like nerve pain and should be investigated if it’s so severe. I’m not trying to panic you. I’m definitely not saying you’ve hurt your neck too but you could well have a trapped nerve though there could be so many other reasons for it, for example you might have strained your neck or just have muscle spasm that’s putting pressure on.

You can’t carry on like this hun, you need analgesia targeting nerve pain as the others have mentioned and just to be seen to see if there’s a cause. And I’d be wary of using a neck brace, when I had a new disc in my neck I went home the following day with only a plaster, they’re frowned on with many medics as they can cause weakening of your muscles. Just check before investing in one.

And make sure you get enough rest, have you considered cutting your working hours as you seem to be having a hard time of it.

Take care and please let us know how you get on.

Cath xx

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Thanks ladies for your insight and support, I contacted MS O.T to talk she is asking physio to visit me, seen the g.p this afternoon I’ve been given pregablin I’ll see how I go on them. I refused them back in April cause they made me dopey, i dont care now it’s surely better than this pain. It also looks like I have a water infection I had no control over my bladder at work today luckily no-one was around I was On my way out, I felt like crying. The dip test showed I had blood in my urine so also on antibiotics.

I have my 6 month appt with MS nurse mid Aug Pam so not too long, Yes Pat it looks like secondary pain I’m pulling myself up the stairs with both arms on the handrails, lifting my leg with my left arm over the bath etc etc. Work is taking its toil on me Cath, I’m debating what to do at the moment, I can’t cut my hours any more than I have I wouldn’t manage the workload. My mind chatter is saying quit!, I will lose my house as well, but I know both are doing me more harm than good.

Thanks for your time and help

Pauline

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Hi Pauline

Have you had an assessment by the ot done on your home? If not give your local adult social services a ring and ask for one, as they will look around and help get adaptations done to make life easier for you.

Pam as

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Hi Pauline,

the others have given you such good advise, there is nothing I can really add.

you have some big decisions ahead regarding work especially if it involves your home too. its is hard giving up work as all the others, that have done, will tell you, however if my memory serves me, which it rarely does, I think I am right in saying that when we have discussed this before everyone has said that after a while they have realised it was the right thing to do.

you say you don’t have an appointment with your nurse for a few weeks, but you really do seem to need some help. I was wondering if you could call or text her, failing that could you speak to your GP?

hope you will soon be feeling a little better, good luck!

Nina x

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If you are worried about mortgage payments maybe now is the time to take stock about quality of life. Check with your local council about the disabled accommodation they have available. Most councils have bungalows and flats. The sad fact is the government will pay your rent but they won’t pay your mortgage, except perhaps interest only. I would pay a visit to Citizens Advice they will give you the facts.

It is a very difficult time for you, if the meds help you will be able to think more rationally about your future and what you should do about work etc.

Good luck I hope things work out for you.

Jan

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Hi, I have recently registered for level access housing , i have had a home O.T assesment should have a stair lift and level bathing facility since my accommodation is on a short hold tenancy and tied to employment the council &landlord will not fund adaptions to the property which is understandable. My employer is a social housing landlord… Ironic really!

thanks guys for your thoughts. Xx

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Pauline as Nina and Jan have mentioned, you have some huge decisions to make. I had to medically retire from nursing just over a year ago. I was heartbroken, made worse by the fact that I finished my degree in nurse mentorship a month before I went off ill and never got to use my new qualifications doing something I loved and was very good at. Once I’d been retired for a while it sank in just how I’d been struggling and making my health much worse.

This decision must be much harder for you with your house being at risk. You’ve managed so well up to now to do so much and all I’m trying to say to you is don’t let guilt drive you to stay in work, you didn’t ask for this illness and there is life after retirement. I hope the Pregablin works for you as nobody can think clearly or function properly with nerve pain. Even if it makes you drowsy, keep with it, it wears off. Nobody should have to live with nerve pain as it’s very debilitating.

Take some time off work while you get over this hiccup with pain and infection and have a think about your decisions. Remember we’re all here to help and support you where we can. Please let us know how you get on.

Cath xx

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That is a bummer Cath! My work style was used as a good example of best practise & i was carrying out mentoring for new staff this took a head dive 18 months ago,back then I had no idea why I was failing to do what was previously so easy. Now no-one asks me for assistance it’s so sad.

One thing I can be sure of is I will not be made homeless, like so many poor people of late With all the H.B & benefit cuts I can’t believe I live in G.B not sure it’ts Great for its citizens anymore.

Anyway: the pregablin are killing all pains, but they are taking about 2hrs to work. I was told to ring the surgery today for urine test results I rang at 5pm receptionist after a few seconds said the G.p hasn’t seen them yet, ring back tomorrow, I’m taking this as there is a problem! I’ll see tomorrow. I’ve been vomiting this morning could it be the pregablin?

Pauline xx

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Pauline BIG HUGS you sound like you need them hope you soon back on track. Don

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Pauline BIG HUGS you sound like you need them hope you soon back on track. Don

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Sorry Pauline, I don’t know much about Pregablin so I couldn’t say whether vomiting could be a result of it. I’d imagine it will have it listed as a side effect, I’m sure very few haven’t, I remember as a student studying all common drugs we used to list that in every exam as a side effect and it wasn’t often wrong.

Yes, it is frustrating at work when you’re treated differently once you get ill. I remember clearly the attitude I got in the last couple of years of employment when I was often off sick, physically couldn’t manage to do the work, had dizzy spells and was clumsy. What I didn’t know at the time was that I’d injured my spinal cord in my neck (which the surgeon said should have had me in a wheelchair and unable even to dress or feed myself) and I had ms. The fact that they were so nice to me after dx didn’t help at all. They treated me like a hypochondriac, constantly criticising and tutting, it was awful. But I was still gutted when I had to retire, I’ve been a nurse for over 20 years and it was all I knew how to do.

So I can only imagine how things are for you. All I can say is that retirement isn’t bad once you get over the shock. My work ethic was always very important and I was certainly as bothered by the inability to do my job with the high standard I set myself as I was by the attitude of many of my colleagues. It is very difficult but Pauline you have to look after yourself. If work is affecting you physically and emotionally you should consider retiring. Talk it over with your family, gp, Neuro or ms nurse, my gp and employer both sat me down and explained why I should stop working and looking back, they were right. It’s not as if you’re being lazy or just giving in, you have a chronic condition that’s very debilitating.

It is your decision and only you know whether you’re coping with your schedule and workload. All I’m trying to do is reassure you that if you’re not coping, there are alternatives. Yes, it means battling the benefit system and for you, possibly moving home. If you have a union contact them for advice, mine were fantastic during my transition. And as you know, you have loads of support here. If I can help at all, let me know. Sorry, I’ve written an essay but your post made me think back to my last year’s and months in employment.

Take care

Cath xx

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Hi Pauline,

Hope the visit to the gp went well? Did they think the pregabalin could be causing the vomiting?

Sending you hugs.

Nina x

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Hi Pauline

Hope today is better for you, and your gp has been able to help.

As the best there have said, it is your decision about work, but if you decide to finish, please don’t look at it as giving in or being lazy, cos it certainly isn’t, you must put yourself first.

I remember having to make that decision, and it is difficult, but with hindsight it was definitely the right thing for me.

My best wishes

Pam x

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Pauline, just to add my twopence worth, if you do not get an offer of accessable social housing you should make an appointment to see MP. Details should be online (they call these surgeries for some strange reason).

I also used to work in social housing and a letter from MP would really make a difference.

Hope you are ok now and stopped vomiting?

Pat xx

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Hi guys,as usual you all talk a lot of sense I can’t thank you enough. Xx

Just nausea today. Didn’t get my urine test results g.p off today, I’ll get them on Monday.

could have pushed for another g.p to look, just couldn’t be bothered.

Cath you make absolute sense thank you.

Pat I have a feeling you and I had the same job, I could be terribly wrong,just working on snippets.

yes when I get a bit of energy to fight back in me I’ll do all I can with housing.

Pam, your right I feel like i maybe becoming a quitter, maybe I’m exaggerating just so I can bail, I know it’s totally stupid but that’s what I’m thinking at the moment.

pauline xxxx

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Hi Pauline,

I have a lesion in the area of my brain that induces nausea and vomiting, if you get this nausa problem regularly I was wondering if it could be the same thing?

Three Drs said it wasn’t MS but my neuro proved them wrong, he gave me tablets called Domperidone…thought he was offering me champagne for a moment !! MS Brain!

Good luck with the housing, you’re not a quitter, we all doubt ourselves at times but don’t let the MS elf talk you into believing these things. You have done well to carry on working but think of it this way…in the long run the stress and the added exhaustion will only make you worse.

thinking of you,

Nina x

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Thanks Nina, you could be right there, I have been vomiting for no apparent reason over the last year but it only tends to happen 2-3 times a month always mid-morning I will mention it at my nurse appt.

regarding the Housing and Work for whatever reason I do tend to give myself a hard time I’m hopeless at making decisions and tend to go the long way round. Thank you for your encouragement.

Pauline xx

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