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Your thoughts please

Hi everyone,

Im at an all time low at the moment with extreme pain and exhaustion. No matter what i do i cant get any relief from the fatigue that affects everything i do. Some of the fatigue is caused from physical activity especially in my upper body which can make me overheat and cause me to be physically sick. The other is inner fatigue which is present no matter what i do or how much sleep i have had.

Along with fatigue and pain i have lots of symptoms , some that cause me concern and some that dont really effect me so much.

Years ago when i was pregnant i had some vision problems,i was seeing the day as foggy when other said it was very bright. I also had problems with night time vision, i sat things in a very dark cloud. Then only recently i have had some blurred vision, it did not last long. At the same time that i had vision problems years ago i also lost the hearing in my left ear, no reason was given for this. Alonf with the pain i get i also expereince an electric shock sensation going through my body, it can be very strong and jolts through me although it is not painful. I also get what i would call a change in sensation to my skin, it feel like something is crawling, at times i have thought my leg and foot has felt numb, At other times my hands have felt llike they dont belong to me and that they have a mind of their own, they feel removed from me for a time. My memory is also affected, i can relate in detail to things that have happened in the past or recent past but i have noticed that i forget things easily in the here and now.

I have some other medical conditions also, crohns, M.E. fibromyalgia, Hashimotos, degenerative spine disease.

Thanks for listening and would appreciate your thoughts

Thanks

Christine

Hello Christine.

I can certainly identify with your MS symptoms. I’ve had mine for over twenty five years. I’ve had some very low times as my ability to cope with MS and general life has reduced over this time. The singularly most debilitating aspect has been the fatigue-every conceivable element of it. For me the only clear way forward is being practical and realistic about everything I do. This does involve a lot of planning and thinking things through. This sounds very dull and tedious but you can develop your sixth sense where such matters become second nature.

I have every sympathy for you as I know how hard it is coping with all this stuff. I wish you well for the future.

Steve x

Hi Christine. You sound very down at the moment and I’m not surprised with what you’re currently going through both with the ms but all of the other chronic illnesses which on their own are very debilitating. Firstly I want to ask you if you’re on an anti depressant. I know many people see them as a drug for weak people but they aren’t. Depression is very common in ms, both because of trying to cope with symptoms but also due to changes in the brain and nervous system. Many of us take them and sweat by them, myself included.

As for your vision, see a good optician. Mine put prisms into my glasses as they help the eyes work together, focusing on the same thing when the signals between the eyes and brain don’t work properly. I still get double vision when I’m tired but it’s so much better now. They’re not cheap but one of my best investments.

Pain is something else that can be controlled with medication. It may take a while to find the right drugs at the right dosages as nerve pain is notoriously very painful and difficult to get under control but there are drugs out there for nerve pain and it can be controlled. Nobody with nerve pain will ever be happy as it affects your mood, destroys good sleeping habits and therefore makes fatigue and concentration very difficult to live with.

My concentration is poor so I have a large calendar with loads of room for notes and reminders, a white board for shopping lists as I use things in the kitchen and a diary and notebooks. They all get used and I still forget some things but my friend and family know I don’t mean to upset them if I forget something. If it’s important they make sure to remind me. I usually manage to laugh about it now but there are times when I get really frustrated too.

If your symptoms seem to be getting worse rapidly speak to your Neuro or nurse. There may be better advice or meds they can give you. Quality of life is very important and at the moment yours doesn’t seem very pleasant. There are counsellors you could see. Feeling down is nothing to be embarrassed or ashamed about, I don’t think you’ll find very many of us who haven’t felt like that. Please chat to someone. If you don’t want to see your Neuro or ms nurse, see your gp. They’re very experienced in these matters.

Take care and make sure you rest.

Cath xx

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Hi Christine, I can relate to most of what you say and my heart goes out to you. As Cath said are you on any antidepressants? I take two little pills each day and they keep the black thoughts away for. Also get in touch with your MS NURSE failing that your GP and talk to them. Show them tis post and ask for help.

Don. XXX

Hugs from Margate

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Sorry i should have said that i dont have a MS diagnosis…just many symptoms without a known cause as yet. I went to see a neuro in Nov and he did some bloods for Mysthenia Gravis, they came back negative for the second time. The neuro was late and i was in and out within a few minutes, i did not have the time to tell him all my symptoms of give a detailed history. I have a follow up appointment in May…whatever i have has been going on a long time with breaks inbetween so maybe it has nothing to do MS at all.

Thanks

Christine

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Dear Christine

What a bloody shame, just remember to breathe! Life sucks BUT my mantra is ‘I can do this’ and you can deal with almost everything if you take it in little bits. I’m not sure this will help but sending M

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Hope it goes better in may…

Thanks

Christine

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