Dealing with fatigue and tremors

I was diagnosed last August with relapsing remitting MS. Before I was diagnosed I suffered with facial numbness, loss of sight in 1 eye and chronic dizziness. It was a relief to be diagnosed and since then my symptoms have changed. I have awful fatigue, like I struggle with conversation, staying awake at the wheel of the car and walking anywhere. I have been battling through but I can’t work out if I have always been this tired… I have also developed a tremor in the last month in both of my hands which means it takes a lot of concentration to use cutlery, writing and using a mouse on the computer. My memory has also become spectacularly bad when I have always been a very organised, logical person. I am finding it quite upsetting at the moment that no matter what I do my body is failing me.

I took Tecfidera for a while which stopped all disease progression but after getting fed up of the daily side effects I stopped taking it and am now waiting to start Plegridy.

I know I will be seeing huge improvements when I start it but the waiting is getting me down. Especially as I am finding work extremely stressful and no one appreciates that my illness makes daily tasks harder for me.

I try not to talk to my family about it because it just gets them down and I recently came out of a 4 and a half year relationship so I feel like I don’t have a support system. I am feeling pretty down generally.

So what I actually wanted to ask was has anyone been to their GP (all the MS nurses are on holiday for the next couple of weeks) about medication that could help with the tremors and fatigue in the mean time to tide me over until the Plegridy takes affect?

Hi Gina,

Ours is a bloody awful condition; people don’t understand it because they cant really ‘see’ it - how many times do you get people say ‘but you look really well’ and your response is to say ‘thanks’ when every bit of you is fatigued beyond exhaustion because you have to concentrate so heavily on keeping your hands and legs still, even with medication on board some times. You have my utmost sympathy - I get tremors in both hands and my legs want to walk off without my permission!!

I really hope you get on to Plegridy soon, and obviate some of these horrid side effects.

As far as I’m aware there are no specific drugs for MS tremor, but its worth chatting to your GP to see what they might be able to offer to combat this. As to fatigue, some swear by Amantadine though it doesnt work for everyone. There used to be a drug available for the same thing called Modafinil, but I believe this is only now prescribed for epilepsy.

The MS society has produced booklets on managing fatigue, and tremors; they’re free of charge and worth a read to see if some of their pointers will help.

MS produces terrible downers at times -I think we all go through this at some stage, and its a real battle, so it is important t talk about the way you feel. If you cant talk to your family, perhaps a sympathetic friend can help. Your GP and or MS Nurse might be able to refer you for some Cognitive Therapy - a ’ talking’ treatment with a counsellor that some find really helpful.Its also nice to come here and have a damned good moan, sometimes; we’re all in the same boat, we all understand, and everyone will listen and provide virtual hugs!

M x

Hi Gina

I’m sorry to hear you didn’t get on with Tecfidera. But I feel the need to warn you that Plegridy isn’t going to give you positive improvements. Basically all the DMDs are designed to reduce relapses and reduce the severity of relapses. Some (eg Tysabri) often give you some positive improvements, but it’s not a good idea to start any of those DMDs with the expectation of improving symptoms.

As Minxie said, Amantadine is the only drug that is currently easily available for MS fatigue, but you may even struggle to get that from your GP. Usually people are initially prescribed it by their neurologist and thereafter the GP. Equally, any drugs to combat tremors would normally be prescribed by a neurologist perhaps you have an MS nurse who you can talk these things through with? Or a general neurology nurse? Ultimately, you can always talk to your neurologists’ secretary and get a message passed through for him/her to prescribe something to help.

As well as the info on this site, have a look at https://www.mstrust.org.uk/a-z/fatigue

Sue

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