secondary chronic fatigue

[smilingjane]

Hello everyone

I have recently been diagnosed as having secondary chronic fatigue due to lifelong sleep disorder (sevear retracted estless legs and arms 24/7)

My symptoms are the same as ME except no glandular fever. I am wondering if anyone else on this site has been prescribed or takes any stimulants to help regain cognitive abilities. I am desperate to get back to work.

Do GPs prescribe stimulants for CFS?

I should add that I take low dose opiods (longtec) to enable me to sit and lie down and therefore sleep.

best wishes to all

Jane

[Silver-Moon]

Hi there Jane. Hope you are ok 👌 despite your health issues. I also suffer with chronic fatigue due to other underlying problems. Fatigue is horrible, isn’t it? I am not 100 % sure of the rules on how stimulants are prescribed but I think that currently in the UK, for example, you either have to be diagnosed with ADHD or narcolepsy to get prescribed stimulants on the NHS. But in some cases, patients can be be given stimulants as an off label medication if they proof their attention or fatigue issues are causing them issues. But GP’s generally don’t give out stimulants initially. Stimulants have to be initiated by a specialist, such as a Pyschistrist or neurological doctor. I was lucky that years ago a shrink tried me on modafinal briefly despite not being diagnosed with adhd or narcolepsy. But he was quite a creative minded kind of shrink that took the chance to give me a mild stimulant. Some specialists will not even give out stimulants- so it all depends on who you get really. I have asked my current specialist if she try stimulants again as I’m really struggling with poor attention/fatigue/lack of motivation despite taking anti depressants and doing gentle exercises and pacing myself. I think personally stimulants should be a last result but I’m sure you already these. Perhaps ask you GP to refer you to either a chronic fatigue clinic or neurologist for more specialist support if your fatigue is bothering but if you do get specialist medications it will be very hard getting them sadly - you would probably have to prove you have exerted all other options first. Some people have had good benefits from anti depressants or vitamin D or vitamin B complex supplements - so, if this something that you may haven’t tried already then give it a go. Avoid using high doses of caffeine as that can make fatigue worse funnily enough. I find eggs 🍳 make me feel more tired after I eat them so I feel certain food or drinks can sadly cause or increase our fatigue levels. But I am sure you already this. Sorry to hear you suffering with fatigue. Take care. Xx 💋

[smilingjane in reply to Silver-Moon]

hi piano lady.

Yes Fatigue is dreadfull. I feel that I have lost the old Jane! I hope to meet her again though. Just got to work on it 😉

Thank you for all your advice. I am on all the rec. vitamins. Thing is as I am on low dose opiod meds that makes me a bit duller than usual so I might just suggest to Gp that stimulants would help to alleviate the Opiod complications. As well as help with the CF.

I have an appointment coming up with a Neuro. I will bear in mind what you said about food. Interestingly I used to love a glass of wine. Now it makes me feel nauseous .

I guess Ineed to keep searching for what is causing the CF. I have ct scan 2moro maybe that will show something up.

Its crap to feel so I'll but to not have a proper label if you see what I mean!

How do you cope with your illness?

Jane 😊

[Hidden]

+1 on what piano-lady said. I asked my GP about Modafinil but he said he would prefer not to go down that route. I trust the guy so left it at that.

Since then I have thought on it a bit more and figured that you are putting more stress on a body that needs rest and relaxation so it probably isn't a good thing.

Mind you I wouldn't mind some amphetamine for important days!

[smilingjane in reply to Hidden]

He he I know what you mean Raffs😏

Thing is with me, cause I am on Opiods it makes me slightly duller or flatter than I was. I think there may be a case for me asking for something to alleviate those complications.

How do you cope with your illness?

Thanks for replying

Jane 😊

[Hidden in reply to smilingjane]

Not well at times! I lost my job and although some times I am with it and up a lot of times I doze or sleep my way through life. RLS plays a b1tch of a role in it all stopping me resting when I need to and destroying night time sleep.

I notice cromanovska saying they are more up and about from March to September as am I. I wonder what that's all about?

[smilingjane in reply to Hidden]

Maybe sunshine or seasonal disorder works in with the mix. I am so sorry you lost your job. That`s what happened to me.

Do you manage to do anything enjoyable or creative like hobbies or even do you have any interest? This illness sucks everything out and can leave us feeling absolutely hopeless. Do you have any meds that help?

I am thinking of joining a support group ...

Will see.

Meanwhile

[Hidden in reply to smilingjane]

At the moment I am struggling with low mood. Just fed up swimming against the current and getting nowhere. My life has regressed this past few years, I was thinking one day I was listening to some 80's & 90's music here I am 30 years from the songs came out and my life has much less opportunities at progressing. Wasn't a nice realisation/

When well enough I play some music and do a little creative writing. It's not much but better that staring at the wall or ceiling.

Not been one for joining groups so tend to spend a lot of time alone - not much to tell people "Well what did you did since I last saw you?" Slept, suffered and shat! Not that exciting!

Good luck with the group.

[smilingjane in reply to Hidden]

Well you belong to this group!

Still communicating with people. Just differently, not face to face.

Would you consider antideps? or have you been there and done that ...

And you are getting in touch with your creativity .... 🌷

[Hidden in reply to smilingjane]

On principle I wouldn't want an antidepressant as it would only give me loads of side-effects and do nothing to treat the low mood (kids fighting ill health pain, discomfort, no work, no purpose, etc.

THAT SAID - I am a firm believer that there are no atheists in a fox hole and was offered and accepted them from the GP (this was before I was depressed!!!).

Once I was coming down with ME and the GP didn't know what was going on they offered a number of antidepressants. I can only assume they were operating under the working hypothesis that I was depressed.

I tried 4 different types none of them lasting longer than about 4 days as they drove my RLS up the left and I had to stop.

I doubt that until I can regain some control over my life and steer it in a productive direction I will have to struggle with the mood. No matter how upbeat I can be - a bad week of RLS can end that and its back to digging yourself out of the hole again. Oh the joys!

To make matters worse I seem to have picked up a stalker on the RLS part of health unlocked who seems to be trying to cause issues for me so even in my small world there are those a$$holeS that will go out of their way to make it more difficult and smaller! It is terrible as I love to help people out, it makes up for not getting myself sorted, but I don't need any other stresses in my life. Ah well, what can you do

Keep frosty

[cromanovska]

Absolutely not! You would use artificially induced energy and when the meds wore off you would feel twice as bad. The best thing for ME/CFS is rest. You have to consider changing your whole lifestyle. I'm 25 plus years in and I hibernate 6 months a year. I live in my bed and get up for short periods to have a bath or get food. From March to September I am gently active, A lot of people couldn't do it but it works for me... Good luck

[smilingjane in reply to cromanovska]

Cromanovaska, thank you for your advice.

It absolutely totally makes sense.

The only difference in my situation is that the Longtec, (which at the moment is my saviour, although I dont want it to be long term) - does slow my mental processes down and I need/ to get back to work.

I became really upset today when I couldn't follow a basic knitting pattern, I used to make my own.

I am hearing you though. Do you think there may be some seasonal disorder wrapped up in your illness?

Bring on the sunshine and I hope you start to feel some relief.

Are there any meds at all that you use or is it all diet and pacing etc?

Jane x

[fidders]

Hello all I know is rest rest sleep sleep and eventually some brighter hours days or at one point almost a week will emerge. I too have restless legs. I was prescribes mainly for the Fibro pregablin which helped me with those pesky twitching restless legs. I take an antidepressant although I still crash and feel very low when I do . Since becoming ill it just one thing after another I have a dread of going to the GP as I feel misunderstood and I can’t seem to explain properly. I know there is nothing they can do so I tend to just shut up and put up . I live a very quiet life but I am learning to embrace it to understand that this is what my body needs and just go with the flow. I don’t alway succeed I must admit but I try .

[smilingjane in reply to fidders]

Hello Fidders

Good to get your post.

Calming to hear of your way of accepting who and how you are.

That's something I can learn from. I tend to brush stuff/feelings etc under the carpet and pretending things will be better soon. I like the way you talk of embracing and accepting how you are.

I think the idea of a quiet life is a healthy idea. (for you and I think for me too).

I know what you mean re GP visits.

It is hard when you know that they probably haven't a clue what is really wrong with you.

All we can do is research ourselves and ultimately listen to our own unique bodies.

I hope you are managing to listen to and maybe read good stuff to enjoy life during g resting, (if you can)

Take care and love

Jane x