Illness progressing - any advice for the newly sick with ME ?

[Dechi]

I have had ME since 2013 and it has stopped me from working in june 2015. So about 4 years now. For those who have had ME longer, is there anything you would do differently if you could ? If you knew what you know now, would you treat yourself differently ?

I am not working, and basically resting and not doing much. I am at a functioning level, but feel my condition is worsening. I have to go back to work soon, and this is putting a lot of stress on me. I don't have a partner or husband to rely on, just myself. Money has to come in at some point.

I had a few new symptoms lately : a headache that lasted 3 days (started after I put a new cream, very lightly scented, on my face, which I quickly discontinued), tremors in my right thumb, the one used to play cards on my tablet, blurred vision happening frequently and lasting for many hours and the one thing that frightens me the most, a shaky feeling inside and lactic acid sensation both growing stronger. My muscles feel weak very rapidly because of the lactic acid. As soon as I use any muscle for more than 2-3 seconds, I feel a weakness/tiredness set in and I have to stop the movement.

For now I am taking something that helps me with crashes, which I am happy about. I want to start taking LDN also, I will ask for a prescription when I see my doxtor, in a few weeks, I obey the pacing rules, I exercise very carefully (and very little), I measure my heart rate variability and I try to eat well (gluten free, dairy free, no refined sugars). Although I have been cheating during the holidays and have to go back to a more strict regimen. I also work on anxiety management and sleep improvement.

I guess I am loooking for reassurance. I feel the illness is progressing and hat I am losing control, and it is scaring me.

Any tips welcome !

 

[Hutan]

Hi @Dechi
I've had ME for about the same time as you. No doubt you have experienced, as I have, the coming and going of symptoms and the periodic increase and decrease in the severity of them.

I find that I and my son are worse in the winter. I'm not sure if it is the extra energy we have to expend keeping warm that counts as exertion, the possibility that viruses thrive better when our bodies are cold or the lack of sunlight or something else or just a coincidence. Have you observed that pattern at all in past years?

Regardless, given the timing of your worsening, it might be worth testing your vitamin D levels, making sure that you are keeping warm and exposing your skin to sunlight (not through glass). I realise that the last two may be impossible to achieve simultaneously in a Canadian winter. There are lamps that emit light similar to real sunlight. And I think you should feel hopeful that the coming of spring will somehow make you feel better.

There's some recent tips on other threads about how to head off the lactic acid - perhaps you have seen those?

That's all I have to offer, I'm sorry, other than my best wishes. The imminent return to work is certainly a problem - you don't sound anywhere near well enough right now. Have you looked in to how to qualify for a sickness benefit?

 

[Dechi]

@Hutan Thanks you for the reply. Now that you mention it, there seems to be a pattern to the illness worsening in winter. Lack of sunlight, cold, having to shovel and break the ice on the doorsteps and car are probably part of it.

As far as vitamin D, Dr Hyde told me he had never seen someone with such high levels. I am taking a multivitamin, so I guess it works.... ;-)

I was thinking about a special lamp, but never got to it. Maybe I should.

As far as lactic acid is concerned, I haven't found anything that helps. I am still looking because this is such a problem for me, and getting worse, no doubt. I will look some more on the forum, maybe I missed something. There is Savella, maybe, but there were side effects to it I didn't like (like aggravating tinnitus, which is already keeping me up at night so I won't take the risk).

Concerning disability, I am considering it, but the amount of money I would get would be small. I figure before resorting to that, I would have to at least try and go back to work. Problem is if I go back part-time I wouldn't have enough money to live on, and if I go back full-time, I seriously compromise my chances of success. It's a lose-lose situation basically... :-(

 

[Cheesus]

As far as vitamin D, Dr Hyde told me he had never seen someone with such high levels. I am taking a multivitamin, so I guess it works.... ;-)

How high is your vitamin D? It is something you can have too much of.

 

[Dechi]

How high is your vitamin D? It is something you can have too much of.

I will have to check and come back.

 

[hellytheelephant]

I am definately much worse in Winter too.
It sounds like you are already doing a lot for yourself- you are being very active in not preventing yourself from getting worse.
would say best advice: learn not to push beyond what you can do and to ignore other people's expectations- easier said than done!
It sounds like you know you are not well enough to work. Could you go back part time?

 

[arewenearlythereyet]

Hi, I have also had CFS for a similar time as you and went back to work after 5 months off sick (back in 2014). Have you checked disability rights?not sure in Canada but in the UK CFS is covered by the discrimination act. This was useful for me in that it helped me negotiate a phased return and reasonable adaptations at work. ( regular rest breaks, later start in the morning Wednesday's working from home and a change of duties to allow me to avoid heavy lifting and standing for periods longer than 10 minutes). My phased return was around 4 months starting with an hour a day for 2 days a week and working up. Not sure if any of that is possible with your type of work but it's worth a look if you haven't already. You will need to be clear with your work about your limitations....I've found that bit a bit wearing since people assume you are ok. I've managed to build myself up to working full time, but can't really do anything else. Vitamin b12 supplements have really helped improve my cognitive stamina at work but I'm still useless with physical stuff. That and the heart rate monitor like you're already doing have been the best things. I feel for you on the work thing, just keep sticking to your limits that's the only thing you can do to keep from deteriorating, which is the most important thing.

 

[*GG*]

Seems like you would have more luck getting on Nimotop than LDN? Interested to see how that evolves

GG

 

[Dechi]

@hellytheelephant Thanks for the advice. I tried to go back part-time, but my employer refused, twice. After 18 months on disability, they fired me by saying my job was no longer required. After 18 years working for them and being a good employee, never sick except for this episode. So now I need to start in a brand new place where I will have to prove myself and work hard, while being sick. Not too appealing...

@arewenearlythereyet thanks for the encouragement. I will eventually find something that works, I suppose. I a, debating between starting part-time and not having enough money, sooner, or waiting as much as I can and starting full time and see what happens. I am a bit discouraged because I don't seem to be getting much better, on the contrary.

@*GG* Excuse-me I am not sure what you mean ? Nimotop is still working very well to keep crashes from happening. I am hoping LDN will help me with energy, lactic acid and other fun symptoms.

 

[caledonia]

My suggestion would be to look into disability carefully. I'm not familiar with Canadian guidelines. Consult with a couple of lawyers if necessary.

If you're unable to work full time on a consistent basis 8 hours a day, 5 days a week, 52 weeks a year, you should be eligible for disability now.

Is it possible to work part time while applying for disability?

Is it possible to work part time once you're approved for disability?

That might give you the best income, while still preserving your health.

It's typical for your disability income to be based on your working income. If you switch to part time work it will lower your disability payments should you apply for that in the future. Can you live on a lowered disability amount?

 

[Dechi]

@caledonia You have very good points ! I don't have the answers to your questions.

I am trying to obtain the name of a good lawyer right now and will be able to consult with him before making a decision, hopefully. The maximum amount for disability is not very high, going lower than that would be very hard. So I guess working full-time would not serve a great purpose !

 

[*GG*]

@*GG* Excuse-me I am not sure what you mean ? Nimotop is still working very well to keep crashes from happening. I am hoping LDN will help me with energy, lactic acid and other fun symptoms.[/QUOTE]

Oh, didn't recall you were already on it. So looking to add the LDN? Interesting!

GG