CFS is getting on my....

[yabeeb]

Hi. Not sure if i'm posting in the right place so apologies if not.

I am after some general advice/identification re symptoms. I'm 33 and had CFS since 2007 after i got a virus. I'd say i have it mild/moderate and have tried various treatments (Lightning Process, Kinesiology, Candida Diet, CBT). None of them made too much of a difference.

Problem is i still lead quite a busy/stressful life. I have tried to adapt my life to accommodate my CFS but still work 33hrs a week and sometimes do more to manage the workload. I also refuse to give up exercise because its one of the only things that brings me joy anymore. I swim once a week for 20-25 mins (twice if i'm lucky) which equates to about a kilometre or a bit more, and do a weekly pilates class. I find that PEM sets in 48hrs after swimming.

I find i am generally symptomatic around 75% of the time (exhaustion, achy, brain fog). Basically all my time outside work is spent trying to manage living (i live on my own) and feeling more symptomatic than usual. Its as though ALL my energy goes into work because it requires a lot of brain power and is quite a stressful role. I often wonder if i didn't work or worked less whether I would:
a) feel consistently less symptomatic (more stable with less crashes)
b) have a better chance of long term improvement/recovery

Does anyone have this kind of experience with work? I sometimes feel getting signed off sick for a couple of months to see what difference it makes. In reality it would be difficult to reduce my hours because it would not be financially viable but if i knew it would help my CFS recovery then i would find a way.

Also, I keep wondering whether i'm depressed. I feel grumpy a lot of the time but mainly when i'm symptomatic. I feel like my life has been ruined and that i cannot achieve my dreams/goals/ambitions. I have tried amitriptyline and nortriptyline but got some rank side effects that just didn't make taking them worth it. Plus they didn't seem to make any difference to my mood. How do i know if i'm just grumpy or actually depressed?

Hope that wasn't too negative....

Any feedback/advice/identification gratefully received!

Gail

 

[WillowJ]

hi Gail, welcome to the forum.

It's normal to feel loss/grief when dealing with a serious illness. I have to say I feel grumpy sometimes, too. And I do have mood changes that seem directly tied to symptom flares. I believe it's from cytokines (chemical messengers that direct the immune system).

Elinor Stein's "Guideline for Psychiatrists" which can be found here:
http://www.mecfswa.org.au/Professional_Resources/Guidelines_for_Psychiatrists

from Page 9:

4.1
Four Types of Affective Disorder Commonly Seen in ME/CFS
1.Reactive grief due to loss of health, social connections, family support, financial capability, career and uncertainty re: all of these

2. Biological change in mood/cognition as part of the disorder of ME/CFS (similar to mood change in MS or Parkinson’s disease and as reported in epidemic ME)

3. Comorbid depressive disorder

4. Mood change due to medication or food or withdrawal from either.


Consider a diagnosis of comorbid depression when:

 The depressive symptoms predated the physical disorder

 Pessimism is generalized beyond health and illness related issues

 The patient is stuck in depression and it is having a negative effect on treatment.


Teaching the patient careful self observation skills and using daily ratings of mood and other symptoms can help distinguish patients whose mood problems are biological and associated with ME/CFS and other types of mood changes.

Biological mood changes vary in parallel with physical symptoms, while other types of mood problems are more independent.

In my case, I found that I tried too long to hang onto work, school, exercise, and such and I believe this contributed to my present severity (in addition to having no supportive treatments for a long time).

There are some primers which explain some other types of treatments which are being used; I put links in a post here. There is also a page here, and @heapsreal might be able to provide a link to another document.

Treatments are a bit hit and miss at the moment, but some people have some amount of success with some treatments, and if you have any conditions with an established treatment protocol (like dysautonomia or migraine or IBS), that might offer direction for supportive care.

all the best

 

[Daffodil]

hi gail. i was also in that phase of the illness, where i was able to work and exercise, but had to sleep a lot afterwards. i spent several years in that phase, before i declined much further. the illness can be progressive, so i would strongly suggest you see a specialist now and treat it aggressively.

i don't want to scare you, but it can become REALLY bad. you need to take it very seriously now.

 

[Valentijn]

@yabeeb - I'd drop the swimming immediately. If it makes you sick, why keep doing it? Stopping it also might leave you with more energy for more essential tasks. Pilates is also quite capable of eating into your diminished energy reserves.

 

[tdog333]

What valentijn said.. your liver is working overtime, it doesn't need any extra chlorine to process

 

[SOC]

@yabeeb,
It appears you are vastly overdoing for your level of illness. Many of us here (as well as expert ME/CFS clinicians and researchers) can testify that overdoing, especially to the degree you are, will lead to increasingly severe illness. I doubt you want to get worse than you already are. Many of us have been there, done that, and now regret not cutting back before we became severely ill.

The treatments that you've tried are unlikely to make a difference in a medical condition like ME/CFS. I'm guessing, based on the treatments that you've tried, that you are in the UK where ME/CFS treatment is abysmal. If you are in the UK, I strongly suggest to go Brussels to see Dr Kenny DeMeirleir (a real medically-based ME/CFS doc) as soon as possible to get a decent diagnosis and a useful medically-based treatment plan.

There are a fair number of KDM's patients here you can talk to if you have questions. You could go to the ME/CFS Doctors section (under Doctors and Diagnostics) to read and ask questions.

 

[Valentijn]

@yabeeb - Another note. I think we all know how hard it is to give up doing things you love. But eventually, the decision is made for us, and if we keep doing them, we have to stop eventually anyhow because we can't do them anymore. It's just delaying the inevitable and suffering in the process - at some point we just have to let go and mourn.

But then we can find new activities which are far less demanding, but still enjoyable. I can't go for walks anymore, but I can ride around the neighborhood and huge park on my mobility scooter. I can't go to language classes or do volunteer work anymore for the low-income housing agency, but I can sit on my butt for a bit and do some low-intensity gardening. I can't read novels much anymore, but I can play silly free or cheap games.

I can't do most of the things I used to value, but I've found plenty of replacements. In fact, most days, I don't even get around to doing everything I'd like to do, even when PEM and cognitive dysfunction aren't a factor! Life isn't over, but it has changed a lot. I just have to find enjoyment in different places now.

 

[Snowdrop]

Hi Gail

Welcome to Phoenix Rising.
It might seem that the answers so far to your query are rather dire but I also am going to chime in with the same message.
When I was your age I was in the same position. Instead of working a job I stayed home with my children.
I had the routine of getting up in the morning for them and life was quite busy.

It's very hard to give up trying to get life back to what you want but if you have ME it's not going to happen that way.
Not that there isn't hope. Many things are starting to happen in research presently.

There is plenty here to help you familiarise with the various aspects of this illness and what your options are.

REST is the top priority for trying to stop further decline and then evaluate the treatment options that are viable for your situation.

 

[GracieJ]

Hi, @yabeeb and welcome to the forums.

Learn everything you can about your particular symptoms. This is a great place to do that. There are multiple system dysregulations going on, so how you handle things really needs to be customized to your needs.

At the same time, enough is known in general about ME that you do not need to suffer through months or years of trial and error.

There is a high chance your thyroid is involved. Get away from chlorine in pools ASAP. It makes things worse.

Pacing is great, but the truth is you need to downsize activity NOW to avoid a crash. Find your realistic activity baseline soon. It may mean some big changes but you can avoid a lot of suffering.

Many of us have made the "mistake" - an honest one, going decades without good help - of rationalizing and pushing ourselves only to find things getting worse in time. That has dire consequences. For me, it meant losing nearly everything. That included jobs, housing, relationships, confidence, etc.

Recognize that you have started a grief process. Make it a healthy and progressive grieving so you are not stuck in a stage of that while dealing with illness.

Glad you are here, sorry it has to be in this circumstance. You are in good company.

 

[PNR2008]

I asked my boss for 3-6 months off to rest and get better. That was 26 years ago.

 

[yabeeb]

I asked my boss for 3-6 months off to rest and get better. That was 26 years ago.

Did it work?!

 

[yabeeb]

Wow thanks so much for your replies guys. Its hard to hear but on some level i know it already. People without it just don't understand. I have always got through things - had a lot of trauma in my life etc so have needed to. I am beginning to see it won't work with this. In fact i think i am still in a bit of denial 7 years in! The minute i feel slightly better/less symptomatic I think there's nothing wrong and behave how i want to again. Its crazy! I will investigate my treatment options, make some changes and take it from there. Thanks again.

 

[yabeeb]

@yabeeb,
It appears you are vastly overdoing for your level of illness. Many of us here (as well as expert ME/CFS clinicians and researchers) can testify that overdoing, especially to the degree you are, will lead to increasingly severe illness. I doubt you want to get worse than you already are. Many of us have been there, done that, and now regret not cutting back before we became severely ill.

The treatments that you've tried are unlikely to make a difference in a medical condition like ME/CFS. I'm guessing, based on the treatments that you've tried, that you are in the UK where ME/CFS treatment is abysmal. If you are in the UK, I strongly suggest to go Brussels to see Dr Kenny DeMeirleir (a real medically-based ME/CFS doc) as soon as possible to get a decent diagnosis and a useful medically-based treatment plan.

There are a fair number of KDM's patients here you can talk to if you have questions. You could go to the ME/CFS Doctors section (under Doctors and Diagnostics) to read and ask questions.

Thanks for this SOC. Yes i am based in the UK and i think you're right - the treatment is pretty poor. I will have a look into KDM. I have spent a fair bit of money on treatment already so if i have to part with serious cash i want to be confident I will get at least some positive results.

 

[SOC]

Thanks for this SOC. Yes i am based in the UK and i think you're right - the treatment is pretty poor. I will have a look into KDM. I have spent a fair bit of money on treatment already so if i have to part with serious cash i want to be confident I will get at least some positive results.

There's no guarantee with any treatment in ME/CFS, but at least KDM is using medical treatments to treat testable conditions, unlike the LP and CBT that you've already spent money on. The odds are better you'll get improvement from treatment from KDM than from anything else you've tried so far. That's probably the best assurance you're going to get. Real medical treatment is a better use of your money than psychobabble nonsense.

 

[PNR2008]

@yabeeb, If you have to ask, stop working.

 

[taniaaust1]

Im with what the others have told you.. get yourself some decent treatment and do it now before its too late and you get worst. ILike many others here, I too regret I didnt do that and tried to keep on going. I tried till I ended up completely bedbound for 9mths, I crashed so bad I couldnt even get myself to a toilet.

KDM would probably be a good choice and a better thing to do then what you've tried already.

You should also think about giving up that swimming and change to doing exercise (for a shorter period per day..something in which doesnt cause you any post excertional payback) eg you could try 5-10 mins per day yoga instead of the 20-25mins swimming. Break things do into smaller amounts and work out your exact limits to stay under symptom payback.

I think you may need treatment for depression.. I say this due to your comment saying that exercise is the only thing which gives you joy anymore. That to me sounds like a depression issue if you cant also find joy in other places or create situations in your life to help give you more joy. Im in a wheelchair often with this illness but I still have things in my life which give me joy. If you need to loose something due to this illness, you need to find something else to replace it with eg I have a pond I can just sit outside and watch which gives me joy.

 

[daisybell]

Hi @yabeeb
Stopping work is such a hard thing to do. I've just done exactly that, and know that it was not a minute too soon (and was probably later than was good for me). But I had to feel that I was ready for it. Since I stopped 6 weeks ago, I've actually been worse, but I think that is delayed PEM, and I am hopeful that as I learn to pace myself better I might improve.
Good luck with whatever you decide.

 

[yabeeb]

Im with what the others have told you.. get yourself some decent treatment and do it now before its too late and you get worst. ILike many others here, I too regret I didnt do that and tried to keep on going. I tried till I ended up completely bedbound for 9mths, I crashed so bad I couldnt even get myself to a toilet.

KDM would probably be a good choice and a better thing to do then what you've tried already.

You should also think about giving up that swimming and change to doing exercise (for a shorter period per day..something in which doesnt cause you any post excertional payback) eg you could try 5-10 mins per day yoga instead of the 20-25mins swimming. Break things do into smaller amounts and work out your exact limits to stay under symptom payback.

I think you may need treatment for depression.. I say this due to your comment saying that exercise is the only thing which gives you joy anymore. That to me sounds like a depression issue if you cant also find joy in other places or create situations in your life to help give you more joy. Im in a wheelchair often with this illness but I still have things in my life which give me joy. If you need to loose something due to this illness, you need to find something else to replace it with eg I have a pond I can just sit outside and watch which gives me joy.

Thank you Taniaaust1. This is helpful. I need to review things. I have tried to email KDM but no response yet. Do you have any idea on the cost involved? Would it be more than 2-3k?

 

[yabeeb]

Hi @yabeeb
Stopping work is such a hard thing to do. I've just done exactly that, and know that it was not a minute too soon (and was probably later than was good for me). But I had to feel that I was ready for it. Since I stopped 6 weeks ago, I've actually been worse, but I think that is delayed PEM, and I am hopeful that as I learn to pace myself better I might improve.
Good luck with whatever you decide.

Hi Daisybell. Thanks for your reply. I hope things improve for you soon. Keep me posted!

 

[Valentijn]

Thank you Taniaaust1. This is helpful. I need to review things. I have tried to email KDM but no response yet. Do you have any idea on the cost involved? Would it be more than 2-3k?

Mine was about 3,500 euros I think. But you can make it clear that you have a budget that you need to stay within, and just get the testing you can afford.