When do you know you are ready to go back to work (full-time)?

[lancelot]

Hello,

My doctor is Doctor Jean Cabane. He is a CFS specialist in Paris, France (I'm from France but right now I live in the USA).
He works at the Hpital St Antoine – 75012 Paris.
He did not tell me about the supplements (I dont think he belives in it). But he wanted me to do the exercise therapy.
I dunno where you live but a public visit to him is cheap (I dunno how it works for foreigner but as a French it was free but you have a 2month wait a least and he does not spend a lot of time with you if you take an appointment).
Private visits are around 100euros. It's better than public honestly.
Let me know if you need more info

Does your doctor and the french think CFS/ME is a mental disease like the UK or a physical(possibly infectious) disease like the US and canada? 100euros is cheap but i won't be traveling to paris for GET.

How long were you disabled and suffering from CFS/ME before you got well? Do you think maybe everything you did was just coincidental and that you're one of the lucky ones who experience remission from CFS/ME? It's been said by many CFS specialists that those experiencing remission have a higher chance if they are younger and within the first 2 years of this horrible disease.

 

[Jeffy14]

Does your doctor and the french think CFS/ME is a mental disease like the UK or a physical(possibly infectious) disease like the US and canada? 100euros is cheap but i won't be traveling to paris for GET.

How long were you disabled and suffering from CFS/ME before you got well? Do you think maybe everything you did was just coincidental and that you're one of the lucky ones who experience remission from CFS/ME? It's been said by many CFS specialists that those experiencing remission have a higher chance if they are younger and within the first 2 years of this horrible disease.

Hello,

My doctor is the french one and he thinks CFS is due to something wrong in the brain. I dont know what you mean by mental? Like depression? In this case, it's a NO.
He believes something is messed up in the brain ( nervous system, chemicals, whatever but it's not psychological). I did not talk much about this with him. He does not believe it's infectious.
I have had CFS for 3 years. I'm not one of the lucky ones and what I did was not coincidental because I was able to reproduce the same phenomenon twice.
Moving and trying to be active (but within my limits and always stopping before being tired) as much as I can helped me the most. I just want to say that I'm not cured at all. I feel good but I know that if I push too much I'm gonna crash. It's not like a miracle. I built up my strength slowly over many months but I know it's there. I'm certainly not the worst case of CFS.

 

[lancelot]

The people I know who have returned to work successfully havedone it very part-time at first. Half day, half days, full day plus half day etc etc. After 6 months one was sure that she could return to work full time as a nurse/in a medical capacity.

I understand that our energy budget comes in several sections physical, emotional, social, cognitive. We will not improve on all these levels at once. If your job can be stressful you might want to consider which of your energy budgets/areas is likely to be stressed, and how strong you honestly reckon that area is. You know what was the problem when you returned to work too early before. If you feel you can manage that then and have an understanding employer then have a go.

I feel that my body tells me when I can take on another task or area of activity. I listen, and take it very steadily and seem to be slowly improving. I wish you the best of luck in successfully returning to work. Let us know how you get on.

Suella,

i'm glad to have seen you here at this thread. i've posted something to you in another thread but it was probably buried after some time and you never saw it. i was wondering if you can answer my question from your post:

Originally Posted by Suella View Post
"I am in the minority here. I found my 6 sessions of CBT to be very helpful.



The NHS ME clinic and the CBT helped me to stop doing harmful behaviours and having thoughts which countered my body's attempts to feel better. They gave me the tools to know what works for me and what doesn't and the times of day that I am better than othersdoing certain activities, thus helping me to preserve my hard earned energy."


Can you be more specific and tell us what harmful behaviors and thoughts kept you sick?

 

[AliceZ]

Hello,

Yes I think a part time job is the best solution. For a couple of month see how it goes.
Im just wondering if you should not start ower in your exercises? 5min instead of 15.

Other than that I'm not the worst case of CFS and I'm still young (27) so those may be factors that helped me improve my health.
THanks again! I'll keep you updated.

Jeffy-
I think the part-time idea may be the best for your long-term health. It's too bad that in doing so, you can't get the pick of the best jobs, but being able to keep a part-time job beats having to quit another full-time job later on. Like you said, you're still young. You still have the chance to avoid the slow-but-steady descent over a 20-year period that has left me all but homebound.

I think something I tell my kids may well apply to your situation. My 2 kids are 18 with slow-onset CFS, and 20 with some of my pre-CFS characteristics. You, like them, have the warning with early CFS, the knowledge of CFS at a young age, and the opportunity to act now to prevent ending up fully disabled in your mid-forties as I am. With that warning, knowledge and opportunity, do you want to be like me when you're my age or better off than me?

When I was my kids' age, I was much, much healthier than my 18-year old daughter, and didn't have the odd pre-CFS issues (severe insomnia and immune system issues) that my 20-year son old has. When I was your age, I had a new master's degree after pushing it hard through grad school, 2 young kids and was the sole breadwinner for our young family. There's no question I overdid it. I'm the perfect role model for where you DON'T want to be in 20 years.

As for my starting walking again at 5 minutes, right now I'm doing okay at 23 minutes at my very slow rate of progress. If I crash again I may have to start at 5 minutes the next time. Sometimes I read how much worse off other folks are than I am, and I see where even 5 minutes of physical activity is beyond their current capacity, and I thank my lucky stars that I'm not bed-bound.

I'll be eager to read your updates as you work your way through your dilemma.
-Alice

 

[Jeffy14]

Jeffy-
I think the part-time idea may be the best for your long-term health. It's too bad that in doing so, you can't get the pick of the best jobs, but being able to keep a part-time job beats having to quit another full-time job later on. Like you said, you're still young. You still have the chance to avoid the slow-but-steady descent over a 20-year period that has left me all but homebound.

I think something I tell my kids may well apply to your situation. My 2 kids are 18 with slow-onset CFS, and 20 with some of my pre-CFS characteristics. You, like them, have the warning with early CFS, the knowledge of CFS at a young age, and the opportunity to act now to prevent ending up fully disabled in your mid-forties as I am. With that warning, knowledge and opportunity, do you want to be like me when you're my age or better off than me?

When I was my kids' age, I was much, much healthier than my 18-year old daughter, and didn't have the odd pre-CFS issues (severe insomnia and immune system issues) that my 20-year son old has. When I was your age, I had a new master's degree after pushing it hard through grad school, 2 young kids and was the sole breadwinner for our young family. There's no question I overdid it. I'm the perfect role model for where you DON'T want to be in 20 years.

As for my starting walking again at 5 minutes, right now I'm doing okay at 23 minutes at my very slow rate of progress. If I crash again I may have to start at 5 minutes the next time. Sometimes I read how much worse off other folks are than I am, and I see where even 5 minutes of physical activity is beyond their current capacity, and I thank my lucky stars that I'm not bed-bound.

I'll be eager to read your updates as you work your way through your dilemma.
-Alice

Sorry to hear about your situation. You are right in what you said.
Just a question: Is CFS hereditary?

 

[lancelot]

CFS/ME can run in families so there can be a hereditary component to it. Dozens of epidemic/infectious CFS/ME outbreaks have also been recorded so that may negate hereditary(as opposed to an infectious outbreak within families). But for the most part, PWC are in isolated/endemic cases without a hereditary or infectious component.

Jeffy, if your french doctor believes that CFS is caused by a chemical problem with the brain than he believes CFS is a mental disease. Here in America, it is widely believed that CFS or CFIDS is an immune problem. Did your doctor prescribe any drugs for you or was it strickly GET? did you ever get a chance to see Kenny De Melier or read about his work when you were in europe?

 

[Jeffy14]

CFS/ME can run in families so there can be a hereditary component to it. Dozens of epidemic/infectious CFS/ME outbreaks have also been recorded so that may negate hereditary(as opposed to an infectious outbreak within families). But for the most part, PWC are in isolated/endemic cases without a hereditary or infectious component.

Jeffy, if your french doctor believes that CFS is caused by a chemical problem with the brain than he believes CFS is a mental disease. Here in America, it is widely believed that CFS or CFIDS is an immune problem. Did your doctor prescribe any drugs for you or was it strickly GET? did you ever get a chance to see Kenny De Melier or read about his work when you were in europe?

Hello,

Ok Lancelot. I'm just not to sure with the "mental" word because it sound like it's psychological. Just to clarify he does not think it's psychological. And he does not even says that it's chemical. He clearly told me nobody knows and he does not know but, from the study he made, he assumes it comes from the brain. If by mental you dont mean psychological then thats fine with me but it's confusing. I just dont want people to think it's psychological and that we need a "shrink" because that's not what he means

He gave me an anxiolytic (Lysanxia- the molecule is called Prazepam) and also asked me question to know whether I would need anti depressant. He proposed to give me some but I refused. The purpose was to improve my sleep and reduce stress.
I dont know who Kenny De Melier is. I'll look him up. what did he do?

PS: I think Suella forgot to answer you once more

 

[lancelot]

I dont know who Kenny De Melier is. I'll look him up. what did he do?

KDM is the best european ME/CFS doctor and arguably among the best in the world. He has done magnificient original research that has explained many of the problems and symptoms that PWC suffer from. He is always looking for the cause and the best current treatments possible for us. If i were to travel to europe again, it would be to see KDM.

You may want to read "Defeat chronic fatigue syndrome" by martha kilcoyne as she like you is a patient who got well(remission) from CFS twice. i think there is an article on her here as well. She can relate and help you to keep your remission. take care.

 

[AliceZ]

Sorry to hear about your situation. You are right in what you said.
Just a question: Is CFS hereditary?

I feel pretty lucky, actually. I had the opportunity to prevent the full-out disorder (but blew it) and now my kids have the same opportunity. Both my daughter and I are on a treatment plan that has a good chance of giving us much-improved functioning. I think I've learned my lesson well enough that if it's successful I won't blow it again.

In our family, both my daughter test positive for EBV, CMV and HHV6 and I suspect my son would too if he got the tests. I suppose either the genetic tendency is inherited in our family or I just passed the viruses to the kids in utero or when they were young, or we all got it separately, who knows.

 

[AliceZ]

KDM is the best european ME/CFS doctor and arguably among the best in the world. He has done magnificient original research that has explained many of the problems and symptoms that PWC suffer from. He is always looking for the cause and the best current treatments possible for us. If i were to travel to europe again, it would be to see KDM.

You may want to read "Defeat chronic fatigue syndrome" by martha kilcoyne as she like you is a patient who got well(remission) from CFS twice. i think there is an article on her here as well. She can relate and help you to keep your remission. take care.

Thanks for the suggestion about Martha Kilcoyne. I'm going to check that out.