chronic fatigue syndrome

[harasgenster]

I don't normally suffer from health anxiety but something's been bothering me recently. My mam is diagnosed with fibromyalgia and my friend has CFS. They both have limited lives and can't function in the 'normal' way for their age. My mental health is so much improved I now consider myself to be recovered (but with some adjusting to do because I was ill from an early age), but my hypersomnia (15 hrs of sleep a day to feel comfortable) and my experience with debilitating exhaustion (where i am unable to walk far without rest - and by 'far' I mean 'down the road') keeps making me a bit worried. I don't have that kind of exhaustion at the moment but I have experienced several times over the last 5 years, normally for periods of 3-6 months. I've had to leave my masters degree and been sacked from jobs for this very problem. In fact, I'd say it is the one symptom that totally turned my life upside down. I was able to manage before then. I keep trying to find articles saying anxiety and depression causes this kind of thing but can't. Every page only say CFS!

I think the reason for my nervousness is twofold: 1) my mam keeps saying things about it running in the family and that I have similar symptoms to her early ones and 2) it would completely kill me if it was something like CFS that they don't know how to treat. I've worked so hard and I just want to get my life back now. I guess it's no wonder I'm working myself up because this is so important to me!

I guess I'm just looking for some sane voices to tell me that it's not worth worrying about and to just trust that my energy and sleeping patterns will return!

Thanks!

[Andria24]

I'm going with "you seem pretty in tune with your body - why not listen to your instincts?".

You appear to be clear about where you're at and how far you come. You're about where you intended to be ... then this. But what is this? Is it really as significant as it feels? Is it not something you've experienced before?

To me you sound like you're still on track

[kirstyg]

I think you are doing great!!
My very young daughter has cfs and fibromyalgia. Shes only 13 and yes its life altering. We have done alot of research and can honestly tell you that neither run in families. I run an online support group for kids suffering these horrible illnesses and we have advice from many professionals.
Its not something you can catch or that can be handed down so dont worry.
I have days and weeks of feeling very fatigued and achy but I know its either my anxiety or exhaustion. Its exhausting to worry all the time about yourself or others so dont punish yourself .... you are doing brilliantly.
I learned that its ok to feel like that sometimes. I cant be super strong all the time and it takes its toll but you'll pick up again.
Good luck xx

[harasgenster]

Thank you both for your messages. I suppose it's to be expected for me to start worrying a bit about these kind of things. I've wanted to get my life back for so long that now it's just there over the horizon I suppose I'm panicking that something will take it away.

I think this particularly bad night was sparked by hearing from my friend with CFS - who has also had a really bad childhood and life because of the circumstances in which she grew up and the resulting mental health problems. She's ill again with two separate types of anaemia and she's passing blood, so they think there's something wrong with her stomach. She was being really calm about it all but I couldn't help feeling really angry on her behalf. It just seemed so unfair. She's already been through enough and it just seems like things keep happening to her.

I've learned to reflect on my feelings and I felt that my anger on her behalf was probably because I'm actually very angry about what my psychological problems have taken away from my life. I haven't had a chance yet to be young and healthy, and I've noticed I'm acutely aware that being in my late twenties means I only have a few years left to be 'young and healthy' before I settle down and have a family etc. Not that that won't be good, it's just I really want to be 'young' first, if you know what I mean. I feel like my friend hasn't totally had that chance and I'm angry about that. And I think I'm angry that my life hasn't been fun yet, and that anger is turning into worry that maybe they'll find something wrong that means I can never be 'young and healthy' and I'll never have the life I want. Considering the history to this moment - and the anticipation for so many years trying to get well - it does seem kind of natural to me that I'm thinking this way. In a way it would be weirder if I wasn't feeling uncertain and if I wasn't worrying that my hopes will be dashed!

Sorry for the long reply, but I've been thinking about it.

Also, I'm so sorry to hear about your daughter. That's such a young age to feel so ill. I hope that things improve for her.

[catherineinky]

I have a friend who is a doctor. CFS is a label some are stuck with because the doctor can not figure out what is wrong with the person. They have to get insurance to pay for the test and so they apply CFS to the diagnosis. True... So if your friend has been stuck with this label I would think she needs further investigating. She might just be suffering from something entirely different.

---------- Post added at 16:54 ---------- Previous post was at 16:50 ----------

I think you are doing great!!
My very young daughter has cfs and fibromyalgia. Shes only 13 and yes its life altering. We have done alot of research and can honestly tell you that neither run in families. I run an online support group for kids suffering these horrible illnesses and we have advice from many professionals.
Its not something you can catch or that can be handed down so dont worry.
I have days and weeks of feeling very fatigued and achy but I know its either my anxiety or exhaustion. Its exhausting to worry all the time about yourself or others so dont punish yourself .... you are doing brilliantly.
I learned that its ok to feel like that sometimes. I cant be super strong all the time and it takes its toll but you'll pick up again.
Good luck xx

I am sorry to hear your daughter is ill. My daughter, when she was 19 got extremely ill.. doctor after doctor with no answer. She was diagnosised with IBS, CFS, FIBRo... you name it... she was medicated with antidepressants and such. I brought her home with me and took her off the meds... now my daughter is 25, married and is healthy... she has not been sick sence.. I had a good friend who is a doctor and he told me... A good daughter will killl you....

[harasgenster]

I have a friend who is a doctor. CFS is a label some are stuck with because the doctor can not figure out what is wrong with the person. They have to get insurance to pay for the test and so they apply CFS to the diagnosis. True... So if your friend has been stuck with this label I would think she needs further investigating. She might just be suffering from something entirely different.

It's a little different in the UK because we do not have insurance policies for health (unless we want them and then we pay for private rather than public treatment). Indeed, CFS is a diagnosis of exclusion. In my friend's case it seems likely it is actually something else because her bloods are consistently abnormal but fortunately her doctors are brilliant and are looking at every possibility. With my mam, the symptoms started during menopause and she believes her symptoms are probably slightly caused by those hormonal changes and largely caused by an extremely stressful life. But everybody has their own opinions.

Because CFS/ME/Fibro are symptom complexes, there is no 'one' answer about what causes them (i.e. it is unlikely that everybody with CFS has the same disorder). The only obvious fact at the moment are that these people feel very ill. It is possible that some are suffering from auto-immune diseases, others are psychologically unwell, others have some kind of inflammation in the body, others are suffering from post-viral symptoms following a virus like glandular fever (and that can last for years, unfortunately)....there's all kind of problems that can lead to the same symptom complex. I agree that CFS patients are sometimes just shelved and put on the same medications and treatments, which to me seems a little shortsighted seeing as there is no evidence that they are suffering from the same disorder. It seems to me they should be treated as individuals and the grouping mechanism of having a word such as CFS may be more harmful than helpful, because it suggests they are the same. But I suppose without further research it is very difficult to treat a symptom complex. Unfortunately (and here's where I get controversial) pressure groups such as ME Action often (OFTEN) get in the way of good research because they will only accept research results that fulfil their own hypotheses. That's not how science works. And now many investigators are worried about looking at the syndrome because some have previously received death threats etc from ME campaigners. These people do more harm than anything else in the field and they do an absolute disservice to those who are ill. I guess I'm angry because people I love are ill and I want good research to continue, but GRRRRR!!!

[catherineinky]

You make an excellent point. Here in America the insurance companies dictate the health care system.
I feel I have cortisone induced anxiety. My anxiety started after a cortisone shot.
My left side of face feels odd, my neck muscles stiffen(they do not hurt) off and on. My mouth feels hot, like vicks vapor rub.
Test after test after test.
I think all I need is Klonipin but I cannot get a doctor to subscribe it. All the part of so many people misusing medication here in Ky.
Prescription medication abuse is on the rise in Ky and that is a shame. The people who really need it can't get it.