Don't lump CFS and ME together

I couldn't agree with you more. To my knowledge, I haven't even been given a formal diagnosis of cfs, nor have I been assessed for ME. Yet I just received a follow-up letter from my doctor telling me to exercise with increasing frequency and intensity. I already walk when I have the energy. My doc. didn't even seem to know about ME and since overexertion can exacerbate ME, it troubles me that she would make such a recommendation without confirming either diagnosis! And yes, I too feel like I'm being treated like just a lazy, ignorant person who doesn't know the benefits of exercise. If only the doctors and researchers could experience the extreme fatigue and malaise that we experience every day, for just an hour, or even a minute, maybe we wouldn't be so summarily dismissed.

When I was first diagnosed with CFS years ago, my specialist had me working out on a treadmill! Looking back, I can't believe this.

Hi Serenity

This is really shocking to hear!

I would seriously think about changing your doctor and find one who is far more understanding.  I have been verbally abused by to male GP's when

it was suggested early on by a mental health professional who had a lot of experience with cfids, cfs, me patients(I asked to see a psychaitrist cos I thought I was going crazy!!).  Her diagnosis was based on a long and detailed history taken from me over two separate sessions.  as that is 

how they come to the diagnosis through history of your symptoms.

So the history that I put together which was some 6 pages long I took to a new doctor.  I went to reception and asked who was the best most understanding doctor in the practice and made an appointment with her!!

That process took 4years...to cut a very long story short!!

I did still seek private treatment  aswell because the NHS put strict constraints on what GP's can do to treat CFS/ME.

 

I am not sure whether the doctor had suggested to you that M.E. is a mental illness. It isn't it is a physical illness. Of course when you have M.E. you can get depressed as it is such a horrible illness.

Hi Alison

Thank you for your reply

I am sorry for the confusing post earlier, brain gets in a tangle when trying to put things in writing!!

I was initially misdiagnosed with Chronic Anxiety Disorder bcause my adrenaline was running all the time, so I asked to be referred to a psychiatrist because I wanted to find out how to cure myself this problem!

When I saw a member of our local Mental Health Team and she took a very detailed medical history from me,

she told me that I was almost certainly suffering from CFIDS or ME but

it would be very difficult for me to get my GP to accept  this, and she was

absolutely right, infact I walked out of his office during his outburst and never went back to a GP surgery for over 2years!!

Eventually I did find a GP who agreed that I did have ME as she spoke with mental health professional and got all my history from her. She has been really very good with me and she said it is a neurological/physical condition and it is not in the mind and that I am avery brave person!!

As you say Alison it is difficult fighting off depression with chronic illness but my depression seemed to come over me because of other peoples' perceptions, behaviours, family and friends lack of understanding and intolerance.

So I have had to accept this situation and just look after me because I was damned if I did and damned I didn't!! 

And I feel so much better not having to deal with the emotional turmoil caused by trying to explain myself to everyone!

Thanks again Alison for your reply and hope you are having a good day?!

 

I find that very difficult as well trying to explain to people what it is like to have M.E. they always seem to have that look on there face as if you are making it up. I know what you mean as well about trying to write things down.

I have been really ill today because I made such an effort yesterday going out with a friend for the day to a quilt festival. It was such a long day but I survived.

Alison

It is pretty unbelievable. With so much contradictory information out there, it's really hard to know what is the right thing to do. After a follow-up conversation with my Dr, I've just decided to do what I am able to do. What's frustrating is that before I started experiencing these horrible symptoms, I was a very active person- I hiked, swam, skied, even ran. Now my body just won't cooperate. I would love to be able to do the things I used to do.

Seekingserenity: I know how frustrating it can be not to be able to be active, like before. I, too, was a very active person, like everyone else on this forum. I used to ski, work out at the gym, travel, my husband and I wrote a few books together, and worked with an architect to design and build our home. I've had to accept a new normal. Now I pursue quieter interests, like reading, listening to music, keeping up with politics, watching movies, and eating ethnic foods. Oh, and also posting on and reading this forum. I find it helpful to focus on what I can do, rather than what I can't do. Also, horrible as this illness is, it has allowed me to do stuff that I love (see above) that I would have had little time for before. I'm not trying to be a Pollyanna here. I'm just trying to use a little CBT to cope. This is sometimes very difficult, but I do my best.

Hi Alison

I have just seen this post after replying to you above!

I am sorry to hear that you are having a difficult time at the moment

and the fact that you have had this condition for so many years, you

are so very brave, and that is how you need to think of yourself!!

And as for people attitudes I want to say "st***" them but I will be

nice as usual and say that it is their guilt and laziness that stops 

them from understanding!

Take care Alison and rest easy!

 

Thanks for that. It does help.

Alison

I hope you will find some relief soon. So many years of not feeling good...my hat is off to you. It sounds like you try to make the most of it and try to include some normal/fun stuff in you life. Not easy to do when you pay for it afterwards. It really is all about choices and our choice to try to be normal when we can. Hopefully you will not pay for it too dearly going out with your friend. I am sure that it helped you mentally at least. We need that too. I wish you better health going forward. 

David: Check out my earlier post at the top of this thread. PVF is just another name for CFS/ME, according to many. There seems to be confusion in the professional community about this. But, frankly, I have no confusion about this. I was diagnosed with PVF years ago, and later, that diagnosis morphed into CFS/ME. But after all my research and many years of reading posts on various forums, I'm convinced they're the same thing, and that these so-called professionals are poorly informed. I reached my conclusion when reading the symptoms people describe that they have for CFS, ME,PVF, etc. The symptoms are exactly the same, again and again. Of course, not everyone has the exact same symptoms, but it's the same theme and variations over and over.