Possible CFS/ME

Hiya

Sorry but it's very quiet on this site now but I still look in occasionally.

It certainly sounds like you have ME/CFS and it is great that your GP has referred you to a specialist because many GPs don't.

I am not in the Oxford area so I can't comment on that specific specialist but I can tell you usually the appointments are based on a question & answer basis.

My appt took over 2 hours and during that time I had to give a pretty full medical & personal history so it is wise to go prepared because it is easy to forget things at the time. You might want to make notes (or even keep a diary) of your symptoms and how you have been feeling because it will help a lot, especially if you suffer from the common \"brain fog\" that afflicts a lot of us.

I will continue to check in here so if I can help at all just ask :lol:

Kristal

I was also diagnosed with depression and have just spent 7 weeks on a psychiatric ward as the medication that I was given did nothing for my fatigue,or other symptoms, and only served to make me feel suicidal!

I ended up (out of choice) having ect,which improved my appetite and helped slightly but as soon as it was stopped,the physical symptoms returned with a vengeance!

I get very low as I m a single Mum with two children,one of whom has not lived with me since June as I have been so ill! (She stays with her father)

Some days I am barely able to get out of bed and having a bath or shower is a major exercise which I can only manage occasionally.

I haven't yet been referred to anyone as my gp doesn't really believe in ME/CFS.I am going to go through Dr. ***** to get tested and take it from there.

I wish you luck with your referral.There are so many people suffering like us and being wrongly diagnosed.No wonder we get down!!!

All the best any way.xxx

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Hi JKW

I urge you to change your doctor.

You have been through such an ordeal already that you deserve a GP who actually believes in ME/CFS.

I battled with my doctor for nearly 3 years with him insisting that I was depressed and dishing out anti depressants and in the end he told me outright that he didn't believe in ME. It was a really big thing for me to find another doctor because I was brought up to believe that \"the experts know best\" so I was very reluctant but I am so glad that I plucked up courage in the end.

On my very first appt with my new GP she totally agreed that my suspicions of having ME were correct and started the referral process immediately, it was such a huge relief.

It is such a common problem that ME sufferers are misdiagnosed with depression, sometimes for years.

Good Luck to you

Kristal

:ok:

Thank you Kristal,

I believe that I have been misdiagnosed all my life.I am normally a very active person with a great part-time job which I love,a lovely house,two fantastic children but I have periods when I get physically very low.

The only time I have ever felt wothless,guilty or suicidal is when on anti depressants.

We are now pushing for a referral whether the GP's at the surgery believe in it as a diagnosis or not.They can't refuse to do that surely?

I do hope that things get better for all sufferers in this country as we deserve a chance to be treated and not fobbed off!!!

If it wasn't for the internet,doing research and support from my friends and family,things would be unbearable!

I wish you luck too and hope that we can and do begin to feel better.

Jane.

Hi Jane

I'm so glad to hear you have support from family & friends, it is such a huge help.

As for your doctor making a referral, well I think you might have a battle on your hands if they don't believe in ME as an illness because they can just refuse which is why I suggested changing doctors.

Do you have a local ME support group in your area? Usually they don't mind at all people who have yet to be officially diagnosed contacting them for advice and they could probably recommend a more sympathetic doctor in your area.

I understand what you mean about feeling worse on anti depressants, I had some severe adverse reactions which only led me to think I was going mad :? which isn't helpful is it?

Like I said, it is very quiet on this forum now but if you feel the need to question or just rant about anything then I am happy to help.

Take Care

Kristal

Hi Kristal,

Thank you for your message.

I haven't given up hope as my GP seems to be more accepting of the physical symptoms that I am experiencing now.

Sadly because the anti-depressants made me feel suicidal and I went into hospital (voluntarily) I feel that having the anaesthetics for ect has merely exacerbated the physical symptoms.

I haven't given up hope of being taken seriously as I know that I am not mentally ill just low because of my lifestyle being drastically curtailed!

I changed the sheets on my bed this morning which took me 45 minutes but I was proud of myself!

I will look into a local support group but at the moment I am either house or bed bound so I find the internet of more use.

Thanks again and I wish you all the very best.

Jane.xxx

Hi Jane

You sound as if you really are at a low ebb at the moment & your energy levels are totally depleted.

I hope you are managing to get plenty of rest although I understand what you mean about feeling good after managing to change your bedding, sometimes even though you feel totally exhausted it is worth it to regain some sort of sense of achievement even for a short while.

Glad to hear that your doctor is more amenable now although I must warn you to be patient & prepared for things to move slowly because unfortunately ME resources are minimal.

It had to wait 5 months for my specialist appointment & then another 4 months to eventually get the report from him & the official diagnosis but it was worth the wait..... at least now I know for sure.

Take Care

Kristal

Thank you Kristal,

He did make the referral but it was to a rheumatolgist so we are still battling!

My Mum is prepared for me to go privately at least for the initial consultation which costs £250 but it is a small price to pay to be given a correct diagnosis.

I still can't do that without a referral and it won't be until January any way.

In the meantime the psychiatrist wants me to take sodium valproate or depakote which given my experience recently,I am naturally very reluctant to do!

In the meantime if they said \"stick your head in the oven\" I probably would do because I feel so frustrated!!!

I have joined another ME/CFS forum and find that very helpful as it's nice to connect with other people in the same circumstances and there are loads of us,which in some way is reassuring,but also quite distressing that so many are suffering.

We have to keep our chin up and be there for each other as there is no miracle cure I guess.

Thanks for your messages.

Janey.xxx

Hi Janey

I'm sorry you are still battling with your GP, I rather suspected that might be the case which is why I suggested finding another more sympathic one because they rarely change their minds where ME is concerned.

Anyway I am glad that you have found another group who you feel more comfortable with and I hope you get the support you need.

Good Luck to you

Kristal

Hi Kristal,

Thank you for your reply to my last message.

It wasn't that I needed a more 'comfortable group' just that the other one is very active and has nearly 1,000 members!

I finally got my diagnosis after a cancellation last Monday.I had to travel all the way to Essex and that took its toll on me but was worth it.I am now on a very low dose of Amitryptiline and NADH supplements waiting for Vitamin B12 injections in January.

Thank you again for all your words of encouragement and support.xxx