Been ill for nearly 2 years Dr fobbing me off!

Hi Patrick

No I've not had the flu and I had the flu shot when I was pregnant 5 years ago. I did have a very bad urine infection 3 years ago which lasted around 6 weeks until it finally went after a strong dose of anti-biotics but that's the last time I had anything wrong with me. Well, until all of this started nearly 2 years ago completely out the blue!

Big news this week Stanford University has announced a major break in diagnosising ME And CFS,it may lead to a test to say people have ME and CFS

Thank you very much for this information it's very helpful and interesting. I'm going to print off some info that I've found and the it to the Dr on Tuesday as he'll most definitely try and fob me off with migrane again. Also, since Sunday I've been experiencing an awful burning sensation on my right shin that comes and goes and there's no explanation for it. I've woken up this morning again with an awful headache and feel as if I've not been to bed! This week has been a bad one

I know exactly how you feel, I woke up with a bad pressure headache today, and I have the burning sensation frequently,also the Sharpe pains you talk about, I do hold down a full time job,but I was so bad yesterday,my supervisor is going to give me an easier job today.There was a land mark medical paper published August 30 on ME CFS research by the university of California,they list biological marks that are inquiring to ME and CFS patient and also a long list of the viruses and bacterial infections that trigger ME and CFS and what things can be tasted for,the marks are different for men and women,it has been an amazing week for ME CFS research,they do lust influence as a trigger,the flu has triggered my condition for years,3 relapses caused by the flu for me in the last 15 years, I did have one triggered by the flu in 1979 that is the first I am pretty sure of but I did spend a week in the hospital when I was 17 in 1974

BtW my daughter was born in 1979 ,

Can I ask what you take for the headaches and if painkillers help?

I've been prescribed Naproxen which done nothing and any over the counter painkillers do nothing either! They had me on Propanolol (BetaBlocker) and they didn't help either but I wasn't keen on taking them.

I found a herbal pill called Feverfew in the health shop and they had great reviews but I've been taking one a night for 3 weeks and still made no difference.

I was hoping to get myself a part time job now my son's at school but can't go to work feeling like this everyday

Advil helps with my headaches but my biggest problem is my muscles nothing helps that, I struggle to walk 100 metres,walking quite often makes me nauseous and when I stop I start shaking.Today was a bad day for me,even thou they put me on light duty it didn't help,work was hell but I survived,just finished work

Hi Clair,  it's Sandy, the one who told you about her husband having severe CFS and Fibromyalgia for over 27 years, and has suffered horrible unbearabe pain.  He had to go on Morphine for his pain along with a muscle relaxant, but I'm not recommending that for you.  However, there are some things you should consider if you haven't already.  For instance, if your headaches seem to be mostly in the mornings, or originating in the mornnings, it could very well have somethig to do with the way you're sleeping.  It could have to do with your position, your pillow, your mattress, or all three.  It could have to do with your neck, which could just be the neck position, or even from back pain going into the neck, and then into your head.  You may need a more firm or less firm pillow, or more support underneath your neck.  Maybe try sleeping in a different position or something.  Perhaps you need a chiropracter to do a neck or back adjustment, or just a simple massage.  I'd give you a massage or neck rub if you lived close enough to me, but chances are, you're nowhere near me.  (I'm in Arizona).  When I have bad headaches, I can only get relief by using heat packs and wrapping them around my head.  The heat and the pressure helps me a lot.  But my husband hates heat for his head aches.  Some people can only get relief using ice packs, but not me.  I know it's not easy, but sometimes if you can reach up and gently massage your head, it can help relieve some of the headache pressure and pain.  Also, don't forget what I said before about the possibility of an anti anxiety medication - not anti-depressant, but anti-anxiety.  And also, the malic acid with magnesium (which relaxes the muscles and eases tension).  Taking the magnesium before bed can help you relax better and sleep better, and possibly wake up without those headaches.  You also might want to take your pain medicine before bed, instead of waiting until the headache shows up in the morning.  Hope you'll consider and try some of these things.  Oh yes, and you may also want to make sure you don't have any hormone imabalances, but I recommend starting out with the other suggestions first, and then moving on from there to maybe a stronger pain medication if needed.

Hi Claire how are you getting on now last time I read you were going to the drs to ask for ct scan I have my appointment through for my scan and I go for mine on 21 sept I'm still very fatigued and always end up going to bed early can't work and most days I'm confined indoors if I go out it's a very short walk approx ten mins an have to stop for a rest 

Hi, the Dr was an absolute waste of time! I honestly could have punched him right in the face! I asked if it was possible I has CFS and he said no as I didn't have the symptoms! Eh, yes I do!!! I had my Mirena coil removed in June as I thought it could be that and I went and couple of months with no contraception but made no difference. He put me on the mini pill which I started 3 weeks ago but I swear I felt a lot worse on it but he said it couldn't be that either and that I'd need to be on something or I'd end up being 36 and expecting twins! I asked about steraIisation and was told they wouldn't touch me yet the NHS website says it can be performed as long as you're over 30 and you're family is complete!! I stopped taking the pill on Tuesday and yes I do feel a little better and I've started taking 5-htp at night before bed too but I'm still waking up with a dreadful headache each morning. I don't know if it's maybe hormonal or CFS or what the bloody hell is wrong with me but I do know I'm just not right! I've got another appointment with a lady Dr on Wednesday so will see how I get on with her, hopefully better than I did last week! Hope you're doing OK and thanks for asking how I got on x

Totally does your head in dosent it. I'm sure you feel just so desperate for drs to actually listen to what you are trying to explain hope the dr on Wednesday is more helpful x

I'm just sick of feeling rotten all the time! I spent most of last week in bed. After I'd walked the mile to and from dropping my son at school I was home, pyjamas on and back in bed until 2pm!

That Dr last week was just awful. Sat and said he didn't know what to do with me! A few tests and further investigation would be a start! If I don't get anywhere on Wednesday I think I'll move to a different surgery.

Hope all goes well with your scan. Look forward to hearing how you get on x

I can imagine how that must feel I can't manage to go out very much simply cos of fatigue aching neck pressure on top of head nausea I go out three times week for walk consisting of walk to town 15 mins away and back having stopped on average 6 times so breathless an feel wobbly so I'm back on sofa for rest of day luckily I'm much older than you so don't have young children to look after I find that so hard the worst part is the dizziness which leads to nausea my dr refuses to do more tests apart from like I say asking for urgent ct scan I've never felt so ill x

Yes I will keep you informed. And hope you will let me know how you are getting on along the way. It does help a bit hearing from other people that are going through similar issues I wish us all on here a good recovery xx

Hi Claire

So sorry you had a bad time at the dr's . I know exactly the feeling of wanting to punch them in the face . Been there with dr's I could cheerfully slap. They make you feel so awful and worthless some of them. j hope you get on better with the lady dr.

You know you don't feel right and just need some answers . It was not very clever of him to say you don't have CFS as you don't have the symptoms . You certainly do have some. Not everyone has all the symptoms. And symptoms different in severity between individuals. Of course it could be something else , but sounds like he hasn't ruled much else out yet. I can really understand your frustration .

Goood luck on Wednesday.let us know how ow you get on. Take care x

I feel very strange today. Didn't have a good night with my son as he has a cold and had me up few times during the night. My head feels strange and my face aches and I just can't find any motivation to do anything. Think it'll be a day on the sofa for us.

Wednesday can't come quick enough just hope this Dr is a it more understanding and thorough as the one I've been seeing for over a year just sits there and looks at me as if I'm daft! Will be sure to let you know how I get on.

Take care x

 Know the feeling I've given up on my particular dr after I have my ct scan which is next week an when got results depending on the outcome of course I'm thinking I could try another dr at same practise as if feel with all the symptoms I'm having I should be having more tests I have underactive thyroid not had any tests to see if it's that I'm having breathlessness although not palpitations I was suprised wasn't given ECG fatigue pressure on head heavy legs neck pain shoulder pain ear pain that comes and goes all I was given was ear examination chest examined and blood pressure 

The dizzy ness I feeling is more of a wooziness like trying to balance on a wave. Foggy head can't concentrate for long eyes blur sometimes I'm going to book eye test ASAP as I feel maybe something can be seen there. 

I sometimes have blurred vision too and find it difficult to read small print. This isn't all of the time though it comes and goes. I've been for 3 eye tests and my eyes were fine. It's so hard when you know it's not right but no one can find anything wrong with you!

Three years ago vision express found a naevus in the back of my eye apparently said it could have been there for several years yet I had been to a few opticians over the years an none if others had picked it up they sent letter to my dr an I had to go to hospital to be monitored annually I'm discharged now 

Just realised I'd put the name of the opticians that had picked it up it's been taken out by moderators forgot I shouldn't have done that 

I get blurred vision at times too claire. I know other with ME who get it t

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