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My GP doesnt seem to have a clue about ME. I have just had a letter from him. He is sending me to see a rheumatologist. I have joint pains but I dont think this is the right person to see. He said he cant find a ME/CFS specialist locally. I live on the Isle Of Wight. He said the closest is Poole! Does anybody know of anybody. He has asked for me to go for more blood tests. He even mentioned checking for HIV. I dont think this seems right. I have had lots of blood tests.

I dont know what to do next. I seem to have all the symptoms of ME. The GP even said that ME could be possible but he cant diagnose that.

This is all very frustrating. I dont know what to do next.

David

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  • Welcome to the world of ill health - there are only a couple of points you need to understand but my time is limited so I will tell you the most important one - forget about what you know about Drs.

    They know very little and what they do know about is the easily treatable - chest infections, verruca and the like. They know what bracket your ailment comes under and then refer you on as they do not hold the knowledge.

    I can tell you without a doubt that as having suffered CFS only recently there is not one GP in my practice that understands it like I do including treatment options, the same goes for CFS/ME.

    There are loads on here that will know much much more than your GP so don't despair you will get the info needed, unfortunately you then have to make your GP listen/understand.

    I think your GP is right on the HIV test - CFS/ME diagnosis is through ruling out other conditions and it is amazing how many conditions are similar in places to CFS/ME.

    There is a Dr in Harley St - I don't know England so can't tell if its close to you but he is private so take your wallet - Dr William Weir 02074678478.

    Good luck

  • Hi there,

    The ME Association publish a Purple Book of info that it will send to your GP for free if you request on their website.

    Your GP is right to do more blood tests - an ME diagnosis is made by excluding other possible conditions (that's possible conditions - not likely conditions - so don't worry about it, he doesn't think you've got HIV, he's just being thorough).

    If he's found a rheumatologist who will see you then that is a good thing - lots of people who have no local ME specialist are just left to get on with it alone. The rheumatologist will be able to rule out other auto-immune conditions (Lupus for example) which may be over looked by a specialist ME clinic - my ME clinic didn't do any further tests so I do still have tiny niggles of doubt I've been misdiagnosed.

    Even when/if you do get your diagnosis (which sounds likely) there won't be a massive change in your disease management; just a bigger toolkit of drugs, potentially help with pacing and relaxation from an Occupational Therapist and psychological intervention to help with any stressors that are getting in the way of your relaxation (stress does make us worse).

    A diagnosis does help with peace of mind though, it helps others take us and our condition seriously and means our employers have to make allowances for us if we're still able to work.

    The NICE guidelines for CFS/ME are available with a quick Google search, it's helpful to read these, you'll understand the process your GP is following and know if he's missed anything out!

    Action for ME have some very good information sheets and hand-outs on their website covering allsorts of useful topics such as info for employers, info on benefits, help for carers, how to pace and the like.

    My MO with Doctors is to accept everything offered (except some drugs) with an open mind, then no-one can say I haven't engaged fully with treatment offered and I 'don't want to get better' (disgusting some old dinosaurs still believe this of ME patients). I'm even seeing the Clinical Psychologist!

    Hope this helps and good luck to you,

    Best wishes X

  • I know the feeling of how frustrating it is it is a long process and GPs one of mine especially kindly admitted they don't know what to do for this illness.

    A rheumatologist is a great step better to not expect too much though I hope you may be pleasantly surprised. They are somewhat unsure and sceptical to diagnose It.. You may may be lucky and get someone experienced in treating this illness as some rheumatologist's are. Research it yourself and be confident in what you believe to be relevant to your symptoms. They tested me for HIV too it's just a precaution.

    Take care of yourself x

    and check out cfs healthcentre.com

  • Thanks for your reply. Im beginning to think that maybe the rheumatologist will be helpful. I just hope I dont have to wait too long to see one.

    David x

  • It did take about 6Months to he seen both occasions I attended good luck x

  • Ok thanks. Just be good to get a diagnosis. Then I can plan ahead.

    just for piece of mind.

    David x

  • I was about 90% sure it was M.E from ticking off every symptom on nhs choices and hearing other people's symptoms etc. on here..

    It will be a relief when you are diagnosed. I felt it was harder after it was a definite though took up more space in my mind. But if it is M.E you will adjust to it..

    Wish you all the best x

  • Hi, spoke to my GP yesterday and agreed to see a rheumatologist. Hope its not a long wait.

    I am feeling tired now as been for a walk with my family as it is half term. I dont have the energy but I have to push myself so I dont let my family down.

    How do you cope with pushing yourself.

    David x

  • Hey,

    That's great you've got an appointment to see the rheumatologist. It took 6Months each time I went.

    I hope you get seen sooner but if you don't just keep in mind it's the same for everyone.

    Don't be disheartened if it doesn't give you any answers. I would take a diary of symptoms you are experiencing.

    It's natural to want to do things for your family but please look after yourself, I know it's hard to let people down and easy to feel the need to please everyone.

    You have to put your health first though. If you push yourself it just causes you to burn out and takes longer to recover..

    I still have to remind myself to take this advice sometimes. It is difficult but worthwhile it's all about acceptance.

    Accepting your limitations will make it easier to be okay about resting and taking it easy. I really mean this from a kind & caring place :)

    hope you had a lovely term break

    Shaunna x

  • Thanks for this message. You are very kind and thoughtful.

    You are right it is about accepting my limitations, but it is other people recognising my limitations.

    Take care.

    David x

  • Aw thanks You're welcome, it is difficult to get other people to understand even those close to us.

    You could try the M.E action helpline anyone can call it.. For general information on the illness, support for people with M.E and their carers & help with benefits too. They are there to inform and listen

    Take care of yourself too x

  • Good to hear about this helpline. Where can I find out more. Thanks.

    It is frustrating trying to let others know how I feel. Especially my family.

    Do you have family, I mean husband, kids or with parents. Dont mean to be nosey, just interested how you tell others how you feel.

    Im off to bed now. Good night. Chat soon.

    David x

  • Here's a link to the website the M.E contact helpline

    meassociation.org.uk/

    There is a few M.E charities it's actually the M.E association I said m.e action before lol brain fog the M.E action is another website though.

    Yes, no problem I live with my family still at mum and dads..Lol need alot of help day to day or I'd venture the possibility of having my own place.

    You do get used to dealing with loved ones not understanding. I have no hesitation now reminding my family of my limitations,, sometimes I do still find it hard to admit I need their help.. or that I can't do things..

    Shaunna x

  • i strongly recommend that you stop pushing yourself and rest when your body tells you.i spent two and a half years in horrendous amounts of pain and exhaustion after following advice to get more exercise. and have now been ill for 25 years.see the h b foundation for me for more free info on exercise and resting .

  • Night, I'm off to bed too need to keep my routine in check x

  • A Rheumatologist would possible rule out Fibromylgia which has some of the same symptoms M.E. has although they are very different in other ways. Do you get tired talking and being with your family? Do you find noise and light difficult to cope with?

    Karen

  • Hi, I have a date for the rheumatolgist, it is the 14th July. I hope I can get some answers to why I feel like this. I saw a psychiatrist yesterday who told me that all my symptoms are as a result of having depression. I know that might be true but ME seems to explain more.

    You are right that noise and light are difficult to cope with. I was in a garden centre the other day and couldnt cope with the noise.

    If I have ME then I can put my symtoms down to something and then I can find out about the best way to live with it. Hope that makes sense.

    David

  • They may be due to depression and often people are misdiagnosed. One way to decide, I've found, is that with depression you have no motivation to do anything, lethargy comes from the mind/brain; with M.E. the brain/mind wants to do things but the weakness and exhaustion comes from the body. Hope that makes some sense.

    Of course, even doctors get M.E. muddled up with other things so it's not surprising that patients do too! M.E can be a dustbin diagnosis.

    Karen

  • Thanks for this. Yes it makes sense. I went for a walk with my family this week as they are off school. I wanted to go and I did it b6t after I felt completely drained.

    So I do want to do things but my body just cant manage.

  • Well, that doesn't sound like depression but it may be another treatable illness so it's worth getting more investigations to check.

    Karen

  • if you can't cope with light and noise, you need to look at your adrenal function. That is a classic symptom of adrenal fatigue. Have a look at James Wilson's book on the subject.

    Have your cortisol levels been checked?

  • Thanks for this. I will look into it. My gp will get fed up if I keep mentioning other things, but I just want to know whats wrong.

  • It's ok I got sent there last month he agreed but said my symptoms were too severe due to tremors,falls,dizziness and my balance.He sent me to neurological who specialise in this he told me I had chronic fatigue syndrome and neurological functions problems.But got my medical notes and the guy at rheumatology thought it was this but wanted a second opinion.Also bloods will get tested all the time all sorts just to rule things out I got ten tubes taken this week.My first dr was useless so I changed.I would say go to rheumatology and they can help and rule things out I got MRI scans.its terrible and a never ending story but chin up and get to rheumatology.

    Tony

  • Hi David

    Well I was just browsing this site because of my own issues and came across your name, so read your post - hi!

    I do think referral to a Rheumatologist will be helpful - they may or may not be able to treat your joint problems but they are likely to listen and take them seriously.

    I found seeing the Rheumatologist the most helpful think of all but I do suggest you go armed with a full history. I took a full brief history including details of what each of my parents suffered from and the age at which they died, then my personal history detailing all my symptoms during my lifetime including emotional stress. My history included such things as being double jointed as a child, emotional trauma from being bullied, and the impossibility of ever getting over even the lowest high-jump or horse in gym - I made the points in brief outline as that way it would not take long to read. I went on to outline symptoms during adulthood, each one with approx age - so... age - 30 sciatica following birth of baby, 40 shoulder pain ongoing after carrying heavy books in teaching... In other words give a picture of your health over your lifetime. Mine only comes to one side but is comprehensive and allowed the specialist to diagnose almost at a glance - he said my symptoms and history were very typical for people who experience fibromyalgia. That does not rule out ME and one of the reasons I came onto this site was to see whether other people with ME felt my symptoms were in any way typical as I have been repeatedly feeling ill - but I will write about that in my own post.

    Hope you find the rheumo specialist helpful - at our local hospital they get the best feedback of any department, usually they are hands on people such as physios and real experts in their field.

    Suexx

  • Thanks Sue. Im hoping to get some answers to why I feel like I do. x

  • I am in exactly the same boat David, feel dreadful right now, temperature whoozy, ears painful and popping, been like it for 6 days along with coughing up thick gunge but GP says no chest infection...

  • Hope the chest infection clears up soon. That is enough to drag you down without living with all the symptoms connected with depression. I saw a psychiatrist recently who confirmed I had depression, which I knew anyway but also said all the physical symptoms Im experiencing are symptomatic of depression. It seems somatic syndrome is quite serious. So I will wait and see what the rheumatologist says.

    David x

  • I have learned that somatising is progression from depression when the feelings have already been shared whereas if the feelings have not been shared somatising is a backward step, making the body pay the price because it is too painful to acknowledge negative feelings. You have shared your depression and I think that you are allowing yourself to be unable to cope and be dependant upon others to help you and that you are now feeling what was there stored up in your body but you could not expeirence before... Hopefully in time as you get a diagnosis you will find the symptoms become less extreme - oh, and by the way medics will rubbish what I have written :) Sue xx

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