I've been told that some Dr's don't believe in ME!!??

Hello everyone, this is my first post and I'd just like a bit of advice please.

I went to see my dr last week as I'm struggling a lot with tiredness. When I say tiredness I mean that some days all I can manage is to have a bath. Even if I've slept all night I get up and feel just as tired as I did before bed and then fall asleep on the sofa by 10am and just doze until I have to collect the kids from school. I have hypermobility syndrome, restless leg syndrome, endometriosis and possible adenomyosis as well as bad IBS symptoms. I've had chronic back and pelvic pain for the last 5 years (since I had my son). Had two major pelvic infections which have left me with adhesions in my pelvis. I just don't know what to do any more.

My Aunt is a nurse and asked me over Christmas if I'd been diagnosed with ME? I knew a little about it but that's all, hence going to see the GP and asking him about it. He said "well some Dr's believe in ME and others don't"!!

I have an appointment with a pain management specialist at the end of the month and my gp has told me to take a list of my symptoms and hopefully these pain specialists will be able to help me with them......here are my symptoms...

-IBS which I'm struggling to find triggers for

-pelvic cramps

-back pain

-joint and muscle pain. My shoulder muscles burn after only doing the washing up!

-utter exhaustion, not made better by sleep

-arms and legs go numb when I'm in certain positions

-always had low blood pressure

-head rushes and feeling dizzy

-problems sleeping

-night sweats caused by the high doses of progesterone I have to take

-irritability and depression type symptoms

I'm really hoping this pain management will help but surely all they deal with is the pain? My gp seems to think that they'll put me on anti-depressants and all will be fine but I highly doubt that! I have two children, 7 and 5, to look after and my bf works away from home all week so I have my mum help me al the time which isn't fair on her as she's 68 now :(

I'm unable to work because of my symptoms and have been denied DLA and any other benefits as my bf earns too much. I'm having to rely on him completely for money which makes me feel even worse!

Any ideas people? Do these sound like ME symptoms? If so then how do I convince my Dr to give me the diagnosis?

Thanks for reading sorry about the length of my message xx

9 Replies

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  • Hi Missteal

    Well, the sad history of ME (whatever this serious and disabling illness turns out to be) is that

    up until the 1970s it WAS known as that - is still classed as a neurological illness by the World Health Organisation - but was sort of taken over by the psychiatric medics, I think

    because at the time there was a huge debate going on over the name ie Myalgic Encephalo-

    mylitis, which means inflammation of the brain and muscles.

    It was thought there was insufficient proof of this from biomedical research I think. This is as

    far as I understand it. Doctors often label us as having Chronic Fatigue, which is a

    vague term that can cover all sorts of conditions including depression, but which goes

    nowhere near describing the illness ME/CFS. The cardinal symptom of ME is the severe

    post-exertional fatigue which is unique to ME. It can be later that day after exertion (which can be minimal) or the next day, or the next. This is very unusual fatigue.

    So we were then left with doctors who didn't know what to make of us - in Lothians if a doctor

    suspected some kind of Chronic Fatigue illness they could refer to the Infectious Diseases

    Department, which is at the Western General Hospital. A doctor there, Dr David Wilks, has

    been seeing ME/CFS patients there for some years now. However, until now there has

    been no referral on, unless he suspected some other condition apart from ME/CFS.

    There is now going to be a referral possible from your GP, or from the Western, which is at

    the Astley Ainslie, almost next door to the Pain Clinic there. But this clinic will only offer

    Cognitive Behavioral Therapy and Physio after the consultation. However, it is the first

    ever designated service for ME/CFS in the Lothians and follows on from the PACE study,

    which was partly carried out at the Western General Hospital and was a trial to find out what

    was the best form of management for ME/CFS.

    Of course, what everyone really wants is biomedical research to find out what the illness is and how to treat it !

    Your symptoms sound very like ME but maybe you can ask for a referral to Dr David

    Wilks at the Western if you are in Lothians. There should be a consultant your doctor can

    refer you to in whichever area you live. A consultant diagnosis helps with applications for

    benefits too.

    My ME illness began with what was thought to be an enteroviral illness and it left me with

    IBS, along with other symptoms. Recently I was prescribed Amitriptyline in the lowest

    dose - I took it for over a year and the IBS appears, at least up til now 7 months later, to be

    virtually gone. It was prescribed solely for IBS but it might help with your sleeping too I

    believe. This medication can cause acid indigestion though after a while. Plain bio

    yogurt is a help for IBS I've found too.

    So sorry you're having such a time of it - and coping with two young children too ! Know you are not alone and lean on family and friends without feeling guilty - you would do the

    same for them after all.

    Sorry this is a long email but it's to put you in the picture as far as ME/CFS goes. The two

    national organisations are Action for ME and The ME Association, both have good websites.

    You may have a self-help group too in your area. Recently GP Pathway for ME/CFS has

    been sent out to all GPs in Lothians for the first time.

    Very best wishes to you and your family.

  • To add to the above, it is not true to say that you cannot DLA because your boyfriend earns too much. You can claim DLA. If you were turned down for it, it would not have been because of too much money earned by him. It is usual for the first DLA clain to be turned down and you have to appeal. It is easier to get someone to assist you to fill in the form correctly and as fully as possible and then apply so that when you are turned down there will be plenty of facts to refer back to. Also it is good to send someone on your behalf to the tribunal (you state this in advance and say who it will be). It must be someone who knows your condition really well and will know what is in your form and additional notes (always photocopy your DLA form before sending it away). You will need to state that you are too ill to attend and that you are sending X to represent you. Or if you really feel you must go, take someone with you and do not try to look good. If you are exhausted, say so, if you are falling asleep trying to answer questions, just fall asleep in front of them. If you find it hard to walk, use a wheelchair. People tend to 'rise to the occasion' so that the Panel is misled because they look wide awake and answer all the questions or agree with one of the Panel when they say something like, "You have two young children and most people find children of that age tiring, don't they?" To which one is liable to reply, "Yes, I suppose they do." Rather than saying, "I know what tiring is but this is way beyond tiring. I am exhausted all day and have to lie down throughout the day. I cannot do anything and I rely on my mother who is 68 years old to do everything for me during the week. I cannot cope with life, my home, or my children without her. My boyfriend takes over at the weekends and cares for me as well as the children.

    Do you see what I mean? You have to spell it out to them so that they can see awful the place you are in and how ill you are. When they say, "But you walk to the school to fetch the children?" Remember to tell them that you have to force yourself to the limit to do that (or whatever), how many times you have to sit or stop on the way, or if you drive there...how ill you feel...or how you collapse on the settee when you get home again...how your mother has cooked the dinner ready or the children would not be fed (or however it works). "I used to be able to cook...clean...dance...teach...work...with no tiredness or fatigue at all. I know what I used to be able to do and I know how little my body will allow me to do now. I am so longing to be well and to do things well again but it is like having a really very bad flu. Have you ever had a bad flu and tried to look good and get up and go to work? But you just collapsed! Well that is how I feel, day in, day out! My body is fighting me and stopping me from doing all the things I want to do and need to do and ought to be doing." You could write all that kind of thing down for your representative to tell them. "I am honestly very, very concerned about...she is so ill, and it is so sad that ME has made X... so incapable. She wants to be a normal happy mum and she is so upset about having such a serious condition that has ruined her life and prevents her from enjoying her lovely children."

  • VERY GOOD ADVICE.

    I had my E.S.A. cancelled with no notice due to an ATOS report.

    I lodged an appeal with a very strong letter. The appeal was then sorted out in 15 minutes over the phone (no tribunal). E.S.A. re-instated, and backpayed.

    It is shameful but "He who dares wins".

    Good luck.

  • I know there has been a lot of arguments between doctors regarding ME/Chronic Fatigue.

    In my daughter and my case, we were really struggling to get our doctor to take us seriously. It was only when the head practitioner and also one of the doctors that said my daughter did not have ME, got ME himself and has now had to retire because of it, that the surgery started to take us more seriously. I think more doctors now are accepting that this condition is very real. Just like with other illnesses, ME has a certain pattern. Some years ago, brains scans were taken of ME patients and also patients with depression and the the ME patients had different patter in their brains to the ones who had depression. As we know ME starts off a physical conditon and not mental, as some have tried to suggest. Usually depression, if it is suffered, is because of the dibilitating illness that ME is and when peoples lives come to a standstill because of this, it is not surprising that depression can follow. Although I do not suffer from depression, I do get frustrated that I cannot always do what I want to do and my social life has suffered because of this.

  • Have had M.E for 18years now, my GP was really good and sent me to see a phycoligist before refering me to a consultant. They agreed I had M.E, and my GP did all he could do. I eventually took part in trials at GU , where I took part in all sorts of exercises and had biopsy's taken from my muscles at three different levels in my thigh' Results showed, that as soon as I exercise, the O2 levels from my muscles disappear. You need to get refered to a Phycologist to start with who can rule out stress/depression, then take your GP on and make him sent you to a Consultant.

  • I have exactly the same symptoms as you. I have been struggling for years.

    Because I have another neurological problem (neuro-sarcoidosis), and I take other medication for cancer, the good doctors ignore the C.F.S. They blame the medication I take, and the fatigue caused by cancer. When I remind them that I was complaining about the "fatigue" long before the sarcoidosis and the cancer, they have no response.

    The combination of CFS, Cancer, Sarcoidosis, and all the medication leaves me with zero energy and stamina.

    I am 62, with a "life shortening" illness. I am not bothering to fight on over the CFS.

    You are younger, and a mother. You need help. If your GP will not get you to a good specialist, change your GP.

    I can imagine how hopeless you feel, this is "food" for depression.

    Depression is "food" for fatigue. A vicious circle.

    If the neurologists find no problems I would suggest looking further at depression.

    I believe depression needs more than just drugs, it needs help from those around you, and at least a little professional psycological help.

    You do NOT need to be told "Don't worry it will be alright"

    STOP feeling bad about your mum helping, I'm sure she wants to, and enjoys it.

    STOP feeling bad about the money. That's what us men are for!!. I now depend totally on my wife, that's how life goes sometimes.

    Pain Management ? Yes great, but what about the cause of the pain??.

    D.L.A. Will need your GP's total agreement. Appeal it. They automatically reject a

    %age of applications to help achieve their targets.

    Is DLA entitlement tied to household income??

    The sun WILL shine again !!

    Thinking of you,

    GOOD LUCK!!

  • Hi, I think it sounds like M.E. symptoms. Unfortunately some doctors do have different opinions on what it is.

    If you're having trouble getting any answers from your GP try another. I saw a countless number of doctors before getting diagnosed, the majority would put it down to stress or tell me its probably nothing serious. Even the week before I was diagnosed a doc suggested I get back to work.

    You could be eligible for ESA while you work it out. You're best to put it to them as you've said on here! Sometimes it can be quite daunting when in front of a GP or even on a form to explain how you really feel. Get a family member to vouch for you also.

    I was lucky to find the right GP that knew of the illness and suggested that M.E. could be the answer. I was fed up after a year of going back and forth to the surgery getting nowhere. I finally went in all guns blazing, as I realised anytime I went I wouldn't want to feel like a hypochondriac and would play it down. Since its in my nature to seem fine when I'm not. I told him how I felt being ill was taking over my life and I was missing so many family and social occasions. I'd say I talked for a good 10mins until I was satisfied I'd covered all my symptoms and it worked! He was actually pleased to be the one to figure it after a year.

    Hope that helps :) All the best x

  • Now everyone applies for PIP instead of DLA. How did you get on with getting a diagnosis and getting the Benefits sorted? Would love to hear how you are now. Miriam

  • Hi It is absolutely vital that you know exactly what ME really is. It is caused by a virus similar to Polio that damages the brain in many ways upsetting the whole normal status of your body. It is normally for life and there is no cure, but there are many ways to help the fatigue and pain. As the mitochondria in your body cells are affected this means you have very little if any energy reserves. Every organ is affected. The more you do physically and mentally , the worse you will get. Exercise is no less than legalised TORTURE and will worsen your whole condition. GET and CBT should be BANNED. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    The results are very bad and only go to prove that medics who believe this has any help at all should read their text books ( not old fashioned wives tales. ) And beware of short term placebo effects.

    Please do not just take my word for it...Read The Hummingbirds` Foundation for ME.

    Online and up to date. Some of the worlds greatest specialists are to be found here.

    Get the TRUTH. Try and get your family and friends involved as well. Sometimes we need a champion to help us through the tough times...times when we cannot get out of bed !!!!. You need REST, lying down and help with the terrible pain you may get from your muscles. ME is similar in many ways to MS. Forcing yourself on will only prove to be far worse than you may have been told.

    You only get one life ! This is not a trial.

    I beg of you to read the above mentioned online site as it contains so much more information that for once is based on true proven research .

    I have done years of research myself and now am confined to bed with this terrible disease. I just want to help wherever I can. I have read some terrible cases of wrong diagnosis. Please don`t be another.

    PS Please make sure you have an adequate diet for ME and make sure your vitamins and minerals are up to date (ME depletes these in most cases ).

    Best regards................MITTY.

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