Hi all, been through hell for the last year, currently I am in pain, exhausted and worried sick, I am also fighting with DR's when I am really too ill to fight.
The rheumatologist I saw said he thought I had CFS yet he didn't give me any options.
Below is my latest trip to the DR's and the reply's I got from her, I burst into tears in front of her and all she could say was have a nice holiday.
I went back to my DR yesterday to speak to her and tell her I was not coping with either the pain or the exhaustion, I was also a little worried as I have been having pain in my calf (new pain) and am flying long haul in a few weeks and I also wanted to sort out my pain medication so that I would have enough for the time I was away.
The DR's response was "well its great that nothing was found by the rheumatologist aye"
"why do you need painkillers?"
and the classic "I would only be worried about a pain in your calf if it was a DVT" yes I replied that's why I am reporting it!
I walked out crying, totally forgot to say that the rheumatologist told me I have arthritis in my feet, that he thinks I have a nerve issue in my feet (hence the amitriptyline) and that he thinks that the exhaustion is due to chronic fatigue syndrome, I am at a loss as to where to go for help or how to explain to anyone that the DR'S are basically ignoring my plea's for help, she looked at me yesterday as if I was mad and obviously doesn't read her patients notes.
I have been crying all night over this, because all I want is to feel human again, who can I talk to about what I am going through if not the DR, and what do I do if the DR fobs me off, to be honest I am feeling suicidal not because I am suffering but because I am being treated so badly by the DR.
I hope you manage to get a little further than I have and I wish you the best of luck with the fight you are about to begin, for me I fear the fight is over, I have neither the energy or the right mind to continue to make myself so upset, I will now just continue to struggle with my life.xx
has anyone been met with such lack of empathy from their DR's or had such a severe issue with getting anyone to listen to them.x
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little8571
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Sorry to hear you are feeling so bad but I guess most people who have ME/CFS go through the same agonising process to some degree or other. I myself had years (and I mean years) of going to the surgery, complaining that I didn't feel well, having tests and examinations only to be told we can't find anything wrong with you. And I actually think our practice is a really good one.
The way I see it the problem is the medical world still doesn't really know what the condition is, so there is no actual test for the condition. Difficult to test if you don't know what it is you are testing for. Sadly many doctors seem to work on the principle that if you can't find it, then there is nothing there. I guess that is because medicine is a science and science requires evidence.
But clearly if you keep getting symptoms, particularly pain, then something is wrong. We get pain for a reason. At one point I even had a doctor say to me "some people are just susceptible to viruses, you'll just have to live with it". Well I'm no doctor but I couldn't believe that attitude. Surely illness happens because of some trigger or other, it doesn't just materialise appro pro of nothing.
Unfortunately it's probably not what you want to hear, and trust me I know how frustrating it is to do, but I think you need to keep going back to the doctors. Don't do what I did and keep seeing the same doctor in the belief that the more they see you the better they will understand your situation. If possible try and see a different doctor every time, you never know like me you may eventually find one that believes in and understands the condition. Like you I found it soul destroying to keep getting knocked back and when you feel rough it just makes it worse. And it can be a very lonely process. But I think what you need to do is go back every time you get a virus or other symptoms and prove that you keep getting unexplained illness. If they see it often enough they might start to believe you.
If it is CFS/ME then because there is no test they use a process of elimination to diagnose. Basically they assess your symptoms, think of all the potential possibilities, then one by one they test for them. After each elimination they move on to the next and eventually if nothing else remains they diagnose ME/CFS. It can take up to a year to do but if you can get that far it is progress so don't stress about it. With this condition stress is the last thing you need.
You may or may not have ME/CFS, only a doctor can tell you that but if you keep getting symptoms then something is wrong and they need to see that. Keep badgering them and don't forget to mention what the consultant said. But above all please try not to stress as whatever is wrong stress will probably make it worse, and if it is ME/CFS it is guaranteed to make it worse.
Again I'm sorry if this is not what you want to hear but trust me it can happen, you just have to dig deep and find the strength from somewhere. Remember it is for your benefit and therefore well worth the effort.
Sorry but I forgot to mention that part of the reason why it took me so long to at least get a diagnosis was because I got so frustrated I gave up going to the surgery every time something was wrong. I even got to the point where I began to think I was wasting their time. In hindsight I think that meant they never truly realised just how frequently I was everything from under the weather to really ill. Not letting them see that didn't help.
If you really are feeling rough all the time you need to keep chipping away at them until they realise it and start to dig deeper.
Thanks for your reply, I know what you are saying is right but at the moment I am now in the mind-set that I will just not bother, as like you felt once, I feel either like I am bothering them, or I feel like I am a hypochondriac, the trouble is all the time you visit and they treat you badly, or dismiss what you are feeling it doesn't make you want to go back, it actually takes so much energy to even get to the DR in the first place, so to go and be fobbed off really drains you not just physically but mentally.......I know you have been through this so I know you understand how it is, and at the moment I am so mentally drained I just cant face going back, I am in a very low mental mood and am just spending my time laying in bed and sleeping, its the best way at the moment because when I am asleep I can forget about the pain and of course be less stressed.
Did you feel as if your DR was ignoring you or belittling you at times, because I do, even when I started crying in front of her (through frustration) she just said "have a nice holiday".....I mean come on are DR'S that inhuman, and she was a woman too, when people cry it means they are upset, yet she didn't seem at all bothered.
I know I have something wrong, I have for the last year, and this was all triggered by a flu type virus which had me laid up in bed for a week, I have never been the same since, funnily enough my mum was hit with a very similar illness as soon as she hit 50, she saw the same consultant that I did, he told her nothing was wrong and she can barley walk today, she has fought but like me has now given up as no one listens.
I don't want to be like this, but like I said I know when I am not right, and in the past I was always right too, like the time I had an ectopic pregnancy, I knew I was ill but the DR's told me all was ok, I nearly died when it ruptured, did I get an apology for them getting it wrong, no of course I didn't, and its pretty much the same now, apart from the fact that I have already lost a year of my life and every day is now a struggle, I have a family, my youngest child is 12 I hate her seeing me like this, my marriage is a mess, as I cant fulfil the wifely things (total lack of drive, just nothing there at all) and because of the pain and burning in my feet I walk like an old lady, I am 44.
I will try the DR again, but for now I cant for I fear that if I am treated badly again I will end up coming home and ending it all, I have only just finished a 2 year forensics course at college which I passed with flying colours, that was with an aim to getting a good job, I struggled through the last year but I want to get better so I can get that good job, how can I do that if the DR's wont take things seriously.
Sorry for the rant, but sometimes its easier to speak to others who have been there and done that.
I will keep you updated when the day comes that I muster up enough energy to take on the world again, love and peace to you, jane.xxx
i admire that you managed to stick through your college course it must of required a huge amount of effort with my c f s/me i have had to almost give up on reading for pleasure as the muscles behind my eyes create terrible pain if i read more than half a newspaper. unfortunately c f s/me has many symptoms that fluctuate so you never truly know whether your having a better day or a worse day until the day is over . yo can compare your symptoms against those on the hummingbird foundation for m e website.which has the most information of any site i have seen.i hope this helps you . you may also want to find a different dr.
I feel for you, I really do. It's a tough battle to fight. Firstly, and perhaps most importantly, please know that you are not alone, you are not going mad and you are not a hypochondriac. If having a rant makes you feel better then as far as I am concerned please go ahead. I fully understand and I am sure anyone else on this forum will understand too.
So much of what you say rings bells with me. My sister has had the condition for nigh on 30 years and whilst it is not believed to be hereditary, yes it does tend to run in families. And my condition was precipitated by a serious bout of bed ridden flu, many throat viruses including Epstein Barr (the one that causes glandular fever), the stress of 5 lots of redundancy in 30 years, financial problems, two lots of iron deficiency anaemia, two lots of B12 anaemia, an attack of shingles and dozens of ear and water infections. And still no one cottoned on that I should not have been getting so many infections unless something was wrong.
Before my diagnosis when I was backwards and forwards to the doctors I was still working full time (did for 30 years). In the latter stages I kept getting told by my work you need to sort it out as there is clearly something wrong. I'm sure my boss wasn't saying sort it or you are sacked, she was sympathetic, but even she could tell I was not well. That I guess is part of the problem. She saw me 5 days a week and your doctor only sees you every now and then.
Which is part of why I think you need to let them know and see every time you are not well. I know it's not easy but because there is still a lot of scepticism and a huge lack of knowledge about the condition you need to keep putting it in their mind that you think that is what you have.
In fact it is true to say that a lot of this condition is about getting to grips with it yourself and as you say getting your mind in the right place to be able to do that. I wish I had a magic bullet to tell you about but as far as I can tell there isn't one. It just seems to be a question of chipping away at them and finding what works for you. If I can remember what triggered me into taking the fight to the doctors I will let you know, but honestly I don't remember any one thing. It just seemed to be several different factors that brought on an epiphany that it wasn't going to fix itself and no-one else was going to do it for me.
I am lucky in that my practice tends to run with around 8 or 9 doctors at any one time and it was only by luck that I happened to see my current GP because she was the duty doctor on the day I had my breakdown at work (my last day at work). I finally found the one doctor that seemed to listen and understand and was prepared to investigate. They are out there but they take some finding. Of course now I stick to her like glue and she has been a god send for me.
Your current doctor doesn't sound very sympathetic, if I was you I would try someone else until you find someone who listens. I know what you mean about when you burst into tears. Surely that told her that something was wrong, not least with your state of mind. I find you need to tell any doctor you see absolutely everything. Don't assume they have read your notes and tell them everything you think is relevant. It usually helps me to write a list down or type one up and take it with me as the brain fog means I usually forget.
And definitely definitely tell someone about how it is all making you feel. If nothing else they really should treat you for that. I've been on anti-depressants for a while. I fought against them for ages but wish I hadn't because they do seem to take the edge of the worries.
Please listen to your body, get as much rest as it tells you you need. Pace yourself as best you can and worry about as little as possible (easier said than done I know). And as soon as you find the strength I hope you can get yourself sorted.
Hi there. I think a lot of the forum members will identify with you. I certainly can. Margaret has given you some brilliant advice so there's not much to add. If you are working think about going off sick, if only because of the depression you are experiencing right now. Get lots of rest and work out how to pace the energy you do have. That's not doing as much as you can but stopping before you get too tired to allow your body to rebuild and maintain a steady energy level. If it means just eating and sleeping for however long it takes then that's the way it has to be. You are ill and need looking after. The best person to do that is you because only you know how you feel. I have found a supportive doctor but there was a time when I used to leave the surgery in tears. Even though she is good I still refer to her as my drug supplier!! That's all she can do - give out drugs to relieve the various symptoms.
I found it helpful to learn relaxation techniques and meditation. Books I found useful for this were Full Catastrophe Living by Jon Kabat-Zin (although it's over-written I still use the full body meditation 13 years later), The Endorphin Effect by William Bloom and Living Well with Pain and Illness - can't find it and can't remember author but it should come up on Amazon. There are various meditation cds available which can be really useful for calming the nervous system. It's a case of trial and error to find ones that resonate with you.
I do hope you will be able to get the support you need and deserve. Meanwhile you have us lot!!
Thank you although I am suffering at the moment I hope to regain enough strength to fight again, and that's what it is a fight, the support here is great, not because people have suffered too, but because at least we all understand the frustration this brings, I will look into the books, thankyou.xx
Yes, this is all true. We run an M.E. Support Group. One person has been ill for 5 years with no diagnosis. She got new symptoms all the time and was to and fro to the GP each week until he told her: "...leave and never darken my door again." She went to speak to the Manager of the Practice who seemed very sympathetic. But later she had a letter saying that she would be asked to leave the Practice if she didn't change her attitude (or words similar). She just wanted to know what was wrong with her, get some treatment and recover as she wants to live a reasonable life! A person from the M.E. went to the GP with her but he was not pleased and addressed her as 'you people'. Later he asked her to come and see him without her but she could bring a friend or relative. He told her not to read books or talk to Support Groups as she is gaining more symptoms from doing this. She had been ill for more than 4 years before she contacted us! We are now in touch with the Minister of Health about her lack of a diagnosis. None of the GPs in that Practice will diagnose it and one of them mentioned that it is not a 'real illness'. Conversely, when we support people to apply for PIP and they see a medical assessor, so far they have been understanding and supportive of the condition. They have asked the question, "Are you seeing a Specialist?" and have been genuinely suprised when told that there is not one available in this area of the UK. But the assessors accept it as a genuine disability with moderate or severe limitations.
Maybe worse are two people we know who have Severe M.E. and are bed bound but the medical people cannot believe that a person could be ill to that degree with M.E. and SS just decided that the persons are choosing not to get out of bed and when their backs are turned, they are jumping around doing normal things, or, if they tried they could do most things but they have just stopped trying.
Please do not feel forced to try to do more and more or to press on when you are exhausted. Listen to your body and allow it to rest. One of my friends did exercise as suggested by her GP and an OT to whom she was referred. She joined a Club and tried to swim and exercise and bought herself an exercise bike but she was trying too hard to get well. Exercise must be directed by a person who really understands M.E. and will help you to only do very gentle exercise according to your personal requirement.
I'm surprised, pleasantly so, but nevertheless surprised when you say you are getting support and understanding from the PIP assessors. Can I ask if you are referring to ATOS doctors assessments because in my experience that was not the case. When I had my ESA assessment by the ATOS doctor she was very pleasant but VERY clearly simply going through a tick box exercise. The questions and tests bore no relation whatsoever to how the condition affects your daily life. She even kept saying "I know you say you can't do this continually but can you just" and then gave me some ridiculous little manoeuvre to make like reaching above my head as if that bore any relation to living with a fluctuating and debilitating condition.
Consequently I was put in the work related activity group. Not wanting to give in I stupidly thought ok let's give it a go and try and get myself back to work. I suffered a frustrating and painful year of stress caused by pointless and rigid expectations of what I was supposed to be able to achieve. NO consideration was given to how I was coping, only what orders I was supposed to follow. This all lead to a series of breakdowns and set backs that have put me almost back to square one and now I am frightened to push myself in any way to move forward again. The setbacks were so bad that eventually they saw I am not well enough to return to work and, after a strongly worded letter and phone call from my GP, I have now been placed in the Support Group. I hope you are referring to whoever the new company is that has taken over from ATOS and that they are more understanding and sympathetic than I have found ATOS to be.
The other thing I wanted to mention was you say "exercise must be directed by a person who really understands M.E.". I absolutely agree with that in principle but have you any idea who that person is or how to find any such person. I had a spell a while ago where I was exercising myself and getting support from a friend who is a personal trainer, all the time trying to regulate my exercise according to what my body told me. It was initially successful but as you say that success went to my head and I overdid it big time (one of the several set backs I had last year). Since then I have tried to find someone qualified to help but have got absolutely no where via the NHS. Unfortunately as I am on benefits I can't afford to pay so if you have any suggestions I would be grateful.
Hello Margaret. Sorry to hear all your problems. Quite usual it seems! Very sadly! Here in Wales we are trying to help people to get a service of any kind. Just a friendly word, in some cases!! CAPITA have taken over here. The other day a woman with Fibro had a PIP assessment at home and the young man was so pleasant and kind. He had been an ambulance person...forget the title he said...so he was really nice to us. He said that 18 out of 20 people he sees end up in tears, as he realises how hard it is to talk about their health and how it affects them and what they now cannot do.
So far everyone has been awarded top care and mobility, except one who was marked down by a very young woman assessor. When we asked for a reconsideration and pointed out that she has written down things differently from what was on the form and that the woman's 'mental state' was just not showing because she had been a professional woman and was hiding her anxiety. We stated that she could not have seen the assessor without my being there, as she was too anxious and would not have coped. They then gave her back the full Benefit.
We went to a meeting some time back in Bristol and there was a very good talk about exercise, as done in the USA for people with M.E. They described the gentle nature of doing it with a very basic baseline, such as sitting up for just a few minutes a day if someone is very ill. Of course, they have private health insurance in the USA. In the UK one is very lucky to get anyone who understands the need. If one gets a referral to someone, it seems to be for 6 sessions and they expect to race through exercises and see immediate improvements, not a few very gentle movements! If people say that they cannot do the exercise (or it is making them worse) then they may be labelled as not being willing to co-operate with treatment. One woman we know was sent by her work place for treatment and had 12 weeks of graded exercise and she said that they understood and she was able to do what was required because it was over a longer period. Of course, that was private again and she had relatively mild M.E. She was managing to do part time work, albeit spending much of her home time sitting in a chair wrapped in a blanket! Not sure how well she is getting on now however.
Glad that you got into the Support Group. Yes, that's where you ought to be! Thing is, that if you co-operate with the tests when asked to do so, they write down that you can do x y z! But you cannot do it more than once and no-one would consider an employee who can't get to work until the afternoon, or may be off work for 3 or 4 days a week, falls asleep, drops things, or collapses and has to be taken home etc etc. It is so important to fill the forms in as fully as possible and if one really finds it hard to leave home, insist on a home assessment and not try to do things that one cannot really do, just because one is under pressure to do x y z!
I live in England so as you say that must be the difference with the medical assessments. Glad to hear that you are having a slightly better time of it in that respect in Wales. Let's hope some of that attitude finds it's way over the border. It is sorely needed and would make such a difference overall.
I'm lucky because it is my GP that is supportive and understanding and has helped me fight the battle with the DWP. Frankly I don't know what I would have done without her.
Thanks for the info with regard to the exercise. If you (or anyone else) become aware of a relevant NHS exercise programme (or a very cheap one) I would be grateful of the heads up. I live in Gloucestershire.
In Wales the people with M.E. feel very deprived as there are no Specialist who deal with M.E. CAPITA ask the person, W hat treatment are you getting and which Specialist are you seeing? People are fortunate to get a diagnosis and if they do, there is nothing more that is done, generally. One woman has been waiting 5 years for a diagnosis and the GP finally agreed on Fibromyalgia but will not consider M.E. (as it is not a 'real illness'). The Minister of Health ran a Task and Finish Group for Wales that put M.E. under Neurological Conditions and has asked each Health Board to appoint a Champion for M.E. They are now meeting together...but two Boards have not yet appointed anyone. We are due to meet the one Professor with two people from the Welsh Assembly about this woman's case but we also have two seriously ill people whose needs were getting disregarded. One just had a Case Conference with Health and Social Services and they are applying for Continuing Health Care Funding for her. The other's husband has just lodged a Complaint and the Advocate who just started work with them (I asked for one months ago) thinks that there will be a Case Conference for her soon. It is a sad and sorry situation. Mostly people cannot be referred to an English Specialist from Wales. Some children have been referred to Bath, I think it is, as there is a special Children's Service there. One woman who is about 32 now has had M.E. since she was about 11 and had little education because of it, even though she had won a Scholarship to a top school. She's more or less bed bound now and cared for by her mother. Yes, only a glimmer regarding the Benefits. I thank God that he gave me the insight to help people to fill in the these forms with them and support them through assessments. M
Yes the situation with specialists is bad. I would even say effectively non-existent. One of my sisters has had the condition for nigh on 30 years, I have now been diagnosed for 5 years (probably had it longer) and neither of us know of anyone that has ever been referred to a specialist. I am not even aware if one exists. There is a "specialist clinic" in Bristol but you only see an occupational therapist there not a specialist doctor. And that is if you are fit enough to travel 40 miles or however far it is to see them. Which like me I don't imagine many people with the condition are. All I had was one visit (couldn't manage the travel any more) and about 8 phone call follow ups. It was welcome for what it was, but basically was nothing more than confirmation of diagnosis, a basic discussion around pacing etc and a bit of moral support for a few months. Better than nothing I know but not an answer at all and certainly not the same as "seeing a specialist".
Thank heavens for people like you or else all us sufferers would be in an even worse place than we are. Please keep up the good work that it sounds like you and your colleagues are doing for desperate people.
Yes the people with M.E. are very glad to have a group to come to, but then there are those out there who cannot benefit from a Group as they are too ill to attend even though they really want to. We do support people with texts and calls too and try to get other people on board to support them...not too easy!! Anyway, we do the best we can!
There is the famous private 'specialist' in Wales and when I lived in Berkshire we drove there before dawn to see her in the middle of nowhere, with my friend asleep on the back seat. My friend had treatment from her for a while, one consult and several phone consults but although she tried hard to follow the recommendations and took the medication, she is still ill for about 10 years.
Just off to assist a young man with M.E. and Asperger Syndrome. He's really struggling.
So sorry you're in that horrible phase of trying to get a diagnosis - it is very up and down emotionally because at least with a diagnosis (any diagnosis) you know where you stand and can begin to deal with it.
I agree that you have to keep at your doctor, or change to another in your practice if you have no confidence in your doc - write down everything you want to say when you are calm and read it out to the doc; don't apologise for this, the doc should understand.
Unfortunately, if it is ME/CFS it takes time for a diagnosis as there is no diagnostic tool as yet and the doc will go through other conditions to eliminate them first.
Try not to be upset in the surgery, but calmly say what you would like to happen. Another good idea is to take someone with you who can back up your description of how your conditions affect you.
Can you contact an ME/CFS group maybe, to talk to others in the same boat ? Action for ME have info of groups on their website and have a helpline for advice actionforme.org.uk
I hope you manage your holiday - try to rest as much as possible for the week before the flight.
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