I have just had the most disappointing doctors appointment this morning and it's actually upset me so much I have felt the need to reach out to you on here to see if any of you have experienced anything similar.
I have had symptoms of exhaustion, pain all over my body, general confusion an forgetfulness an basically just feeling rather 'broken' on and off for YEARS now. There are times it is worse than others. Stress usually brings it on.
I have been treated for depression for 14 years now and I am now in receipt of CBT as recommended by my doctor. I have had numerous blood tests but it shows nothing. I understand CFS/ fibromyalgia is usually a process of elimination. I do personally feel I have one or the other.
Every time I go to the doctors because I am just feeling so lousy, I see a different doctor. I don't think this helps my case, because there is no continuity of care. I saw somebody I had actually seen twice before this morning but sadly he wasess than helpful. I asked if he could possibly write something for me to take along to my assessment this afternoon. I was aware it was incredibly short notice so I was willing to pay the appropriate charge. Not only did he say it wasn't necessary to bring anything like that along to the assessment (which I don't think is right), he said he didn't think it was necessary to refer me to the CFS clinic as the doctor I saw previously thought it was. He said that I do have a diagnosis: depression and that the 2 go hand in hand. I am aware of the difference between emotional/ mental suffering and actual exhaustion and physical pain though and I really felt he was dismissing me. He even suggested I was neurotic for focussing on this possible illness. I was so upset that he couldn't see that I really wasn't that kind of person. Basically he has made me feel like I am making a fuss about nothing! All I want is a diagnosis so I can get on with my life!
I am already in receipt of CBT and find it helps to an extent. I am a generally very positive person (which sounds strange I know, considering o have a diagnosis of chronic depression)! I eat healthily, I exercise, I volunteer at my son's school and am going back to college this Thursday. I really as trying my best and struggling on. Sometimes I feel I can cope. Other times I just feel so scared that it will all fall apart.
I am a single mum and my 6 year old boy needs a strong and happy mummy. I am now genuinely concerned that the medical assessment will manage to prove that I am capable of work and I will be forced into full time employment which I know I won't physically/ mentally be able to manage and I will have a break down. I have suffered around 3 breakdowns over the past 9 years.
I had a medical assessment in 2011 which resulted in my ESA being stopped. I found the assessment to be structured in such a way that all answers lead to the claimant being capable of work. I did appeal but it proved futile.
If I can't even get a diagnosis for this illness (which in my mind is reality), how can I expect to convince the assessor that I am genuinely ill? I feel so many people (my doctor included), think this 'illness' is all in my mind! I can't fully express how upset that makes me feel. In fact I am slumped on the floor with my worries cat next to me in tears as I type this. All I want is a bit of support. I am not lazy. I would love to have this illness treated/ managed and be able to work and earn my own money. I want to feel proud of myself rather than the fat waste of space I feel at the moment.
Does anyone else have experience of a doctor not believing them or a health assessment? Any advice on what to expect? How to cope with it?
Thank you for reading this HUGE post.
Love Rachel. 😢
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RachelHNC
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Hi Rachel, not a great place to be in and I am sure many here can identify with you. I felt my GP believed me to be depressed/anxious in the beginning however after seeing a Dr William Weir, (private - cost £200 I think), the Dr became much more understanding.
I don't think they know what's what regarding ME and like many they try and make what they know fit, and that normally means a diagnosis of depression and/or anxiety.
You need to find one sympathetic and knowledgeable GP stick with them and get them to look at the Canadian Consensus for ME/CFS:
Wow, thank you so much for your advice and empathy. I really appreciate it. When I turned up for the assessment, they were running so far behind due to staff shortages they ha to reschedule my appointment. So, I now have until 1st Oct to gather together as much medical evidence as possible. I do have another appointment with a different doctor on Friday, so hopefully she will be a little more sympathetic. I do wonder if the reason private practitioners have more time for you is because you get the service you pay for. NHS doctors are so stretched they can only manage 10 mins per patient and only deal with one ailment. It really is awful when you think about it. I have had to be so persistent over the last 2 years. The last year in particular because this condition seems to be getting worse. I am just so fed up with being sent away with nothing. No answers. Something is clearly wrong and I need to get to the bottom of it. Unfortunately there is no way I can afford to see a private doctor. I will just have to keep persisting with the NHS! I am so pleased you finally reached a diagnosis. What is the plan for you now? How are you in your illness/ recovery? I hope you are receiving the support you need.
Wont know about support until I try to go back/stay off work, it will be interesting to see then what sort of support is available!!!
When you go to the new Dr IF you can have read and have a hard copy of the consensus model.
Have listed down your symptoms and be able to go to the relevant part of the research, if you speed the whole exercise up where you can maybe they will devote that saved time into trying to understand.
GP's are really not much more than signposts, (sorry to any GP's reading!!), they know there is something wrong, if its not straight forward they don't know and have to/should refer on. With limitations on budgets there is less costly referrals for conditions like ours; I have RLS as well and they know next to nothing and appear to care less
Pity about the private referral, I doubt if I would have anything other than depression/anxiety had I not seen Dr Weir!!!
Keep us up to date with how you get on. Good luck with all.
For your next medical assessment, make sure you're having a bad day, we all know our triggers. However long it takes your body to react to something, do something physical and/or mentally challenging, like, oh I don't know, maybe some housework or a visit to the supermarket, that far ahead of the appointment. (For me I'd have to do that about 2 days beforehand).
Try and find someone who knows you at your worst to go with you. If you find driving or public transport difficult, get a lift and make sure they know.
I know they can't take cleaning, cooking or shopping into account, but tell them how hard it is anyway. (Strangely if your job was a housekeeper they'd have to. sorry brain's wandering a bit).
Anyway. Don't be positive and tell them what you can do, but what you can't or what you're struggling with. You need to show them what your life is really like.
Hope that helps.😊
Got to stop brain's gone walkabouts.
Hi Rachel! Sounds so familiar! It took me six years for a diagnosis of me/CFS and fibro! I eventually asked for copies of my medical records from doctors surgery after I was diagnosed and detailed all visits and symptoms on a spreadsheet in chronological order. Voila! It was obvious from day one but as you say the 5 minute allocation time is not enough for any doctor to make the diagnosis and if you don't have consistency it is also difficult for the system to work. Not a great deal of help available once diagnosed, referral to pain clinic for fibro and cbt and graded exercise treatment on NHS which are now old treatments if you look at the recommendations from the states and Canada. Early diagnosis seems key to prevent permanent damage to cell structure but not sure that's happening in UK. You need to find a good doctor who will listen. I was fobbed off with anti depressants for years, told I had non alcoholic fatty liver disease by one doc and another said that was rubbish! Told it was hyper mobility re pain by rheumatologist but physio said that wasn't the case, been tested for thyroid function and antibodies more times than I care to mention. All come back in UK normal range. CFS/me nurse good but only one in country! So discharged after three sessions as was improving. Tried to contact after relapse but had no reply and I guess I will have to be re referred. I feel your pain and frustrations but as raffs has said it is imperative you do your own research and find a good doc who will listen. Ps ..stress is a trigger for me as well as overdoing it. I have spent years running about at a rate of knots, working full time, mother to three, wife, studying at nights, coping with everything until something snapped. I now know work related stress, (doing the job of three persons on top of this) was that trigger and my body is no longer the same. The fight for diagnosis, knowing I was depressed as no one believed my symptoms just exacerbated it all so I totally understand where you are. Stay strong and don't give up. Eventually someone will listen and hopefully it will be someone who can join the dots! Take care Jax
Hope you are feeling the support and love from us all. Lots of good advice for you to mull over. I found I had to patiently educate my doctor. Try and find one doctor who you feel you can relate too and as Raff says take along some supporting paperwork. The ME Association have a good leaflet for professionals too. And because of brain fog write all your symptoms down and how you feel just as you have in your post. It will help to keep you on track and not get flustered.
Thank you everyone for your advice and support. I really appreciate it. Copies of medical records sounds like a brilliant plan. I will arrange an appointment for Monday and hopefully they will allow me to have copies.
I am experiencing 'flu' at the moment. Lots of pain and energetic 6 year old to look after. I feel like such a useless mother when I can't do all the things he needs me to do.
Anyway, I will try to rain positive and keep up to date with this site. So helpful. Thank you.
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