Confused....should I insist CFS/ME is investigated

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Hi all any advice on what i should do next would be a great help as i am at a point where i'm not sure what i should do. 

 I am after some advice from people who have been through diagnosis with cfs/me as I am sure I have enough symptoms for this to be investigated further.

It all started in February this year, I was suffering with inner ear issues which spead to the eustachian tube and then to the sinuses. I was also suffering with severe left temple pain which would cause facial pain down the entire left of my face. (I was given antibiotics for sinusitis and carbamazipine for "trigeminal neuralgia"wink

 During all of this I started to suffer with crippling fatigue with muscle aches and pains, muscle spasms, constant pins and needles in hands and feet, dizzyness, tinnitus, night sweats, constant headaches/migraines and "brain fog" 

This continued until mind June when things started to ease off, i was able to return to work and pretty much carry on with a "normal" life. I was still suffering with muscle pain which was mainly in my left arm/shoulder and left leg. I was struggling to complete full days of work as my body/mind would start to shut down on me a few hours in to my shift and I was struggling through the resr of my day, I would get home and crash until the next morning and I would do it all over again.

By mid July I was feeling good at this point my main struggle was with shoulder/arm pain and left leg but was managable.

At the end of September I left work early one day as I had a horrible headache and my body was starting to ache all over. I got home and went straight to bed, 5 hours later I woke up and couldn't move. From head to toe everything ached. It was like I had the flu but I didn't. This lasted for 4 days solid then started to ease but I had been left with this crippling fatigue and muscle aches, pain and spasms, hot one minute cold the next, frezzing cold hands and feet and brain fog. This lasted for around 2 weeks then slowly started to ease so I returned to work but this time we ensured that i was working at a slower pace, working on one task at a time and taking a small rest break every now and then and getting other team members to take some of my workkload away from me which has been helping with the way I am feeling.

Now I am waking up in the morning with just the usual sleepy feel rather than waking like I haven't even been to sleep. My body is so much looser so I am able to move normally and not feeling so stiff and in pain when I try to move, I am getting home from work most days just feeling a little drained rather than feeling like I need to collapse in bed.

I am working so much on relaxing and spreading my work load and getting plenty of rest during the day and eveings and just taking it easy over the weekend to try to stop the whole thing starting again but I do worry that this is going to happen again and If this does I need something diagnosed and not just told there is nothing coming from tests so just to rest.

My DR has mentioned CBT but no diagnosis of cfs/me. I discussed the exercises I am doing at work am he says it is a good idea if this helps but I really need to know if cfs/me is what we are looking at as nothing is coming up from tests i have had done.

I need to start pushing my dr but not sure how to handle this, can I ask for a referral to a cfs/me specialist to see if they can diagnose me or do i need to be diagnosed before i can be referred? How could I handle this now so that I can get some diagnosis as I am worried work will not be so helpful for much longer without a diagnoses.

I have had all blood tests done which are all clear, I have had an ECG which was all clear and a neurological examination which shows there are no issues with my nerves. I did have a ct scan of my sinuses which does show blockages in my sinuses which I may need to have an op on but that is all that has shown up so far. 

Thank you for taking the time to read my story, i have tried to keep it short but there is a lot of things to tell to get your advice. I need to keep pushing this even though things have eased now as if I leave it then this happens again it is like we start all the way back at the beggining again. (Sorry if I ramble a bit as my head is a little foggy today :-( )

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  • Posted

    When everything from tests is clear that rules out other things and then they investigate ME. You have a lot of the symptoms that myself and other ME sufferers have so I'd definitely keep going with getting a diagnosis if I were you.

    I get sinus problems but I think with me it's down to dust mites; may not be though.

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    • Posted

      Thank you for your advice. I worry that the dr will end up putting it down to anxiety and depression as when I was first referred to the ent I was discharged after some questioning with an anxiety disorder.

      The 2nd visit to a different ent where they actually investigated it and there was a problem with my maxillary sinus. I just don't want to be fobbed off again.

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    • Posted

      You won't get fobbed off again because you won't let them do that this time! You know more. Many of us have been fobbed off. I was told I was depressed and offered Prozac even though I kept saying 'I'm not depressed!'.

      I went through a handful of doctors until I found the understanding one I have now. Many people have had to do that.

      All the best with it!

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    • Posted

      Haha. I love how you put it but you're right I'm not letting them fob me off again.

      I am so bad at just putting my foot down and sticking my ground when I'm with Dr's. I guess I'm used to going in and just accepting what they say but as this has just gone on and on without getting any clear understanding of what the dr thinks it is and I'm starting to lose patience now.

      Because the ENT fobbed me off then it was proven that he was wrong I just can't let that happen again so I want as much reassurance and information as possible.

      My problem is that I have been on antidepressants for awhile because I was going through a bad time around 4 years ago but as soon as they see that I've had them that is where the conversation goes everytime and I'm getting sick of it as I know when I'm down and usually I know what has caused it. The only time I feel down now is when I feel like the Dr's are not helping but I guess a lot of people know what that's like.

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    • Posted

      Doctors have made me more furious than depressed but I know what you mean.

      I've been on antidepressants in the past and I don't know if that's one of the reasons a doctor kept insisting that depression was causing my symptoms but I've heard this from so many people. They feel they have to make a diacnosis and they know nothing about ME so they go for the easiest thing, a mood disorder.

      And apparently depression can cause tiredness so they link it together. It's sloppy and in my opinion neglegent. I even asked if I could have ME and a doctor and nurse both said 'No because your test results are clear'. That how ignorant they were! eek

      You know a good place to ask if there are any doctors who're understanding about ME is pharmacies. A pharmacist is the one who told me about the good doctor I have now. 

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  • Posted

    While there is no test for CFS yet, if your GP has exhausted everything else with tests - Vit D/B12/testosterone/thyroid etc etc - then insist on being referred to a consultant at the hospital. From there you might then be able to be sent to a specialist treatment centre or at least get more targeted help.

    At least your GP is talking CBT - mine just mentions anti depressants (which I keep refusing). I'm hopefully being sent to the specialist centre soon, if they accept me so the GP can just dish out sick notes.

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    • Posted

      Thank you for taking the time to read my essay and reply.

      From what the dr says he has now ruled out everything from blood test. The first blood test back in March showed a slightly lower reading of b12 and folic acid but that has not raised concerns since. I just had another test for thyroid and that is all fine.

      I wasn't sure whether to accept cbt as I'm not sure if this is being offered for depression or something else. Would you recommend me taking up the offer of cbt?

      Maybe I could ask for a specialist referral first just to get the ball moving in the direction of getting a diagnosis.

      Good luck with your treatment as I know how difficult this is to get them to accept what you are saying.

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    • Posted

      I would certainly push for a specialist referral first. Unless the CCG has already stopped funding consultant referrals for this (my local one did just after I got one!). In which case its for your GP to say, 1 way or another, "yes I think its CFS.

      The 2 NICE approved "treatments" are CBT and GET (graded exercise therapy, which has a lot of controversy around it). CBT as I said the other day on another thread can help you think about things differently - put you in a more positive mind set. If you think you need it. Better than taking anti depressants but then its not just for depressed people either.

      I did it last year for IBS related issues before my CFS got bad and was diagnosed. It has enabled me to retain a positive outlook and not feel sorry for myself - if anyone stays negative, they won't get better, in my view. I'm not happy clappy every day - if I have a setback obviously it puts me down. But then I bounce back quickly and don't stay down and thinking "poor me". That's the easy option.

      But CBT will only treat the mental side - its not a cure for CFS on its own (there is no cure - all most can hope for is to put it in remission and cope when it flares up).

      You know how your state of mind is and whether you think you might benefit from it. It would probably help you as regards work - if they know you're doing what your GP suggests (and as I say, CBT is a recognised treatment) then that would keep them on your side and being supportive hopefully, should you relapse.

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    • Posted

      If you're in the UK, there's a real push to 'manage' 'medically unexplained symptoms (MUS)' in ways that avoid costly investigations, and instead encourage patients to alter how they respond to these sensations.

      The evidence used to support this politicised approach is pretty questionable.

      Some recent articles on this that could be of interest if you were to google them:

      'Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back'

      'The results they really didn’t want you to see: key ME/CFS trial data released'

      'Worse Than the Disease'

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    • Posted

      Thank you again.

      I understand how cbt is used for cfs/me as I have started to read up a lot more about this since he said about a possible referral and I think work would like me to take his advice but I don't want to go straight to that until I have had the chance to discuss possible cfs/me with someone who is going to openly discuss this with me and I'm just not sure if this is what my current dr is going to do.

      I think I am going to find out if there is a chance of a specialist referral or another Dr at my surgery who has a better understanding.

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  • Posted

    I would start by checking out the criteria for ME/CFS. You have a lot of the symptoms but your symptoms could also be something else entirely. There are a couple of key sypmtoms that generally tell you if you have ME, one of them being PEM (Post Extertinal Malaise), as opposed to post viral fatigue or something else.

    PEM can be tricky to pinpoint and you will need to research a bit and then listen to your body to see what is happening. If you feel you fit the criteria then print it off and take it to your doctor and see what they say. Some are really good, some are plain awful and won't believe in ME (the fact that they have already mentioned CBT is a worrying sign).

    If you do get reffered you will go through some stuff and then get offered CBT and GET as treatment which is, frankly, a joke. It is all the NHS will offer you though if you are in the UK. The key thing is to go through the gumf at the ME clinic or wherever to get the diagnosis.

    It's your call but if you get a disgnosis for ME and it is what you feel you have ignore CBT and GET and do as much research as you can about what others have found helpful. You will need to think about a lifestyle change in some way as if its ME it will be around for some time.

    For ME, exercise is about the worst thing you can do. Rest is best imho.

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    • Posted

      Thank you bob1970 for your advice.

      PEM is something I feel started my last bout off as I had a pretty stressful and non stop day at work on the Saturday. I was fine Sunday and Monday morning is when it started to hit me.

      I have been told by my manager on numerous occasions to slowork down and to offload some of my work on my team but I always fall back in to the old me once I recover.

      It is good advice that you gave to print off information and take it along so I can discuss symptoms that comes with cfs/me and relate them to the symptoms I have been experiencing.

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  • Posted

    It's difficult to understand why your doctor is advising CBT when you haven't even yet got a diagnosis ! ..

    The first thing I'd do is to change your doctor, you need someone who is going to diagnose and treat you and not just fob you off with a view to saving the NHS money on clinical tests..

    CBT can be useful to help with handling the condition, if it's ME/CFS, but it's not a cure and before anything else you need a proper diagnosis and then advice from an ME specialist, or at least someone who knows what having the condition means.

    You may have to make even bigger lifestyle changes to help you get the condition under control, it's far too easy to get into the cycle of "boom and bust" and you need to so everything you can to improve, it's a beast of a thing and you can't fight it by railing against it.

    Best of luck and keep in touch, it is possible to get a lot better than you have been and there are health professionals out there who know what they are talking about, though it can be difficult to find them, your best idea may be to let us know where you live and then anybody close to you may be able to help you with a doctor who can help...  smile

     

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    • Posted

      Thank you for your advice.

      I too have been wondering why a cbt referral has been discussed before any diagnosis and that is one of the things that has prompted me to start thinking about the way this whole thing is being handled.

      I may need to change dr but I think I will try to raise this with him again and see what he says then decide whether to change or not.

      I will definitely keep in touch as I am getting so much good advice here and it is giving me good points to raise.

      I am living in Didcot, Oxfordshire in the UK so yes if there is anyone who can advise on good drs nearby that could be a big help.

      Thanks again

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    • Posted

      There's an article in the ME assocication about CBT and it says that some practitioners try to convince ME sufferers that their believe system is maintaining the illness, which is utter rubbish.

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    • Posted

      I have the feeling that may be what my dr is thinking hence the reason for offering cbt without no diagnosis 😣

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    • Posted

      In much the same way that some (like mine) try to throw anti depressants at you. But there's no doubt a positive outlook helps you manage and deal with the way you are - but when there are real physical symptoms obviously thinking positively won't solve those alone.

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    • Posted

      Yes, it's like they want it to be all in the mind because they can deal with that; it's admitting that it's a physical disease that scares them because they don't know what to do about it.

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    • Posted

      In a way thinking positively does help me with my symptoms because I never stop trying things out to see if they'll help because I'm hopeful of recovery. And I've discovered lots of things that do help, like Homeopathy, Herbalism, diet, certain supplements etc.

      If I was negative I wouldn't be searching so hard for a cure. razz

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