Perplexe....devrais-je insister pour que le CFS/ME soit investigué

Cerveau et nerfs
1

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 :-( )

2

Lorsque tout est clair dans les tests, cela écarte d'autres choses et ensuite ils enquêtent sur le ME. Vous avez beaucoup de symptômes que moi-même et d'autres personnes atteintes de ME avons, donc je vous conseille définitivement de continuer à obtenir un diagnostic si j'étais vous.

J'ai des problèmes de sinus, mais je pense que chez moi, c'est dû aux acariens de la poussière ; ce n'est peut-être pas le cas.

3

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.

4

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.

5

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.

6

Je commencerais par vérifier les critères du ME/SFC. Vous avez beaucoup de symptômes, mais vos symptômes pourraient aussi être autre chose. Il y a quelques symptômes clés qui indiquent généralement si vous avez le ME, l'un d'eux étant le PEM (Post-Exertional Malaise), par opposition à la fatigue post-virale ou autre chose.

Le PEM peut être difficile à identifier et vous devrez faire quelques recherches puis écouter votre corps pour voir ce qui se passe. Si vous pensez correspondre aux critères, imprimez-les et emmenez-les à votre médecin pour voir ce qu'il en dit. Certains sont vraiment bons, d'autres sont franchement horribles et ne croient pas au ME (le fait qu'ils aient déjà mentionné la TCC est un signe inquiétant).

Si vous êtes orienté vers un spécialiste, vous passerez par certaines étapes, puis on vous proposera une TCC et une GET comme traitement, ce qui est, franchement, une blague. C'est tout ce que le NHS vous offrira si vous êtes au Royaume-Uni. L'essentiel est de passer par les formalités à la clinique du ME ou ailleurs pour obtenir le diagnostic.

C'est à vous de décider, mais si vous obtenez un diagnostic de ME et que vous pensez que c'est ce que vous avez, ignorez la TCC et la GET et faites autant de recherches que possible sur ce que les autres ont trouvé utile. Vous devrez penser à un changement de mode de vie d'une certaine manière, car si c'est le ME, il sera là pour un certain temps.

Pour le ME, l'exercice est probablement la pire chose que vous puissiez faire. Le repos est ce qu'il y a de mieux à mon avis.

7

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.

8

Si vous êtes au Royaume-Uni, il y a une véritable volonté de « gérer » les « symptômes médicalement inexpliqués (MUS) » de manière à éviter des investigations coûteuses, et à encourager plutôt les patients à modifier leur réponse à ces sensations.

Les preuves utilisées pour soutenir cette approche politisée sont assez discutables.

Quelques articles récents sur ce sujet qui pourraient vous intéresser si vous les recherchiez :

« La mauvaise science a induit en erreur des millions de personnes atteintes du syndrome de fatigue chronique. Voici comment nous nous sommes battus »

« Les résultats qu'ils ne voulaient vraiment pas que vous voyiez : les données clés de l'essai ME/CFS publiées »

« Pire que la maladie »

9

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... 

 

10

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.

11

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.

12

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

13

Vous ne vous ferez plus berner parce que vous ne les laisserez pas faire cette fois-ci ! Vous en savez plus. Beaucoup d'entre nous avons été bernés. On m'a dit que j'étais déprimé et on m'a proposé du Prozac même si je n'arrêtais pas de dire « Je ne suis pas déprimé ! ».

J'ai consulté plusieurs médecins avant de trouver celui compréhensif que j'ai maintenant. Beaucoup de gens ont dû faire cela.

Toute la meilleure chance avec cela !

14

Il y a un article dans l'association ME qui parle de la TCC et qui dit que certains praticiens essaient de convaincre les personnes atteintes du ME que leur système de croyances maintient la maladie, ce qui est complètement absurde.

15

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.

16

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

17

Les médecins m'ont rendu plus furieux que déprimé, mais je comprends ce que vous voulez dire.

J'ai déjà pris des antidépresseurs dans le passé et je ne sais pas si c'est l'une des raisons pour lesquelles un médecin insistait pour dire que la dépression était à l'origine de mes symptômes, mais j'ai entendu cela de la part de tant de personnes. Ils ont l'impression de devoir poser un diagnostic et ils ne savent rien sur l'EM, alors ils optent pour la solution la plus facile, un trouble de l'humeur.

Et apparemment, la dépression peut provoquer de la fatigue, alors ils font le lien. C'est bâclé et, à mon avis, négligent. J'ai même demandé si je pouvais avoir l'EM et un médecin et une infirmière ont tous deux répondu « Non, parce que vos résultats de test sont clairs ». C'est à quel point ils étaient ignorants ! 

Vous savez, un bon endroit pour demander s'il y a des médecins qui comprennent l'EM, ce sont les pharmacies. C'est un pharmacien qui m'a parlé du bon médecin que j'ai maintenant. 

18

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.

19

Oui, c'est comme s'ils voulaient que tout soit dans la tête parce qu'ils peuvent gérer cela ; c'est admettre que c'est une maladie physique qui les effraie parce qu'ils ne savent pas quoi faire.

20

D'une certaine manière, penser positivement m'aide avec mes symptômes car je n'arrête jamais d'essayer des choses pour voir si elles aideront, car j'ai de l'espoir en la guérison. Et j'ai découvert beaucoup de choses qui aident, comme l'homéopathie, l'herboristerie, le régime alimentaire, certains compléments alimentaires, etc.

Si j'étais négatif, je ne chercherais pas si fort un remède. razz