CFSGEORGE - a question for you

Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Jun 26, 2009.

  1. Bunchy

    Bunchy New Member

    Would you mind (as an ex primary care physician) telling me how I can explain sensory overload (sensitivity to chemicals, people chatting around me, loud noise and light) to my doctor (UK doctor so not very understanding of these DD's)?

    Also how can I explain to her that heat causes me to have severe neuropathic pain all over and stomach upset and then I feel a whole lot worse with body buzzing, pressure sensations inside etc?

    I don't know how to explain these things in a way a UK doctor would understand.

    Also in the UK many doctors think these things are all in our heads and just want us to have GET and CBT - this is not helpful for me but again, I don't know how we can get doctors to understand that CBT and GET aren't helpful for the above symptoms.

    Finally what is your opinion on CBT and GET?

    Sorry for all the questions but I'd appreciate it if you could answer briefly if and when you are up to it :)


    Love Bunchy x
  2. cfsgeorge

    cfsgeorge New Member

    Bunchy-all primary care physicians and internist around the world knows what sensory overload, neuropathic pain, orthostatic intolerance, NMH, POTS, cognitive problems, PEM, etc, are even if they know nothing about CFS/ME/FM. If you already know these terms than it makes it easier to communicate with your doctor. And it makes it easier for your docs to understand your symptoms, to help figure out what questions to ask you, what exams to perform, and what treatments to give. You just need to tell them what you told me in laymens term just like talking to your mom or dad. They will understand you and put it together so they can decide on how to treat your particular symptoms.

    Tell them you have sensory overload and that is really bothering you. Tell them what bothers you are noise, chemicals, light, etc which leads to what for you? anxiety, insomnia???. They may advise advoidance, meds, and practical solutions like ear plugs and sunglasses. If you want to get to the the cause of this, then you'll probably be referred to a neurologist.

    Tell them you have severe neuropathic pain and tell them your severity, symptoms, and aggravating factors like heat.

    Doctors are looking for "what helped, what doesn't , what makes it worse, severity of pain(0-10), where, type of pain (sharp, dull, deep achy, radiating, burning, etc), progression, how often, temporal, etc. so they can assess your individual case to treat the symptoms appropriately.

    Don't worry so much, just calm down and explain it as simply as you can. he/she will understand you. None of these terms or symptoms are restricted to CFS/FM so all doctors know them already. Just trust them and convey to them your problems calmly so they can understand you. Have trust in your doctor. They are very rational and smart people.

    However, if the problem is with your doc not believing you or CFS/ME by dismissing your symptoms without another diagnosis, then you have to get another doctor preferably a CFS/ME specialist like Dr Myhill. i've had to do this several times and still looking! It is not your problem to convince a doctor that CFS/ME is real. That's his/her problem not yours. And if you're feed up with teaching your doctor about CFS/ME it may be time as well to move on to a doctor who can teach YOU about CFS/ME.

    CBT can be helpful as it helps PWC cope with this DD by helping to uncover and to avoid activities that can trigger a crash. However, it is not a primary treatment nor does it cure in any way. CBT is a supplemental treatment for all chronic illness both disabling and life-threatening. Some find it helpful while others do not. It is just a way for you to cope with this DD better. It can be used for people with advanced heart disease,MS, Parkinson's, AIDS, paralysis, mental illness, and cancer. CBT can even be applied to help family and friends to better understand this DD. I think CBT may be best used for those UK doctors/psychiatrist who refuse to believe CFS/ME is an organic disease =) There are +4000 studies that prove CFS/ME is an organic disease. There's no denying it today. Give your "bad" doc a script for CBT! lol. hahaha!

    I stopped all aerobic and anaerobic exercises when i kept PEM/DPEM at the very beginning of my CFS(unbeenknowst to me). However an Acupuncturist had me do GET under his insistance and i was eventually hurt by GET everytime i attempted a 10min walk resulting in a "crash" or PEM/DPEM afterwards which left me bedridden for 3-4 days at a time. I did GET for 2months straight before i stopped it myself explaining to my doc that i will never get well if i keep crashing from these 10min walks week after week and month after month. I was pushed by my acupuncturist to do it as often as i could which was 2X/week. He was afraid of de-conditioning but i told him that is really secondary to getting me well from CFS. I had to "get it" because it hurt me so much while he "didn't get it" since it did not hurt him.

    From studies, GET helped about 20% of PWC, no change for about 40%, and worsened about 40%. I think this was about the same numbers for A/D's in another study but that's a different story. Who knows if everyone in these studies had CFS/ME or at what stage? It is definitely not a cure nor an effective primary treatment for CFS/ME because it hurts more than it helps overall. Read "Defeat Chronic Fatigue Syndrome" by Martha Kilcoyne who offers practical advice on when to start exercise/GET.

    There is no need to do GET when you are in the severe or acute stages as it will just make u worse. It's like telling someone who just had a heart transplant or who contracted mononucleosis to start GET. They will never recover and will make them sicker than ever. But there will be a time when GET will be helpful to them once time has passed and they are better recovered. This is really just common sense we all seem to overlook. Too bad so many of us have to suffer so much before we realize it. PWC usually know when drugs and therapies like GET is hurting us before the treating physician knows since we are the ones being hurt!

    I hope what i said is somewhat helpful to you bunchy. Personally, i am in a struggle with doctors myself. I am working with a wonderful internist and cardiologist who knows nothing about CFS/ME but he is the only one who listens and has not hurt me. Yet, i am still compelled to find the perfect CFS/ME doc as i am at a plateau now and not getting any better. I hope we will both find the right doctor soon! good luck to you and take care!

  3. AuntTammie

    AuntTammie New Member

    I know what PEM is, but what's DPEM?
  4. cfsgeorge

    cfsgeorge New Member

    Delayed PEM is PEM(crash) occuring 24hours or more after minimal physical exertion such as walking.

    For example, i can only walk up to 20min on a good day without crashing. But if i extend that to a 25 or 30minute walk, i will crash the next day(DPEM) not right after(PEM). And if i JOG for 20min, i will immediately PEM(crash) afterwards not having to wait for the delay the next day.

    It's taken me a year to figure this out but its all there in the articles and books.

  5. Bunchy

    Bunchy New Member

    I'm so sorry it's taken so long for me to reply :(

    It's been terribly hot here and I get severe neuropathic pain all over and in my stomach/internal buzzing and what feels like internal pressure and severe stomach upset when I overheat (any idea what causes that BTW??)

    It's hard in the UK as if you mention "sensory overload" to a doctor they do actually think you are mad :(

    I understand that it is best to use brief and accurate descriptions of symptoms but sometimes - for example what I describe above happening to me when I overheat - this just isn't possible and/or it's difficult to put the physical feelings into words.

    I have been for extensive investigations over the years and nothing "significant" has been revealed.

    The only things that have been found are a liver granuloma (doctor said was old scar tissue), a lesion in the T8 region of my back on and MRI scan (neurologist said insignificant), a weak positive anti-smooth muscle antibody (again consultant said insignificant) and more recently high sed rate, weak positive ANA and high RF (no other signs of Arthritis or Lupus so was again told insignificant even though these have been the same results for several years now)

    It's hard especially as benzodiazepines are the only type of drug that helps (I believe because my CNS is super sensitised causing most of my symptoms and they calm it down) but I am scared of not being able to get these in future because of the stigma attached to them here in the UK. (I rotate several different ones to keep them effective and save a few for times I need them more eg when I have overheated).

    I wonder what more I can do?

    Love Bunchy x

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