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how do I get my doc to understand

Posted , 8 users are following.

agentdove
agentdove

I have been suffering with the symptoms of CFS and been trying to tell my GP for ages but they just will not listen. I am now sleeping all the time, rarely leaving the house and in lots of pain. How can I get them to understand and listen?

0 likes, 11 replies

11 Replies

  • dawn97
    dawn97 agentdove

    Posted

    Hi there , my advise to you is tell your dr you want to be referred to a rheumatologis
  • dawn97
    dawn97 agentdove

    Posted

    Hi there it's up to you to demand a referral to a rhymatologist , I know it's not nice to go into a drs and tell them THIER job but sometimes it's what's needed ! You are not getting the right  help I think he who shouts loudest gets herd !!!!!! Good luck !
  • Abbyleanne86
    Abbyleanne86 agentdove

    Posted

    I'm sorry to hear you're in so much pain and struggling. I was exactly the same 2 weeks ago and I haven't been diagnosed with CFS as of yet (you have no doubt read it isn't easily diagnosed).  I would demand having your blood tested if you haven't already. After having my blood tested I found out that my vitamin d levels were extremely low.  I am now on high strength supplements for a month to see whether this improves the symptoms. So far I feel pretty much the same, but I have only been on them for 5 days. It's literally a case of eliminating every other possible condition which isn't fun and can take a long time, but keep persevering with your doctor! If that fails can you not ask to see another doctor? 
  • peter01102
    peter01102 agentdove

    Posted

    u have the right to tell ur doctor and ask for blood tests , note cfs and blood test lucky if any think is on them.

    most doctors will tell u get a bit more sun . or get out more .

    alsio ur doctor is there for u and not to sit on his/her bottom. ask.

    see other doctor  were urs is based mine as 7 doctors in were mine is based.

    took 3rd to take me for tests etc so ask smile ...

     

  • smj1523
    smj1523 agentdove

    Posted

    Hi There, we were lucky our GP did a whole series of blood tests and everything came back negative but the fact that my teen had had a virus originally seem to push the Doctor to contact the Consultant plus the fact that we were at the sugery every other day. My teen was admitted to hospital and things went from there. Be pushy and firm and ask for a referral or to see another GP. I've found that getting the diagnoses is only the start, looking for remedies to help is proving the tricky bit. Good luck, its taken us months so don't give up too soon.
  • jackie00198
    jackie00198 agentdove

    Posted

    This is such a common problem. When I became ill, my GP told me I just needed a vacation. (In other words, it was all in my head.) This is a very common, ignorant reaction. I immediately went to UCLA, and was diagnosed within 20 minutes. I thought CFS (ME) was more accepted as a diagnosis in the UK (assuming you live there) than in the U.S. In any case, rather than wasting your time trying to deal with an ineffective GP, can you find another doctor that has treated CFS patients? There are resources online to help you find such a doctor.
  • mark57938
    mark57938 agentdove

    Posted

    Ok this is a serious thing, but only because finding the right path to recovery isn't really through your GP, so finding ways forward is challenging and takes time. Really you have to do this yourself, because you probably look fine and sound fine, and it is only within yourself that it is clear there is a problem). Everyone is a little different, but this is my story.

    I had a virus in Sept 2013, and as a result CFS/PVF set in. GP was nice and gave me doctor notes explaining to my work that I needed rest, but this didn't help me recover and feel more energetic. I was initially very tired just trying to go to the shops, however over time I was determined to go back to work, but I felt there was a point each day I couldn't get beyond. And all I could do was work. Get to work and then get home to recover from work. I took lots of vitamins, B complexes, 1000mg of Vit C, stopped drinking caffine, and ate REALLY nutritious meals. But it only got me so far. It was almost like part of my energy system had stopped functioning. I was into lots of things, and trying everything, and after 4 months I went to a homoepath. This was key.

    Working with her I was able to share thoughts on how my body was responding to certain things, and we agreed on the idea that I had been burning the candle at both ends too much prior to falling ill, and when I fell ill with the virus my immune system hadn't been properly able to deal with it. And it had panicked and traumered. (Basically re-wiring itself to be dealing with an emergency). In my case(which apparently is very common), my adrenaline was worn out and my body had stopped using it.

    So to fully beat this illness you have to deal with the fact that the body is sending the wrong types of signals to deal with certain scenarios. An example of this is that at the beginning of the problem, when I missed a meal and became hungry, my body mistook hunger for a sign that I was running out of energy, and panicked and made me very tired, so I would rest and stop using the last bit of energy it thought I had.

    I went to the homoepath in Dec, I was then able to do my first 'evening activity' after work in late Jan. I started running in Feb (this is key, you need to exercise to help the recovery) and started playing football again in March. I played a full match two weeks ago. I know it will take me more time, but here's what you need to do:

    Stage 1: Accept that this is a deep rooted issue that will not be solved overnight. If you have CFS you have knocked your body processes and most likley your immune system out of balance. And those who depend on you must accept this too. If you try to do too much you will not recover properly. You have to physically recover from the incident which caused it, and then 'pace' yourself back into doing the things you want to do. Simple smile

    Stage 2: Rebuild immune system. If you don't focus on this you won't get past a certain point. Each day I take a pro-biotic (Bio-Kalt) to help with digestion, a sports vitamin for the nutriants, a vit C 1000mg (because it is vit c that transports all good things around the body), magnesium in liquid form ('Liquimins' - it is basically food for the cells in your immune system), and zinc in liquid form. (Magnesium, zinc and Vit C basically are your immune system - if you have these you're halfway there).

    I also take some homeopathic remedies that are particular to me. I take two adrenal suppliments, so support my adrenelin.

    And SUMA (i found this one myself and I know it has been super effective). Suma root powder (available online from herbal shops). I heard this had been used to treat chronic fatigue. So i got some and heated it in a pan of water. Having a mug per day. After about two days it changed my recovery. It has been used in many cultures older than ours to re-align bodily functions and hormones. If you have CFS you have knocked your bodies processes out of line, this will encourgae re-alignment. For me, it got my adrenaline gland and immune system talking to each other again.

    Stage 3: You must keep expanding your horizons (but at your own pace). I've been through the cycle of not wanting to leave the house. Thinking that if I do this I will feel really ill for the rest of the day. When I first went running I slowly jogged for 100 metres, and I had the entire weekend afterwards to recover and see what would happen. 3 months later and I am playing 45 minutes of football and feel really fine. (Maybe a little tired the next day, but I structure my day so I don't have a long day on my feet the day after).

    And you must push yourself a little through the pain barrier. Just do it gradually, walk 100m further, stand for 10 mins longer. And give yourself time to recover after. It's really important to exercise as this gets the body functioning fully. It also helps the body to burn up stress. For me keeping stress levels low has helpded.

    I went on some forums when I first felt ill and it was all doom and gloom, with frustrated people who'd been ill for a long time. For the NHS people with this condition aren't a priority. You really have to take responsibility for your recovery. I am having a mug of hot suma with my lunch whilst I write this, and then I'm going out for a bike ride. 4 months ago I was struggling terribly and thought that wasn't possible! smile

    • smj1523
      smj1523 mark57938

      Posted

       Hi Mark, have just printed off your reply and given it to my teen as a booster and a very positive outlook for them. My teen is definately better when they take the herbal remedies and vits i have researched but we still haven't managed to get on top of the headaches but will try feverfew as suggested on this forum. Some of the forums my teen has been on have definately not helped, in fact they have made things worse. We have discovered that this condition is unique to the individual and what symptoms one person has another will not or the degree at which they get those symptoms is very different. My teen ending up thinking they were going to end up in a wheel chair or on anti depressants like the person they had been chatting too. Our consultant warned us that some forums needed to be monitored by me and now i know why! Thanks for your story and advice. This is the kind of information i have been looking for as a way forward to help my teen on the road to recovery. Positive info is what is needed.
    • mark57938
      mark57938 smj1523

      Posted

      Hi SMJ, great to hear! Staying positive is fundamental. I'd never heard of this before last year, but following diagnosis have since found 4 friends who have been through varying degrees of problems ranging from 3 months suffering CFS to 2 and a half years full blown ME. 4 months ago I didn't think i would play football again. Ever. Now I am going on tour with the team this summer. Although I am not the same person, I don't fill my week as I used to, and I generally stop at 3 alcoholic drinks.

      But someone told me at Christmas that it was only once they fully accepted the condition that they started to recover. The scientific side of this is potentially that once you accept it, you stop (even subconciously) stressing about it (creating cortisol within your body). Then your immune system doesn't have to spend it's resources fighting all the cortisol (stress) and it can concentrate on rebuilding. But you have to lower your horizons and let the world go on without you for a bit. I'm not great at relaxing, so I bought a little Nintendo DS so I could do something challenging whilst relaxing at the same time. Your teen may already have something like this. Encourage it!! smile

    • jackie00198
      jackie00198 mark57938

      Posted

      Wow! What a wonderful and detailed explanation of your path to recovery. It is truly an inspiration. I'm saving it and will look into your regimen.
    • JerseyKaz
      JerseyKaz smj1523

      Posted

      HI SMJ, i have cfs too and suffer with periods of headaches. They are the tension variety due to increased tighteness in the neck and shoulder muscles..this is quite common in cfs. I find very warm baths and deep tissue sports massage helps hugely. If you find a good sports massage therapist, they will customise the massage to suit where you are most tense and use as much pressure as is comfortable. They shouls also show you some good stretching exercises to do at home to help relieve tension before a headache has the chance to build up. good luck cheesygrinJK
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