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david59662
david59662

Hi, my name Is David, I am 34 years young (feel old, like 94) and prior to becoming unwell Nov 2013 I was a keen runner and triathlete for about 6 years. 3hr marathon 1hr20 5k swimathons.

So the start, Nov2013 I just started to feel 'off'. But ok I felt maybe a cold or something so I will still go to work, and train and work through it. But of course this does not work. I had been studying naturopathy whilst holding down my physical warehouse job. So felt I had adequate knowledge to fix myself because I had done this before with problems like depression and inadequate digestion. But it seemed nothing I did worked. Christmas time was utterly horrendous and I literally felt like the life was being sucked out of my body and I was dying. I had deep penetrating 'stiffness' in both legs. This lasted about 2 months before it subsided. Tests from the GP have shown up and down low neutrophils and total WBC. Iron levels are on the high side and being tested for haemocromotosis, B12 is high also. Recently WBC has achieved normal range and jumped up quite a bit but I still do not feel well. The fatigue is the most noticeable aspect, unrelenting. I eat supremely well, I juice organic vegetables, take high quality supplements and where I would advise everyone still do this with PVF I would also advise that this is not curing my condition. This seems a very deep form of damage. The energy is used to get from such things like juicing is no longer being made available, I am considering parasitic infection, as I had been swimming in Bulgaria July and also had done some open water swimming in the UK last year as well. So yesterday I did a few hours of walking but my enjoyment for life is not present, I am really suffering today, so tired. I'm staying with my father, I have no job and feel utterly useless compared to my old self. The past week I have noticed the lymph nodes in my right groin are slightly swollen, so another concern. Does anyone else get this ? I am currently seeing a reputable local TCM practitioner in the hope of a breakthrough. This condition is costing me a lot of money but I am determined it is a process of elimination, at the moment the NHS is too slow for me but the GP's have been very good but feel rushed with 10min appointments. Trust me if I find a breakthrough I will re-post. Oh, also getting poor circulation in hands and feet with the right hand always looking more coloured(red) than the left which is often pale. It is intermittent. Anyone else get this ? I'm looking for people to share experiences so I can compare. Thanks

2 likes, 52 replies

52 Replies

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  • david59662
    david59662

    Posted

    Hi mate, well I waited about 30 minutes to be seen by the first line 'medic' who took my BP and heart rate. So to him I was fine. Then waited a further one hour in a room on my own, abandoned it seemed to see a young foreign doctor who was very nice, said I should take anti-depressants. She did say It would be worthwhile being tested for lupus, given what I told her about my symptoms.
  • jacquie14742
    jacquie14742

    Posted

    David - could the heart rate / sweating thing be dysautomnia?

    http://en.wikipedia.org/wiki/Dysautonomia

    It also says linked to Lyme disease and you mentioned in another post of mine that you were positive on one of the tests...something to look into? Btw - i use epsom salts also - they are very relaxing and in beginning bathed in them twice a day, but didnt seem to help overall...

    You also mentioned you walked for 1 hour - that is great...how do you feel after this? Is there any post exertional malaise?

  • david59662
    david59662

    Posted

    Hey Jacquie, thanks. Not been tested for lyme. I can walk ok, my limit is about 2 and a half hours then I feel really low after 4pm. I am forcing myself in many ways, if it were up to the PVF I'd lie-in bed and rot away.

    The most problematic aspect of this for me is the almost constant suffocating feeling in my chest, no pain, just a feeling that something is not right. It's intensely scary as I feel at times I will be unable to speak.

  • Avocado
    Avocado

    Posted

    If you google "Heart Abnormalities in Chronic Fatigue Syndrome", you'll find that low heart rate is a common feature in CFS.

    Dysautonomia alone does not explain the problem, I'm afraid. Also CFS is a form of dysautonomia.

  • david59662
    david59662

    Posted

    And I am constantly experimenting, as insanely challenging as it is. I'm not completely out of the game.

    What I am doing now is thinking is this some metabolic disorder, hence the low energy. Any thoughts on that ?

  • david59662
    david59662

    Posted

    I don't feel drawn to the dysautonomia symptoms. But It was something i was unaware of. I'm just back from grocery shopping, one hour walk in total with half the trip carrying backpack of food, the healthiest money can afford, and look at the state of me. As i said i am investigating that i may have a metabolic disorder.
  • JerseyKaz
    JerseyKaz

    Posted

    Just a thought, with your symptoms especially at night of heart racing, sweating etc....have you had your thyroid checked? cheesygrin JK

  • david59662
    david59662

    Posted

    Yes, from GP they say fine. But I know 'fine' is not optimal.
  • jacquie14742
    jacquie14742

    Posted

    Make sure you have had the full T3 and T4 done not just the TSH...I have just had these done after everyone has been saying to push for them...im not quite on the border but my TSH was 0.8 and getting towards hyperthyroidism - so I wanted the full one to rule this out definitely smile
  • david59662
    david59662

    Posted

    What I am also noticing today having had 2 good days, is that in the morning, quite terrible, in the afternoon I can get a flare up of symptoms, like I have today, circulation in hands goes wonky, start to feel shaky. Usually about 4pm the power goes, anyone else have cycles like this ?
  • JerseyKaz
    JerseyKaz

    Posted

    I go through phases of the hands issue....suddenly going freezing cold, sometimes just one or sometimes both and sometimes just feeling like they're swollen and sometimes they are swollen! this is an issue for the past few days, along with tension headaches and tight shoulder muscles etc etc! not much power in my arms at the mo, easy to tire. I admire your 2 hour walks......I'm up to a grand total of 7 minutes! lol cheesygrin JK
  • david59662
    david59662

    Posted

    Hey Katz, well maybe because I was so fit SOME of this has carried over. I feel I could walk all day, but anything above this will kill me. I tried to open a big cardboard box this afternoon and I was exhausted.

    I have noticed improvements this week that has given me some hope. I started with the mega dosing vitamin C 20g 4 times per day spread out every 4 hours alongside medicinal mushroom supps. I can do more vitc and probably should. The kitchen sink is about to come in to this illness. The biggest problem I have is the horrible feeling I have in my chest, particularly bad at night, like my heart is so weak and will just stop beating. Do you get this ? I'm noticing panic attacks are part of the deal. This has to be a nervous system disorder quite likely encompassing the brain. Enjoying life at the moment is almost impossible. I want to but you just cannot. Your body does'nt allow it and people think it's in my head which really makes me feel very ill. I also know there are people worse than me and I just cannot think of how impossible that must be. I have lots targeted toward this illness. I am doing testing. My life savings wont last forever either and if I cannot solve this by the end of this year my life is quite fcked. Take care.

  • a8757
    a8757 david59662

    Posted

    Hello...have you researched on magnesium , niacin the one that gives the flush, lots of water intake, sea salt?
  • ev11
    ev11 david59662

    Posted

    Hi I know it was a long time ago since you posted but I was wondering how you got on with your chronic fatigue type thing as your symptoms are similar to mine??  I have tried most of the things you had and wondered if you had found anything that works?  I have just ordered that d-ribose powder and some other new supplements, as well as eating organic, healthy, yoga, meditation and lots of other things! 
    • david59662
      david59662 ev11

      Posted

      Hi Ev, unfortunately i've not found anything that has helped. But i continue to try things. Have a big list !
    • ev11
      ev11 david59662

      Posted

      Oh I'm sorry to hear that - seems I am having the same issue that I can walk but not use my upper body to do anything!  I was a gardener before this nonsense started so been so frustrating.  So you didn't find the d-ribose stuff helped at all?  I have been super healthy but about to cut out the little dairy that I have and all sugar.  Anyway I have decided to try and focus on improving my mind for the next few months and try and forget about my body for a change!!!  Well if you have any success with anything let me know...  Is difficult to try and see the positive side to all this but must persevere!!!!
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