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Mystery Illness - Exhausted

Posted , 7 users are following.

Minnie25
Minnie25

Hi! I am not sure which field of doctor that I need to see, as I am struggling with a 'mystery illness' . In a nutshell, I have had extreme exhaustion for several years, punctuated by short (hours long) spurts of energy in which I rush to get everything done, because once those hours end I have days or weeks of sleeping round the clock, feeling as if I'm walking thru quicksand, aching in my bones, with a foggy and worthless brain. In my good hours, I am quick, energetic and intelligent. I have been to several GPs and had many blood work ups done, all indicating nothing. My last bloodwork was this Feb - zip. I eat well, sleep A TON, and have eliminated as much stress from my life as I can. I AM overweight - but this has been due to eating sugar constantly to be energetic enough to make it thru my workdays for the last ten years. Last September, I quit my job and since then have stopped my sugar habit completely (since I can sleep all the time) and have already lost thirty pounds. This does not help my symptoms, however. I simply don't have to 'force thru' my days anymore. I have had depression in the past, and been put on Lexapro, which worked well while I needed it. It did not help my physical symptoms at all though. I have stopped taking it since I recovered from my depressive episode. I do not believe that I am currently depressed at all, although I do have a fairly stressful home situation - caring for a spouse with crippling major depression. I do have many problems with allergies - both external (animals, pollens, dirt, dust, etc) and food allergies (oral allergy syndrome) and intolerances. I have been helped by not eating gluten for the last three years. I am asthmatic. This brings me to now: Quite by accident, I have discovered that Claritin D (with pseudoephedrine) alleviates NEARLY ALL of my symptoms. I have taken it the last two months for spring allergies, and while I'm on it, my energy levels become normal, I think clearly and more focused, I sleep better and much, much less. I know I'm not supposed to take this indefinitely, but it WORKS. What should I do here? Thank you for your help - I really have no clue still what it is I'm struggling. I feel as if I'm fighting a dragon that I can't see.

1 like, 17 replies

17 Replies

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  • Jaybelle
    Jaybelle Minnie25

    Posted

    I feel for you! It's not easy to know what to suggest. I assume you've been tested for vitamin D deficiency, thyroid issues and adrenal problems (Addison's disease)? I don't know why psuedoephedrine would have such an effect, except that it does constrict blood vessels and raise blood pressure. Do you usually have low bp? Wishing you well(er) :-)
  • Minnie25
    Minnie25

    Posted

    Thank you! smile They've tested me for thyroid, inflammation issues, anemia, but I don't know about the adrenal glands. I don't think so. And I be never been tested for vitamin deficiencies. Should I ask for that?
    • Jaybelle
      Jaybelle Minnie25

      Posted

      I had symptoms similar to yours that went on for years. I was finally found to be severely vitamin D deficient, which sounds trivial but is no joke. It led to osteomalacia, which makes the bones become softer, causing terrible joint and muscular pain and dull aches, fatigue, brain fog, depression and muscle wasting/weakness. It has taken a year to get back to where I was before I collapsed - which wasn't all that great, but hey! 

      It's always worth having vitamin D checked out before giving up and going for an end-of-the-line junkyard 'diagnosis' of chronic fatigue or fibromyalgia. For severe fatigue, it's always worth having your adrenals checked in a blood test too. Although rare, Addison's Disease is treatable. Your previous bloods have probably rules this out, but it's worth asking your doctor about to be sure. The vit D is also a simple blood test. All best wishes :-)

    • debbie75601
      debbie75601 Jaybelle

      Posted

      I have Vitamin D deficiency. Did you have to have infusions of it, or just take tablets? I'm currently taking 4000 iIU daily, but still feeling bad  
    • Jaybelle
      Jaybelle debbie75601

      Posted

      Hi Debbie. Took at least seven months of 50,00IU/wk in tabs/capsules to bring up my levels. I began to turn a corner then, but really it has taken more than a year to get out of osteomalacia and get most of my strength back. The problems of deficiency can only be corrected in the three months quoted by GPs if you are very recently deficient. Long term shortage takes a long time to rectify and may well be complicated by other issues (in my case, Hashimoto's thyroiditis). Wishing you all the best :-)
    • debbie75601
      debbie75601 Jaybelle

      Posted

      Did you lose weight and muscle mass? I have lost a lot! What Doctor did you see that diagnosed your deficiency? My neuro diagnosed mine, but only told me to take 2000IU daily. I think I may have some malabsorption issues too, so may not be able to get the proper amounts. Seeing a rheumatologist Tuesday, since I have tested positive ANA for AI. 
    • Jaybelle
      Jaybelle debbie75601

      Posted

      Lots of muscle went. Only saw GP - wouldn't give me a referral for anyone else. Vit D problems alongside autoimmune disorders seem to be very common on here. 

      Your dose of 4000 IU daily (or 28,000/wk) seems low - general advice from NHS is that 40,000 - 60,000IU/wk is appropriate to reverse deficiency. You could be waiting a long time for recovery. Is there a reason you were prescribed such a modest dose?

    • Minnie25
      Minnie25 Jaybelle

      Posted

      I've never even heard of this!! Thank you so much for this tip, I will call my doctor on Monday. I've never gotten anywhere because I haven't been able to make anyone believe me. I'm a very happy, chipper sort of person, so they always think I'm energetic too and tell me they can't help me - just 'sleep and eat veggies'. Thank you for pointing me in an ACTUAL direction.
    • debbie75601
      debbie75601 Jaybelle

      Posted

      I have no idea, my neuro discovered it, and only said to take 2000IU. I am seeing rheumatologist Tuesday, so will ask her. Wonder if this is why I remain so sick? 
    • Jaybelle
      Jaybelle Minnie25

      Posted

      Caught the first few lines of your deleted message, Minnie. Your doctor MUST share your results with you if you ask for them - it's a patient's right. The surgery may refuse to do so over the phone and might charge you a few pence for a printout, but they must give you the results if you ask for them in person.  Good luck.  
  • Minnie25
    Minnie25

    Posted

    Oh, and normal BP. smile
  • ptolemy
    ptolemy Minnie25

    Posted

    I am really surprised that they did not test your vitamin D levels as deficiency can cause a lot of the symptoms you seem to have. Auto immune illnesses also cause extreme tiredness, but there are normally other symptoms too.
    • Minnie25
      Minnie25 ptolemy

      Posted

      I'm going to ask for this first thing on my next appointment - and yeah, I don't think it's an autoimmune disease because I'm very very healthy, outside of the allergy/asthma stuff and this one strange (but enormously life-affecting) problem. smile
    • KMRC
      KMRC Minnie25

      Posted

      Auto immune issues can happen to anyone.  I have a range of them plus migraines and cluster headaches.  I laughingly tell everyone I am perfectly healthy except for all the AI issues!  I never get sick but have constant pain and fatigue.  Am always tired but do get up to do things around the house (most of the time!) 

      a great way to get vitamin D is get in the sun for 15 minutes a day.

  • hope4cure
    hope4cure Minnie25

    Posted

    I was low in vit b-6 & b-12 shown from blood tests. After 6 months of eating better and taking B vitamins I feel much better not so exhausted. 

    Actually what u describe could be a number of things I would keep testing with your doc. It took 3 yrs before they finally listened blaming my exhaustion as everyone has that issue advising to eat better and work on less stress and better quality of sleep..

    • Minnie25
      Minnie25 hope4cure

      Posted

      I'm going to have them check my vitamin levels - several of you have mentioned that, and they never have. Thank you so much for taking the time for me. smile
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