Undiagnosed fatigue

Gary1999
Gary1999 Community member Posts: 15 Listener
in Rare, invisible, and undiagnosed conditions

Hello All,

Wanted to try and get some advice/guidance. For past 9 months have suffered with extreme fatigue. No disturbed sleep at night but wake up unrefreshed and struggling to do basic tasks without then laying on couch. Doctor has run various blood tests, x-ray and CT scan which hasn't identified why I feel so lethargic all the time. Don't feel depressed just shattered most of the day. No weight loss. Been type 1 diabetic for 40+ years and also under active thyroid. Blood tests on these 2 conditions show OK on these fronts. Getting worried as feel each day I'm getting a little worse. Doctor has requested further blood test for vitamin D although feel that's not the cause of feeling this fatigued. Also for last 12 months have developed beau lines on my thumb nails. Developed raynaud's syndrome in hands about 18 months ago and shingles just over a year ago. Not sure what to do and just seeking advice as to possible further tests that might explain this constant fatigue. Thank you for your time. Kind regards Gary

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Comments

  • vikki66
    vikki66 Community member Posts: 765 Empowering

    Hi Gary, sorry to hear about this.

    Obviously I’m not qualified, so am only speaking from experience - have they tested your kidney function?
    Please don’t be worried, I’m only asking.

    Take Care

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Hello and thank you for reply. Tests show kidney and liver function is good. Never felt like this for so long. Worried as beau lines roughly appeared when I started to feel fatigued, approx 9 months ago.

  • vikki66
    vikki66 Community member Posts: 765 Empowering

    Glad kidney and liver ok.

    Heart? Vascular system? Have you had any testing there?

    I’m trying to remember the progression of symptoms with my partner (who similarly type 1 since early childhood, so 40+ years). I’ll ask him later and see if he can offer anything from his journey. I’ve got something tonight, so it might be tomorrow before I get an answer.

    Hopefully somebody else will come along in the meantime who has experience.

    Hope you have a good day.

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Thanks for reply Vikki. Heart and blood pressure all fine. Appreciate comments re. Your partner to see if they experienced anything similar in the past. Hope to get my vitamin D blood test early next week just to check that's OK but struggling to see it could be thar. Thanks again for your reply, much appreciated.

  • vikki66
    vikki66 Community member Posts: 765 Empowering

    I know he experienced it, but I can’t remember exactly why, or if he didn’t get an answer, but something else came up later which might’ve explained it. I’m trying to remember what age my son was when his dad started struggling to have the energy to walk, my memory’s not what it was after going into perimenopause.

  • Nashota
    Nashota Community member Posts: 210 Empowering
    edited October 5

    What about ME/CFS, fibromyalgia?

    I was diagnosed with FM and that causes me to have fatigue often, some days I doze off where I sit, I also have the lines that you've mentioned on my nails, but I have no idea what it's related to.

    I hope you find the answer.

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Thanks Vikki. Appreciate your comments and look forward to hearing from you once you've discussed with your partner. Have a good day Gary

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Thanks for your reply Nastota. Doctor has not mentioned ME/CFS. I suppose they're trying to rule out other possible causes. Doesn't appear straight forward to diagnose ME, I'm hoping it's not the cause as it sounds like a living he'll. Thank you. I'll mention it to my doctor.

  • luvpink
    luvpink Community member Posts: 368 Empowering

    @Gary1999

    I am experiencing similar fatigue symptoms that have gradually got much worse since January time.

    I can barely raise from my sofa most of the time.

    I am diagnosed with fibromyalgia and cfs but this worsening fatigue is on another level and I am exhausted.

    Blood tests showed vit' d and vit' b12 deficiencies and I have been taking supplements that haven't made an ounce of difference.

    I have an appointment next week for more blood tests.

    Do you think you may have long covid perhaps if you ever had covid?

    I had two covid jabs and I swear this could have contributed to my fatigue.

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Hu Luvpink,

    Thanks for your reply. My B12 level was high on last blood test. Vitamin D testing next week. Had covid jabs and probably caught covid at some point, but this recent constant fatigue probably last 9 months. I'll have to check what ME symptons possibly accompany the main symptom of fatigue as nothing else comes to mind. I hope it's not ME as don't want to feel like this for any length of time. Thanks very much for your reply.

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Morning Vikki,

    Just wondering if you've had a chance to discuss with your partner re. Similar symptons to my current issues. Thank you Gary

  • longtallsally67
    longtallsally67 Community member Posts: 39 Connected

    Hi Gary

    I can see this has already been mentioned but I came to reply the same, sounds to me like it could be Cfs/fibromyalgia. I got diagnosed with CFS at 19 and fibromyalgia a few years ago. I’d press and push for the GP to refer you to a rheumatologist at the hospital, I’m still under mine and see her every 3/6 months.

  • longtallsally67
    longtallsally67 Community member Posts: 39 Connected

    sorry forgot to mention I have psoriasis and also have pitting of the nails and my rheumatologist also diagnosed me with psoriatic arthritis. I’d definitely push to see a rheumatologist

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Hi Longtallsally,

    Got doctor's appointment on Monday. Have previously seen a rheumatologist and there was no evidence via blood tests. I have 2 autoimmune conditions, type 1 diabetes and hypothyroidism. Got raynaud's syndrome about 18 months ago, contracted singles just over 1 year ago. Just feel completely knackered and everything is an effort. Wondering if to push for cortisol test as can't think what other tests I should be requesting. Vitamin D was within range. I'm usually ready to go to bed most nights by 9. Sleep well but wake up unrefreshed. No muscle or joint aches although notice feel muscle weakness generally. Sometimes feel dizzy when standing up. No signs of diabetic neuropathy although notice bare patches on legs, again probably in last 6-9 months. No headaches. Thank you for taking the time to post, much appreciated. Just looking for any suggestions for when I see GP on Monday. Thank you and kind regards Gary

  • DDDannn
    DDDannn Community member Posts: 7 Connected

    Hello Gary,

    Can I ask please? What are you eating? It would help if you detailed what you had for Breakfast, Lunch and Evening meal and everything in between (Snacks and Drinks) just make a list of the last 48 hours.

    Thanks…

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Hi DDDannn,

    Couldn't provide a detailed list as my appetite is not great and certainly don't eat a set breakfast, luch and dinner routine. Breakfast usually would be Weetabix or toast, sandwich for lunch and usually a standard cooked meal for dinner. Some days I won't eat til lunchtime, no appetite most mornings. Drinks wise it would be maybe 4 cups of coffee and maybe 3/4 pint of milk. No alcohol. Sorry I can't be more detailed but eating habits are a bit haphazard last few months primarily due to this fatigue. Due to the fatigue I know I don't spend time eating well and it really is a means to am end. No weight loss occuring although have noticed stomach fat increasing. Thanks for your post, sorry I couldn't be more detailed in food intake. The only thing I would say is that my eating habits have become more haphazard since the debilitating fatigue over past 6 months. Thank you for your post. Any advice is greatly appreciated so I can discuss what further investigations can be tried next by GP.

  • chiarieds
    chiarieds Community member Posts: 16,462 Championing

    Hi @Gary1999 - I've been meaning to come back to this, as I was wondering if the fact you'd had shingles might be a factor in you later experiencing such fatigue. I see others have also been wondering along similar lines to myself.

    It sounds like your GP is doing all the relevant tests to find out what your problems may be, & of course you should be guided by them. However, I've just been checking to see if shingles could indeed be relevant, & I've found some reports in the medical literature which suggest this may be the case. ME can be triggered by some viruses (glandular fever, for example), but I just wanted to check if shingles might be another.

    I presume you've had your serum ferritin checked already (tho both this & Vit D levels were not initially checked with my son's wife when looking at her increasing problems with fatigue).

    Has a check for coeliac disease also been done?

    Kindly let us all know how you get on after your GP appointment.

  • luvpink
    luvpink Community member Posts: 368 Empowering

    I had repeat blood tests done yesterday.

    I'm hoping a diagnosis can be made.

    I'm dreading the possibility I may have ME on top of all my other health issues.

  • Gary1999
    Gary1999 Community member Posts: 15 Listener

    Hi Luvpink,

    Hope it all goes well and that it's not ME.

  • DDDannn
    DDDannn Community member Posts: 7 Connected

    Hello Gary,

    Can I ask two more questions?

    Do you take a multivitamin?

    Do you have dry skin on the tips of your elbows?

    Thats it….

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