I am both fortunate and cursed by being able to function almost normally despite my mystery ailment. (PA+ACD?, PA+something else? Something else entirely? No one knows.)
I am a largely self-reliant person. I know there is no one but me to work, pay bills, mow the lawn, do laundry, etcetera. It gives me the drive I need to get up and do those things despite how I feel physically.
It also means that my level of illness can be overlooked. When I mentioned that I might, finally, be getting an iron infusion to my friends, suddenly the response was, “wow, that’s serious”. One person, who had wanted my help packing for a move, told me to take it easy and that I didn’t need to help after hearing my news about an upcoming infusion. It was almost laughable to me. I function through my fatigue on a daily basis. The prospect of getting one of the causes of my fatigue treated does not make me suddenly an invalid. I can still do the same things today that I was able to do yesterday. The point is that I live in a state of having to prioritize what I do everyday, because I am too chronically fatigued to get as many things done as a healthy person can manage.
Since I need a place to live and food to eat, work ranks very high on my priority list. Clean laundry is needed for work, so that’s next. Clean dishes are pretty important too. (I have a limited number, so I have to wash them or I’d run out.) I try to keep the front lawn mowed for the sake of the neighbors. The backyard is less important. The things that always end up at the bottom of the priorities list are the fun things, such as going out, meeting people, and trying new things. I live the bare minimum of a functional day-to-day existence.
Yet I’m still grateful that I’m able to do this much. There are so many people who are so fatigued that they can’t even get out of bed. My fatigue rarely gets that bad, so I’m lucky.
But I’m also unlucky, because having no definitive diagnosis and generally “normal” test results gets me labeled as a hypochondriac by most doctors. They throw up their hands and tell me there is nothing they can do to help. The fact that I’m high functioning almost works against me because, if I were truly ill, I wouldn’t be able to get anything done. The fact that I do normal things, like work and shop, gives the impression that there is nothing wrong. Short of walking around with a sign that says “I am fatigued”, no casual observer would know.
And then there’s the challenge of explaining fatigue to people who’ve never experienced it. For years I had a coworker, who had no clue what fatigue was like, try to tell me I could just snap out of it if I wanted to. She failed to grasp that I was already employing mind over matter just to make it to work everyday. Her attitude only changed when she personally experienced some fatigue herself.
While I generally don’t wish my experience on anyone, it often seems like the only way to convince doubting doctors, and others, that it isn’t all in my mind is for them to go through something similar (complete with their own experience of doubting doctors/friends/relatives/coworkers) to make them realize it is even possible to live this way.
I’m not entirely sick or entirely well. I’m a little of both. Some days it’s more of one than the other. I hope that an iron infusion will make me feel better. There are good reasons to choose an iron infusion over an injection (less painful, less risk of a permanent mark or cancer at the injection site). Otherwise they are pretty much the same. I had an iron injection a couple of years ago and it seemed to help, so I am optimistic about getting more iron regardless of the method. Right now I don’t even know when it might happen. Until then I’ll keep functioning the best I can.
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Galixie
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Reading your post made me think of how I felt prior to being diagnosed with Hashimotos - back in 2005. Have you had your thyroid checked ? I also noticed your gall bladder removal in another post - again another link to thyroid. Low thyroid symptoms often overlap with low B12 and often the thyroid is missed due to inadequate testing.
I understand your fatigue - I started my own business so I could slope off and sleep the afternoon away .... Fortunately those days are gone. I have not read all your posts - so apologise if this has been discussed before .....
Yep, thyroid has been repeatedly checked for decades and ruled out (including T3 & T4). At this point there's a fairly long list of things that aren't wrong with me, lol.
Gallstones, it turns out, run really strongly in my family, though most of my family members did not need surgery. I had stones in my gallbladder long enough for one fairly large one to calcify. I suspect I wouldn't have needed surgery if I hadn't made a poor wardrobe choice that put too much pressure on that spot. Oh well.
Pleased for you that thyroid has been ruled out. How about thyroid anti-bodies - TPO & Tg ? In healthy people the TSH is around 2 or under and the FT4 & FT3 results should be in the upper part of the range. I have seen many a result where the TSH & FT4 are good but the FT3 is low in range. It is low T3 that can cause so many symptoms including overwhelming fatigue. T3 needed in every cell of the body ..... Good levels of Ferritin - Folate - B12 - VitD are needed for the T4 that is inactive to convert into the active T3 ....
Looking good. Am not familiar with US ranges but agree with you the FT3 is quite low in range. Maybe keep an eye - as Low T3 Syndrome does exist. An internet search will bring it up - especially when you add PubMed for research papers 😊
"The fact that I’m high functioning almost works against me "
Your phrase above struck a chord with me. I have often felt that my ability to put on a good act has worked against me.
When I tell people I have chronic health problems, the usual response is "but you look so well" and I agree as I do look well, probably younger than my actual age but inside I am utterly exhausted to the extent that sometimes I feel if I lay down in bed I wouldn't have the energy to get up again.
People with invisible illnesses can have a hard time.
In past, I was diagnosed with depression and possible CFS while all the time I was highly symptomatic for B12 deficiency. It has taken me years for doctors to agree that B12 deficiency was a possibility.
I was in a group of people a couple of years ago who were discussing health.....
one said I have restless legs (and I thought I have that), another said I have heart palpitations (and I thought I've had those in the past), another said I'm in pain and discomfort from fibromyalgia (and I thought, so am I), another mentioned vertigo ( and I thought I experience that sometimes) and yet another said they were prone to migraines ( and I thought I have permanent migraine symptoms) and so it went on ......
and I thought to myself " do any of you have a clue what it it is like for me every day?"
I did not tell any of them just what I experience every day because I felt that no-one would believe that one person could have so many symptoms.
Good for you for having the determination to keep functioning.
Thank you for your post. I can totally sympathise with this - although I do have diagnosed thyroid disease (Graves and treated with sub total thyroidectomy and replacement T4 and NDT) and am supposedly euthyroid now. I have also been self injecting to treat for low but within range B12 for 18 months (I actually felt quite well for 12 months after this but struggling again) and take iron, vit D and folate whose levels are now all Ok after being very low in range for years (they refused to give me an iron infusion). I have had so many tests and investigations for all sorts but all come back ok - cameras up and down everywhere - apart from slight heart enlargement, mild gastritis and inflammation of upper intestine and always very low but 'within range' adrenal function.
I'm always getting told 'but you look so well' or 'yes I'm tired too I was out drinking with friends til 3am'! This part of the ongoing hidden fatigue is so so hard. Should I tell people I'm struggling and risk getting labelled a lazy hypochondriac because I look OK? Should I just struggle on. Yes I work part time but in a job that's very flexible and forgiving. I couldn't do anything else. I do manage to meet friends occasionally or go for a walk but I 'pay' for this - sometimes for days after. I met a friend for a short walk yesterday and this morning I've woken up feeling nauseous, my head hurts my body aches all over, I feel like I'm wearing a lead suit and yet I have to get up and go to work and smile. In fact when my friend noticed I was struggling in the walk she asked about the pain I was experiencing in my knees and did ask 'is that thyroid' I said yes. She said my Dad and brother takes thyroxine. I asked if they're OK on it and she said yes - ergo - they're ok on it what's up with you- (that's my critical voice filling that bit in - she is a lovely person but you get what I mean?!).
My advice would be to get all your blood results and look carefully for patterns and things that are low in range. Have you had adrenal function tested? I'm actually beginning to think that that may be my problem. Adrenal fatigue on top of everything else. But it's not recognised so I'm not going back to doctors to be patronised and dragged through a load of unpleasant testing. I will plod on. All the best to you.
I did have my adrenal function tested once in 2008 and it was considered normal. Looking through my results I can see that my DHEA was tested again in 2013 and it was low. It was 26. The range was 37 to 224. No action was taken and it hasn't been tested again since then. I know time of day can affect the results though, so that is probably why there was no follow up on it.
I hope you are able to at least get your adrenal function tested to see if that's the problem. Of course I can understand wanting to skip it too...
You could be speaking for me Galixie , some days my only priorities are getting showered and eating everything else has to wait, things like mowing the lawn that used to be a 20min job now take an hour with a half hour rest break in the middle and thats on a good day.Like you I also have no choice but to keep going but I understand how you feel, this dreadful fatigue gets you down and as for the coping with all the other 101 symptoms I really don't know how we get through the day at times. Keep your chin up and try and make a couple of hours just for yourself , perhaps on a Sunday afternoon to read a book,watch a DVD, listen to music or just a relax in the bath, spoil yourself you deserve it. Big hug XX
"I'm not entirely sick or entirely well" Thank you. That's exactly how I feel but you put it so much better than I could.
I'm lucky in that my friends and my daughter realise how ill I feel, it's just the GP that thinks I'm fussing over nothing.....Wish he could spend a day being me.
Sorry you're so unwell but thanks for your inspiring words today.
Galixie, thank you for expressing so well what others feel. Reading it and the posts by others warms my spirit, because I know that others live as I do and therefore I am known and understood. I know what an amazing life you are living every day, to work and fulfill all responsibilities. I returned to graduate school in mid-life because I knew I could no longer function in a regular 9 to 5 job (sounds like that's what you are doing!). I found studies about people with chronic pain/fatigue from various conditions, not just invisible ones. Other people simply can't maintain an attitude of understanding -- or even belief! Acute pain gets a response, but no one really knows how to keep responding to chronic conditions, especially for those like you who maintain functions while feeling terrible. You deserve a bouquet of flowers at your door every day to bring you a touch of beauty, just as a gesture of recognition.
Thank you. It did go well, and the grad school years provided a time with more opportunities to rest. The following work was more demanding, but it wasn't unrelenting 9 to 5. You have a powerful will to do what you do.
I so identify with this. I find it isolating and distressing that as a result of managing symptoms well, pacing and self-help, cutting more and more out of life to minimise stress and exertion, not going on and on about how bad I often feel, that people (including doctors and close friends) don't believe I'm actually ill. Which means they must think I'm unreliable, a liar or a hypochondriac. So it doesn't have a great effect on relationships. Even my partner only really got on board when I reached the stage of vomiting most days after just about managing the school run! Like you say though, there are well days and even well months so there is some hope and normality, although that's the very thing that other people can't comprehend.
Thank you for sharing! I can so relate to your story! My home situation is similar except that I'm living a more rustic lifestyle!! I was always called the energizer with my high level of activities & energy until the PA got so bad that I needed emergency blood transfusions because I just pushed on despite how bad I was feeling!! Then the scramble and waiting lists to find a doctor who was taking on new patients added to my situation. Family and friends who knew me before PA couldn't believe me when I tried to tell them how fatigued or bad I felt and would say I do more than most other folks and I just needed to learn how to relax and just ignored that I was really sick. (Or probably didn't want to know!) I was even told I brought this on myself choosing this off grid lifestyle! They did not understand anything until I was admitted to hospital and eventually given a diagnosis.
I am both fortunate and thankful for my very diligent and compassionate doctors! Im realizing I got lucky with my medical team. Anyway, I admire your independence and the fact that you continue to prioritize your workload on what's necessary in day to day living. I tried to do same but then I got too scared to really "live" the life I worked so hard for! I even left out big buckets of water for my Border Collie and taught him to open up his kibble bin so he would survive until someone decided to come out to the woods and check on me because I honestly thought I was slowly dying. (I was!) With my PA diagnosis and treatments I'm very hopeful that while I may not XC ski 8-10 miles per day any more that I'll be able to ski 1-2 miles. And I will be happy just to dog sled to road to get my mail. I just know that I can't forget to leave energy for the things I so enjoy out of life even if I have to modify my activity levels down many notches! I have to be positive and optimistic about the future I can hopefully one day have.
With your work schedule you are pushed even further and that adds to your stress. Before my retirement, I do not think I could have functioned in my job with PA kicking my butt! I would have eventually had to go out on disability until I was more stabilized in my health. Is that an option for you? I hope you can keep positive and I pray that your health can get more stabilized so you can continue to function enough to sustain your independent lifestyle and even add things to your life that bring you joy! I'm pulling for you and all the others out there in our situation. Im fairly new to PAS. This site has been both an eye opener and a blessing for me and it's so great to have this as a safe sounding board. Im finding the experiences that are shared are priceless in offering encouragement, empathy, and hope.
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