Anyone have chronic fatigue?

[Lucybeary]

Does anyone here have chronic fatigue (for whatever reason, mind is thyroid).

I have to function and will do anything I can to make sure that happens. So I'm wondering if anyone takes any particular nutritional supplements for this. My folate levels were borderline low so I'm taking that now and it's helped but I'm not by any means better so just wondering if others know of anything.

Thanks :-)

I'm on meds which have the side effect of extreme fatigue, so I'm tired all the time. I don't have a normal life. I can't walk round the supermarket. I have to pace myself at home. I have to rest whenever I can. I can't exercise, I was swimming twice a week but haven't been able to manage that recently because of one of the other side effects. My life is, effectively, on hold at the moment, but I'm due to stop the meds in August next year so I'm hoping that I will go back to normal then.

Hope that things do go back to normal for you. With my thyroid I do have periods of being really well but it's an up and down thing. I think the medication they use to manage it could be improved upon but because it works it seems there's no interest. I suppose I should read up more on the condition to see how I can improve my health outside of the medication. I have done, but maybe when I get time over the christmas perhaps, actually do some research.

I find Selenium helps and Co Enzyme Q10 and since I've started back on the folic acid, that seems to help, I'd really like to improve more though as it's difficult trying to keep up with expectations, mine included.

@Lucybeary I'm suffering from awful fatigue- I don't know yet if it's going to be a chronic problem, I'm really worried about it. My bloods are ok apart from my folate which is 5 . Maybe I should try folic acid. I think it's borderline.
Mine is post gastric infection.

Are you on thyroxine or thyroid supressants OP? I've been on both at different times, and chronic fatigue really shouldn't be an ongoing issue for either of thosr if your levels are being checked and managed properly. If it is an ongoing issue, you might be able to see improvements with more regular monitoring or a dose adjustment.
If it's a different medication that might be different of course

I'm on thyroxine. When I felt like this in the past the doctor would invariably give me an increase. Then he retired. He used to have a graph and he showed me that my requirement, on this graph, showed that I needed slightly more thyroxine than routine and the graph showed this additional need was consistent over time.

but then he retired and more current doctors only measure TSH. I am also already on 200mcg and a doctor told me that increasing anymore raises the risk of atrial fibrillation (a heart condition that's not life threatening but is best not to have).

My retired doctor told me that some people even need up to 300mcg and if you need it, the lesser of two evils is to have it.

Now we are out of the pandemic I'll try and get to the surgery and discuss it with the doctor. Get these levels optimal and see how I am then. Thanks.

I have an under active thyroid that I don't feel is being managed well with medication (long story!) and I am wiped out constantly. I work full time and have 2 teens and a house/pets to keep on top of.
I take the following:
B12
Vit D
Magnesium (for the cramps)
Iron
Biotin skin, hair and nails to help with the symptoms of under active thyroid.
I also take electrolytes when I am having a bad run with the cramps.
As well as supplements taking care of yourself is very important. I enjoy long hot baths (good for the cramps!), lighting my candles and relaxing after a long day etc, just something nice to reward myself for pushing through another day!
I can't say I feel full of beans but I just about manage to get through the day.

I have chronic fatigue after shingles, and possibly menopause. I was also low in iron so taking supplements for that. Also vitamin d as I don't get out much.

I have chronic fatigue related to Ehlers-Danlos Syndrome. I've also been very deficient over the tears in various things and have had to have prescription vit D / folate etc to bring me back up to normal levels.

I take B12, Vitamin D and Magnesium. The combination of keeping on top of things gives me a fighting chance of having some level of energy.

That said, I still don't have many spoons left, and a combination of this and pain from widespread arthritis means I have to manage my own expectations.

Getting a cleaner and a gardener were the best things I ever did.

Yes and I find it so frustrating. I used to be able to do most things in a day , up early, shower and make up etc school run, work, bits round the house , after school activity for dd watch something in the evening cook dinner etc. basically unlimited tasks .

Now I know I can pick approx 3 things only a day and it’s a constant trade off and I have to pick carefully. Eg if I do the school run im exhausted and feeling unwell by 9 am then the only other 2 tasks I can pick
are small ones . It’s so frustrating

I also need a higher dose than average. They test on TSH and between 1.0 and 4.0 is considered normal where I am. If mine is above 2.5 I start getting symptomatic. Between 1.0 and 2.0 I'm generally pretty good. So yes if you can find a Dr who's willing to work with you as an individual, and not just apply the 'normal' statistical range to you, then you should hopefully be able to get things sorted and not be so fatigued any more.

thanks RainbowZebraWarrior

one of the problems I'm having with having a cleaner is the tidying is more a problem to me than cleaning. I can run a mop over a tidy floor, I can wipe down tidy surfaces, it's the tidying that I struggle with and so when I had a cleaner it was more exhausting as I was running around trying to get the place tidy for them so they could clean. Have you ever had this problem or how have you dealt with it if so, I suppose it depends on the cleaner and whether they know you well and know what to do with your stuff, and don't mind tidying it. I'd pay them extra for that.

Gardener it's currently a problem in that unless I can welcome them at 8 or 9 am, they don't seem to want to know. I might be functioning at that time but I'm not really up to having a gardener outside my windows at that time. I need to keep looking, it takes energy keep searching for services too but I'm not complaining, it's just difficult at the moment. I'll keep up the regular intake of folate, etc.

greatnotagain, this is it in a nutshell. I used to just get up and get on with the day and all the things required without even thinking about it!

I need to have another blood test and get my iron checked, my gums and eyelids look pale-ish to me. Peri menopause is kicking in as well.

Interested in that story if you have time. I am on 175mcg of levothyroxine, I was told that was enough and higher could risk other problems, but I'm sure my retired doctor told me once that he's had people on 300mcg and that it's ok if you need it. I wish he were still there. It's hard to get an appointment anyway and all of that takes energy, by the time the appointment comes around I might have been wiped out by other events and just have to cancel it. It's that bad at times (I'm not one to cancel for no reason it's if I really cannot do it)

I think I need to see a private doctor about it. I'm too exhausted to even search for the right doctor at my surgery, or talk it through with them, they say the same thing each time, your tsh is normal, that's it off you go. I can never get an appointment anyway, it's just bad where I am and I think my condition has got worse in all that time during the pandemic.

Totally get that about the cleaner @Lucybeary I was in tears and on agony the first few weeks my cleaner did. I had to put aside an hour or so to tidy one room each visit in order for her to clean. We've become good friends and I told her this. (Well she could see I was in pain anyway) so now she tidied for me under my vague direction as I sit on a chair. She did my bedroom including on top of my wardrobe. It took 5 hours (two visits) and I was stressed and felt crao about it all beforehand but it was worth it. It's also her son who gardens for me. He has a key to the back gate and just gets his secateurs/ whatever tools out of the shed and gets going. He does two hours every other week. He texts me if he has questions and I reply usually from bed. I text him the night before if I've got anything specific I want him to do.

Tbh I've dreamed of this for five years, but everyone I tried ended up mansplaining to me that they were sure I could manage the garden myself if I just did 20.minutes a day. Made me want to scream and cry. It also made me hate most blokes as its always blokes that do this.

People just don't get it. You can't do 20 minutes a day because you don't currently have the energy to get washed. More and more things fall by the wayside so 20 minutes of impossible back breaking gardening a day isn't going to make it to the top of anyones list when you don't even have the energy to make yourself a sandwich some days.

I have ME/CFS, all my nutrient levels are good (not that anyone has checked in several years). I take vit D because I don't get out, magnesium to manage leg pain, and iron supplements to prevent anaemia.
Still can only really do one thing in a day, if I have to go out I need a rest day to prepare and a couple of crash days afterwards.
I've arranged my small garden so I can see plants and animals from the window every day, and sit out whenever it's warm enough.
Seeing nature really helps my mental health.

Find a cleaner who tidies. Game changer!

Also if finances permit, go and see an endocrinologist privately who can determine your dosing levels and then write to your GP to tell them what to give. Dr Vanderpump is excellent if you're within reach of London.

InMySpareTime, thanks for sharing this, I'm currently unshowered and thinking about it. I could go out and drive my car and go for a walk but I'm too exhausted to shower and dress. I told one doctor about that and he said it's because it uses different muscles and also different concentration, so he believes its harder. But I do feel the day is disappearing, especially in winter. I have washed my floors today, but that's with the flash speed mop as that's easiest, and that's pretty much it. I need to eat but that means going out to the shop as there's nothing in and going out means showering and dressing (I never go out unshowered apart from quick car runs) so I'm sat here typing instead, lol. It's not really any laughing matter, I'm going to get on with it now but I know once I would have read this and thought it was a farce. Anyone reading, it's not, I am really driven and loads of ideas and plans, this is awful and very real.

Long way of asking, how do you manage your morning routine? I need to work on that the most, my fatigue is so much worse in the morning and early afternoon.

@Lucybeary I don't really have a morning routine as such.
I have simple breakfast at some point between 5.30am and 9.30am depending how early I wake up.
This uses up all my morning energy so I don't shower or brush teeth in the morning.
Once a week DH gives me a lift to a coffee morning and that's all I do that day.
I only get fully dressed if I'm going out somewhere that people would notice pyjamas.

I have been back and forwards to various doctors and endocrinology who all tell me my levels are 'fine'. I have told all of them that I am as exhausted as when I started the Levothyroxine (175mg) but they insist I am on the right dosage! Instead they have now prescribed me sertraline (100mg) because they have decided I must be depressed (I'm not, I'm just knackered!). I have been taking the sertraline for a few months now.....guess what? I don't feel any different.

Has anyone tried the Visible app?
I'm fairly new to all this and trying to pace myself so I don't have crashes .
I'm feeling really on my own - none of my friends bar one really want to talk about it and think I'm going to get over it really quickly.
I'm finding it all really isolating.

Also I'm having a review with the GP in a few weeks and I'm going to ask for another thyroid test because the only one they did for me is the general one. What thyroid tests in particular should I ask for?
My thyroid has always been on the low side and feel I need to have it investigated a bit more. Also, are there any other tests that I should ask for apart from the usual? I have had iron studies etc and am on the low side of folate .

Yes,following a bacterial disease. It's easier to say what's NOT wrong which is heart, kidneys and lungs!

I'm an outpatient and feeling a bit mournful at the next round of last resort drugs wimp that I am.

I can get bad cramps when I wake up so it's probably my magnesium levels, interesting to hear pp talking about it