Advice on new symptoms please ... - Fibromyalgia Acti...

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Advice on new symptoms please ...

Jacqui70 profile image
Jacqui70

I'm new here and just wanted to ask for some advice please:

I've had Fibro for a good few years now. My pain has been well managed, but never before have I experienced such fatigue as I am experiencing now. I would have overdone things in the past and recovered quickly - but now, it's an effort to move and do normal things. My brain is 'with it' (if you know what I mean), but it's like I'm trapped in a body that doesn't want to do anything; my energy reserves are totally exhausted ... then I get tired brain too. I've had fibro fog, but again, this has disappeared after a good nights sleep. Is this level of severe lack of energy a "normal" symptom? If so, how long have others lasted with this level of fatigue?

I've literally just begun teacher training and know that the cause of this flare is the stress and sheer amount of hours that I've been working. It's just all so scary that, despite resting loads, I don't feel as though I'm getting better. I'm getting quite upset about it all.

Thanks for any advice guys <3

34 Replies

Hi Jaqui

May I ask if you've had any other 'extra' symptoms such as unexplained weight gain for example? Have you had a recent cold or other infection? Have you had any blood tests to check your Thyroid function especially Antibodies TPO and Tg?

If you look at the list of symptoms of Underactive Thyroid on Thyroid UK and have many of them - worth considering asking your GP for blood tests:

TSH, FT4, FT3, TPO & Tg

possibly also nutrients levels of

Vitamin D, B12, Folate and Ferritin?

x🐥

The GP did all blood tests. I'm supposed to be on triple iron a day, but can only manage two tablets. My haemoglobin is ok but with the tablets, I'm borderline on iron. My thyroid is good, so no worries there. She did put me on vitamin D and calcium - my right arm was losing power. She's given me a new tablet to help with menorraegia (don't think I spelt that correctly). I've had no viruses or cold or anything like that. Rhett only thing that changed was my job - up at half past five every morning and not going to bed until 11 pm or later. Stress during the day with some difficult classes and knowing what to do with planning.

Although I've been exhausted before, it's never been as prolonged as this. It's quite scary. My mind is saying, "ah, you're grand", but my body responds with, "Uh, no you don't, sit right back down". It literally feels like I'm trapped.

Thanks for your advice x

Yes. See what you mean. I'm an early riser. If we're up at 5.30 then really need to be in bed by 9.30 or 10.30pm at the latest. I can get away with later night occassionally but not regularly.

It seems that what's causing this current extreme exhaustion could be a combination of borderline anaemia, heavy periods and missing 1 to 2 hours sleep each night. It's such as stressful job, hope you can catch up on a bit of sleep before it makes you ill. I must admit it happened to me when I worked stressful shifts nursing. However I'm retired now so can have a rest during day if necessary.

May I ask how you know that your Thyroid is OK? Have you actually had Antibodies tested and a low result then?

I was told my Thyroid was OK but it wasn't. Only found out after getting copies of my hospital records with blood tests results.

Also - what could be the reason for having nutrients deficiencies? People with Diverticular disease can have absorption issues also people with Hypothyroidism. I have both. Recently found out have deficiencies in Folate and Vitamin D.

Hope you get some 'lighter' days soon, with your work and studies and some quality catch up sleep.

Sometimes we get so busy we get robbed of our quiet times to just 'be'.

God Bless

Love

Mary x🐥

The GP tested my thyroid and she said it was all clear. I've just moved to this area, so I'm waiting to see the new rheumatologist.

They are assuming that my lack of iron is from my heavy periods. The gp told me last week that my loss of power in my right arm is due to lack of vitamin d ... no test done for this. Should I be asking for one?

The working hours are a tricky one. I'm struggling with planning for some classes and so it takes me so long to do them. On top of this is my university work, making, and family commitments.

I would always be an early riser, but always was able to get to bed, as you say, by at least 10pm. The problem being that I work right up until I go to bed too, so no time for unwinding. I know this caused the flare. My problem being, where do I go to from here? Can I effectively do my job with this level of stress and workload? I think I know the answer - I perhaps don't want to face it. The school have told me, in no uncertain terms, that a reduction in timetable will not be possible and as for the planning, they say they're doing enough to help me. It's so frustrating. I've always been a hard worker.

Thank you for your advice, I really appreciate it. Up until now, I've managed with things very positively. It's awful how one thing can drag you down x

Rest a while. Even if you can't physically, then emotionally. Tell yourself you are going to ignore / deny stress. Take a mental break of thinking about things for a while, just live for the moment.

You will be positive again and overcome this. Yes, the heavy periods have caused the Anemia. I am not medically qualified but all I can remember is - if I make an effort to drink more water it helps. When I've been so busy I've skipped drinking water I have ended up dehydrated. This just causes more stress and confusion. It's also excellent for your blood and bowels. If you can't cope with all the iron pills can you eat liver once a week? I tried that. Also lots of green veg and a cereal that's fortified with iron? Bran flakes maybe? I only eat banana and porridge for breakfast now though. My Ferritin is low but in range, but I can't take iron pills due to severe bowel conditions (hence the name). GP didn't give any anyway.

You could ask for the Vitamin D test but as you are on tablets now it should be improved. I would have thought it best to do it first because depending on the extent of the deficiency the treatment is different for example for severe deficiency, according to NICE guidelines, initial loading doses should be presribed over several weeks and then daily maintenance dose.

I only have insufficiency so was prescribed maintenance dose of 800 IU tablets daily. It's worth asking GP if you've been tested and if not - could you have it done (along with the others B12 and Folate).

Now -

Could you manage to squeeze some special 'Me' time into your day or evening? Treat yourself to your favourite food and just relax somewhere quiet? Even if just for 10 to 20 minutes if your can't spare an hour.

Remember - there is only one of you - you are unique and Precious.

We all are.

xxx

🐥

Hidden profile image
Hidden in reply to Mary-intussuception

Unreal 😂

Mary-intussuception profile image
Mary-intussuception in reply to Hidden

What's unreal Ernist?

What do you find funny, laughable about another poster sharing their current health concerns and a fellow sufferer who has 'been there' empathising with her and offering some tips from her own personal experience that might help?

Mary

Hidden profile image
Hidden in reply to Mary-intussuception

What about Tgh Rtr Ghu Ddf Scc Dds

Mary-intussuception profile image
Mary-intussuception in reply to Hidden

So what do all these letters mean Ernist?

Seems like attention seeking to me.

If I had read these replies first then I'm not sure I would have bothered to reply to your comments on the other thread.

Strange sense of humour.

Goodbye.

Hidden profile image
Hidden in reply to Mary-intussuception

Yea some onnes got to lighten the foram up a bit it can't be all doom and gloom if you don't want to answer me Don't then I put my daffodil bulbs in on my own 👨‍✈️

Mary-intussuception profile image
Mary-intussuception in reply to Hidden

Ernist

This isn't your thread.

Your reply re daffodils isn't on here.

My replies are to the poster, unless otherwise addressed.

You mocked my reply.

Inappropriate.

If you want to "lighten the forum up a bit" why don't you write a post, start a new thread?

Hidden profile image
Hidden in reply to Mary-intussuception

I did see your priviate post Mary sorry you don't can't get my fun Never the less I know your trying to help people that's great Iv been here a long time so Iv got to get used to all the NEW-members here now I'm a kind loving percon so please don't take me to serially I suffer from Fibromygia. Tinatass, athsma Ostio Athritis RLS and deprsion so happy days I won't have fun wit you know more I will be serious with you from now on 😥

Mary-intussuception profile image
Mary-intussuception in reply to Hidden

Read the post Ernist. Wrong place.

Start your own.

M0AL61 profile image
M0AL61Moderator

Hi Jacqui and welcome to the forum.

Unfortunately fatigue can go hand in hand with fibro and it's something that many of us (including myself) struggle with. With the added stress that you have been under, that is probably what has caused your flare, and often fatigue can be worse when in a flare.

I can sleep round the clock sometimes, and yet I still never feel refreshed. I think that the fatigue can sometimes be worse than the actual pain. x

Jacqui70 profile image
Jacqui70 in reply to M0AL61

That's it exactly!

I'm feeling a tiny bit better today. Fingers crossed I'm beginning to come out of it. x

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Hidden

Have you been diegnosed with fibromyalgia You are young to have the condistion I can't see how you can build a teaching career with Fibromygia Sorry to be blunt but those of us who have Fibromygia hardly sleep get fateag to the max permantly tired and nackerd and get brain fog I wish you well xxx

desquinn profile image
desquinnAdministrator in reply to Hidden

I would not agree. Depending on the level of your fibro depends on how you will get on. Also how you manage your fibro will have a great effect on how you manage your life with fibro.

Fibro affects millions of people and the impact on those people is wide and varied. no one size fits all and their are people having careers that they continue to do after making life adjustments. One individuals situation is not anothers.

DanielleGemma profile image
DanielleGemma in reply to Hidden

I disagree with this I was diagnosed with Fibro from 19; I didn't really suffer with fibro fog and i could bounce back quite quickly to begin with. I am now nearly 25; I have a career and I am doing my accountancy degree. It's unfair to judge someone just because their symptoms are different to yours. It doesn't make her illness any less than yours.

Hidden profile image
Hidden in reply to DanielleGemma

True. No 2 of us is the exact same.

Jacqui70 profile image
Jacqui70 in reply to Hidden

I was diagnosed by the rheumatologist in February, this year, after several years of them thinking it was lupus.

Unfortunately, I'm not young (I wish), I'm 47 years old and a career changer. I have no idea what I was thinking - wishing that things would go smoothly 🙈 I knew my new career would be full on, and I've never been afraid of hard work, but this is on another level.

I just don't know what I'm going to do? I don't want to get in this state again, but at the same time, I'd hate to give up at such an early stage.

Mdaisy profile image
Mdaisy in reply to Jacqui70

Hi Jacqui70

I understand and as M0AL61 mentioned stress can make any flares much harder to deal with. I wonder if this post may be of interest;

healthunlocked.com/fibromya...

I wondered if you can you speak to your employer about the situation as you may find there are reasonable adjustments they can make that might help you due to your health conditions.

Please see link below which contains more information and also the telephone number for FMAUK Benefits Advisor who can also provide help on this subject;

healthunlocked.com/fibromya...

It can be incredibly difficult to gain a work life balance living with Fibromyalgia 24/7 however with help and support it may be that it is possible with time.

I wish you all the very best

Emma :)

Jacqui70 profile image
Jacqui70 in reply to Mdaisy

Thank you very much, I'll check these out. 😊

I'm speaking to my training provider and school today. They've made so many concessions already, I just can't think how they might help any more - but hopefully we'll sort something out.

This is the first time I've been absent from work because of fibro and I hate it. I want to be at work. Fingers crossed they'll be able to sort something between them x

Mdaisy profile image
Mdaisy in reply to Jacqui70

I understand. Please can I mention if I may a kind bit of advice try to look towards a plan of action rather than dwelling on having to be off work due to Fibro, as beating yourself up about this may not help.

If you can try to accept it if you can and consider it a minor blip that is not your fault and maybe try to concentrate energy on how to move forward. I sincerely hope the meeting goes well and the links are of help to you :)

Jacqui70 profile image
Jacqui70 in reply to Mdaisy

I was literally just speaking to hubby about how to move forward. I have two weeks to get my energy back and I'm taking both weeks to recover. I'm going to speak to school about how to move forward and find solutions. Then, and when everything has been exhausted, will I decide on my future.

I want my PMA back! I'm gonna damn well fight for it.

Mdaisy profile image
Mdaisy in reply to Jacqui70

Well I am certainly sending your positive vibes and strength to work towards a solution if this helps 🤗

Hi Jaqui.

Sorry, I didn't realise you were already off work when I wrote my reply. Thought that's what you were trying to avoid. If I read it, must have forgotten, sorry.

Hope you are feeling much better after some rest.

xx

Oh, no problem at all. 😊

To be honest, I'm so up and down, I hardly know where I'm at from one hour to another.

I saw the gp again today there, as I felt really unwell last night and today. He thinks I may be depressed. I think he's right, but it's difficult to accept it.

Just trying to beat this flare and hopefully I'll be myself again.

Did you ask the GP for Thyroid Antibodies blood tests TPO and Tg

Mary-intussuception profile image
Mary-intussuception in reply to Hidden

Hi Ernist. Just read this reply of yours.

Where's your humour gone?

Don't you think this is rather a negative response ? None of us can comment on another's diagnosis. What does age have to do with it. How does a three year old have Arthritis?

Being positive helps many people to be overcomers and 'doers '. Why shouldn't working - age adults with an illess, medical condition or disability have a career ? Many do have.

'Those of us' - generalising don't you think?

Surely we can only speak from our own individual and personal experience.

Hope you are feeling better soon.

X

🐥

Hidden profile image
Hidden in reply to Hidden

Yip im the same as u ernist wirh the fibro n fafigue

I'm thrilled you are able to do this. I used to think the same way. But this, quite literally, knocked me of my feet. I'm having a word with my training provider and school later this week, so hopefully we can come to some sort of agreement. If hate to give in now, when I've worked so hard to get here.

Hidden profile image
Hidden

Chronic fatigue syndrome is a killer for me. Best wishes 💜

Jacqui70 profile image
Jacqui70 in reply to Hidden

It never ceases to amaze me how wonderful others can be, despite their own health issues. Thank you so much and I wish you all the spoons possible x

Thank you so much x

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