Still In The Bed

[PaigeyPaigeForLife]

Checking in, it’s been a rough time for me lately, I have a some days out of bed but more days in bed that I like.

If this continues throughout the weekend I will be making an appointment with my pcp. I don’t know what else to do, I am tired of being tired and being in bed all the time.

[murtoz]

Sorry to hear that. Wish there was something I could do. Hope things improve for you

[PaigeyPaigeForLife in reply to murtoz]

Thank you

[klr31]

What tests have you had to rule out other conditions?

[PaigeyPaigeForLife in reply to klr31]

I have been tested for a lot of things, the last specialist I saw was a neurologist, endocrinologist, cardiologist, nephrologist because I also have pkd/ polycystic kidney disease, I have also seen by infectious disease specialist. I'm used to having different test done every week sometimes three times a week along with my many visits to the er because of my kidneys.

I am tired my faith is being tested but I keep asking God to strengthen, comfort and heal me.

Thanks for asking, how are you doing?

[doglover1973 in reply to PaigeyPaigeForLife]

Hi PaigeyPaigeForLife I'm sorry you're struggling . I've been ill with cfs/me for a long time . Take heart. God is with you every step of the way (Job 23:10)

[PaigeyPaigeForLife in reply to doglover1973]

That I believe, He answered my prayer and today I am able to be up and not in the bed. I hope are having a fantastic day as well🙏🏽

[klr31]

I am doing better since I have been optimally medicated with thyroxine - which took a few years. I still have M.E. but not so many ups and downs, or feeling so awful. I suppose I wondered if you had had your thyroid checked. It's always best to get your results too as doctors don't know too much about thyroid problems unfortunately.

Karen

[PaigeyPaigeForLife in reply to klr31]

I am loving the good news about you doing better.

I had my thyroid checked before, I saw my doctor on Tuesday and she did another type of thyroid test and also scheduled an appointment with an Endocrinologist. Today is is a very good day for me, I am not in the bed and enjoying it.

[RhianR]

Hi x I sympathise 100% as I'm predominantly housebound and bedbound due to ME/CFS. If I try to do anything outside the home I immediately get the most horrific post exertion malaise and crashes, and am in a far worse state than before. It's a total vicious circle and utterly soul destroying. And nobody (apart from us who suffer) can actually see our suffering, and we are constantly gaslit by so called friends and family. That's my experience anyway. Before being struck down with this horrific illness I was a working single Mum with a Professional Career for 25 years, a good social life + used to go to the gym and run a lot. I'd finally escaped an abusive husband only to fall victim to another abuser called ME/CFS. We feel alone and invariably are alone.....but we're not alone on here so do keep checking in. Take care xx

p.s I also suffer from Hypothyroidism (Under Active Thyroid) and Hashimotos Thyroid Disease which was all diagnosed before ME/CFS. My Thyroid illness was very poorly managed by the NHS (UK) & the meds have never alleviated my Hypothyroidism symptoms. I believe my Thyroid problems contributed to my developing ME/CFS but it's too late now for me in that respect. If your Thyroid Function Tests don't look right get a second opinion, but I'd recommend going 'private' because no NHS Endocrinologist ever helped me. I've had to seek family help to £pay for any private health advice which is humiliating but necessary since the NHS have abandoned our community long ago. Good luck 👍xx

[PaigeyPaigeForLife in reply to RhianR]

I am so sorry to hear of your struggles with this terrible illness, I am in the United States Of America, my doctor just had me do another thyroid test and scheduled an appointment with a Endocrinologist, I will see where it leads meanwhile I am asking God fir healing.

Today is a very good day for me as I am out of the bed where I've been for almost 6months! I am about to put on makeup get dressed and get out of the house 🙌🏽

I hope you have better days 🙏🏽❤️✌️🏽💪🏽👆🏽💐

[RhianR in reply to PaigeyPaigeForLife]

❤️ thanku very much & so sorry for such a late reply but realise you'll fully understand. Take care of you xxx

[klr31 in reply to RhianR]

I think my underactive thyroid contributed to me getting M.E and being so unwell for many years. I'm not better now I'm optimally medicated but definitely more stable and can do a little more than I used to be able to. It's always advisable to check your blood test results yourself and also get D, B12, ferritin and folate checked as these can affect absorption if low.

Karen

[PaigeyPaigeForLife in reply to klr31]

Karen I get check regularly because I also have Polycystic kidney disease, my pcp is always testing me for lots of different things. All things considered I am thankful for life.

I hope you continue to improve or better able to manage M.E

[klr31 in reply to PaigeyPaigeForLife]

Yes, me too but it's a difficult life isn't it. Thank you for your kind words.

Karen x

[PaigeyPaigeForLife in reply to klr31]

No problem, I hope you are having a comfortable weekend.

[klr31 in reply to PaigeyPaigeForLife]

Thank you. Hope you are too.

Karen

[RhianR in reply to klr31]

❤️ thanku very much & so sorry for such a late reply but realise you'll fully understand. Yeah, have had all those tested and take BIG doses of supplements + Liothyronine alongside Levothyroxine for Hypothyroidism & Hashimotos since 2011....makes no difference sadly. Liothyronine for the past year. Take care of you xxx