Which does everyone find worse the pain or the exhaustion, or both?

[geewii]

I had my grandchldren to stay and the exhaustion has been worse than pain. Everything especially my back and legs is so tender to touch, I can only sleep on my side in bed, in fact that is the only way I can relieve this exhaustion. Sitting is difficult and reading my arms ache. I sweat so badly when I am like this and I feel so depressed. Do others find the pain worse or the exhaustion during a flare? This last time I felt hot and cold chills rather like the flu, today still achey but the pain in my leg last night stopped me from getting to sleep so I took two strong pain killers and a sleeping pill. I also suffer from hyperthyroidism and diabetes and disc problems in my back and I am waiting for the results of latest blood tests. I am so fed up with this.

[Hidden]

Hi

give your self a break you may be tired as your grandchilren stayed .. so some time out if possible to recover maybe needed..

For me its both I can deal with the pain if i not tired i can do the tired if i not in pain ... hope that makes sence ?

i love reading and its and a way to excape ...I would recoment talking books from the libery they may have a small charge but its soooooo relaxing to be read too and have the story told they record the whole book .. If you are a big reader my other recomendation would be short reads also from the libery these are specially writen books that are about a hour or two to read .. If its focus big print ..

I am sure you have seen book pillows .. I have one to rest my book on..

Good luck at the doctors xx

Gentle dyslexic hugs

[SootyB]

Hi,

I'm the same as Lexie, really - one without the other is bearable, but both together leaves you with no strength left to cope.

I also have difficulty reading a book, so - when I'm in more pain than usual - I tend to switch to e-books on a Kindle (other e-readers are available ), which means that I can rest it on a cushion on my lap and only have to use my hands to press the button to turn the page. It'll even read to you, if you're too exhausted to focus on the words. Much less strain on the arms, but doesn't deprive you of reading material.

Hope you find some relief soon, and start to feel better.

Sara xx

[Sharolina]

Hi Geewii,

Because I easily tire, and can't stay focused on any one thing for long, I find myself doing things in short spurts. However, when I'm real bad, I will quietly read my kindle or kindle on my Mac, which has a much bigger screen. I find, that the chair I use in my snug/office is probably the most comfy place in the house, where I can relax, read or do other hobbies for a much longer period of time. The only downfall, is when my thighs & bottom start to ache - it's time to stand. That's when pain really kicks in; as I have to slowly unfold myself and take the first step. I do believe that wherever our current pain levels are at, we are all decided on what gives us pleasure, breathing space and a place to just 'be'. I always ask myself, "Is the pain worth it?" or "How will I benefit from enduring the extra pain?" There is a phrase that says this in a much better way, and I actively say to myself now instead. It could apply to anything. whether it be physical, emotional or mental: "IS THE JUICE, WORTH THE SQUEEZE?"

Be as well as you can.

Sharolina

xx

[Hidden]

hiya it depends on the day im having as to whether i can cope with both really.on most days its both.

[jekkstar]

Hi,

I am newly diagnosed and have no meds as I have devloped a few allergies so hospital/gp are trying to sort things out.

Atm I find it hard to cope with both. At night the pain in my legs and back is immense and I struggle even with the weight of my pj's on my skin. And i constantly feel like I am just waking up.

To compound the issue I have a meeting with my employer tomorrow who I know is looking at terminating my contract. The thought of going to my place of work is driving me to despair. And I am itching myself raw in a nervous scratch. But to answer the OP, on a good day I can cope with the pain, on a tough one I want to curl into a ball and hibernate until I feel normal again.

Hoping with meds I'll be reborn like a butterfly, we'll see

[ladyyingtong]

oh you poor thing. it sounds just awful. yes - I too get awful pain in shoulders +

back of legs + pins and needles in hands - but the fatigue is the worst.

Hope so much you get some relief.

Cheers

yingtonglady

[geewii]

Thank you everyone, I didn't know about book pillows, can you get them in the shops or internet? I would love a kindle and must start saving for one, and the talking books are a great idea, I don't know why I didn't think of that before as we have a local Library right next to our surgery. Do any of you have this problem with noise? Just realised that I wrote the wrong word about my thyroid problem, it is underactive and I should have written hypothyroidism...I must be feeling a little better as my memory for words has improved.

Hoping Jekkstar that your doctor will help find you the right medicines and the meeting with your employer turns out not as bad as you expect.

[Homer in reply to geewii]

I hate loud noises of late, it's just horrid and very odd how this happens !!!!!

Nicki xxx

[Devonlady]

The thing I find hardest is not being able to have my grandchildren to stay as I can't be trusted not to have an accident and wouldn't put them at risk for the world. I can see a car comming towards me when I cross the road but the sygnal from the brain to say stop gets lost and I often walk out infront of cars. The pain is bad, the exhaustion is terrible but not trusting yourself to look fter your grandkids is a killer.

[Celticmoon]

Hi there

You are definitely NOT alone!!! I also feel exactly like I have flu during a flare - the sweating, chills, shivering & of course the tenderness and pain, that feeling of your skin not being your own, the hypersensitivity... on & on... ... ... Like you I have thyroid problems (well more specifically pituitary ones, which affect my thyroid) so I know that some of the temperature sensitive problems are probably due to that. I often feel that at 53 I should be able to do so much but unfortunately I feel like I'm 93 at times!!

I have 3 grown boys, 2 daughters-in-law & a gorgeous granddaughter who is 2 & I'd love to be able to look after her more than I do. Soon my eldest boy, his wife & my granddaughter move house & they want us to have her for a couple of days, which we have done several times since she has been born. It is SUCH a joy to do this but there is always SUCH a cost... I spend the next 10 days almost bed bound for the sake of 2 (half) looking-after a two year old!!

I adore my children and desperately want to do Sunday lunch every week but this is getting more and more difficult even with my husband who helps me. For me it isn't a case of DECIDING if the risks outweigh the benefits I just adore my family & couldn't imagine life without having this regular & enjoyable contact over meals etc.

Anyway, I hope you manage to rest away the worst of your difficulties & once again enjoy the contact with your family. Take the very best of care & be gentle with yourself until your energy returns... as it surely will. xx

Gentle hugs xx

[julieevh]

I think the exhaustion is worse ... I am comparatively lucky as I can get through the pain without the heavy duty pain-killers. But it is the need to sleep sometimes 20 hours a day that is stealing my life away.

Julie xx

[Midori]

The pain is bad, but can be eased somewhat by medication, but the exhaustion is really debilitating, to mind as well as body.

Cheers, Midori