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Not coping well :-(

Hi Everyone

I'm just feeling a bit low just nowcrying1.  It's been a difficult week, and it feels like no-one understands, so I thought I would come to the place where I know many will really understand just how I feel.

All this week the pain in my buttocks/legs has been a lot worse.  When I sit it feels like I'm sitting on broken glass, and my legs feel like they are being gripped in a vice which has razor blades in it. On top of this I feel so drained, yet I'm finding I can't sleep well.

I've been using my stick on the two occasions I've been out. One time was just 2 roads away to visit a friend, but I had to sit on someone's wall to rest halfway.  The other was a bus ride to the small shopping centre, but I could only do one shop & had to come home.

Currently, I've been diagnosed with CFS/ME, but I'm not sure that this is a correct diagnosis.  I understand that CFS is of sudden onset, but my pain/fatigue has been progressing for over 5 years now. I'm also not sure if the sort of acute neuropathic pain I've described above is typical of CFS?

Anyway, I've had a good cry, and just wanted to come where I know folk will understand.  Thank you for 'being there' for me to let it out to. You are all appreciated.

Bren x

 

Hi Bren,
A sometimes a good cry can work wonders. If it was me I think I’d pay a visit to the gp. I have neuropathic painkillers. Amtriptyline, and they woke for me.
Hope the sun comes back soon to cheer you up,
Chis

Oh Bless You.

We understand how your feeling and how things can be a struggle.You are not alone.

Chris is right,you need to go and see your GP.You may need some tests done and this can rule out or in any problems.

If I could hug you bren2 I would......

I have just had my Amitriptyline trippled Chris and I still need pain meds on top.

Charlie,x

 

Aw, (((hugs))) Bren.  Sorry you are feeling so poorly love.  letdown

Much as friends and family may try to understand, I think you have to be there to know how poo it is and we are all rooting for you.

I'm in the ME boat too and slowly getting worse.  I've read about the sudden onset thingy but mine has been a gradual thing so not sure where that leaves me either.  It may be worth having yourself tested for fibromyalgia though as I know that can cause a lot of pain and seems to be related to ME in some way.

I had an amazing week last week and actually had some energy and got some stuff done but this week seem to be back to square one.  Still, at least it was summat. cool

I find a good cry now and then quite therapeutic, so I hope it has helped and that you start to pick up again soon.  Just be kind to yourself.  thumbsup

Big hugs,

Mags xx

Oh love! the way you describe the pain in your thighs and buttocks is EXACTLY the way I described mine.............this was BEFORE I was prescribed amitriptyline.

This is going back to 2000. i didn`t have a diagnosis at the time, but i saw my GP and said, `Ok I am disabled. Okay I probably won`t get better. But do I HAVE  to be in so much pain?`

The doc was a locum and was so understanding and caring. He gave me the drug, which I had to increase from 25mg to 100mg before it finally zapped the pain.

Not everyone can tolerate it, or at such high levels. I think it is marvelous. I have tried to reduce the dose, but the pain returns.

Ask your GP about it, eh?

luv Pollx

((((((((((HUGS))))))))))

Please go and bang on a GP's desk! You need pain relief!

I hope next week's a better one.

Karen x

Hi bren you describe it very well:

When I sit it feels like I'm sitting on broken glass, and my legs feel like they are being gripped in a vice which has razor blades in it.

I have this right now. It is always worse when I am exacerbating, like now after my visit to the dentist.

I dont have M.E. probably if anything my GP has told me it would now be PPMS but I havent bothered to go back and chase a diagnosis as I cant be bothered.

M.E. is not progressive.

It waxes and wanes yes, and you get periods of feeling really well, but then the fatigued will take over. Most people with M.E. find it hard to get up in the morning and never feel refreshed. My daughter has it. At the moment she is in a good place with it. She does not experience the same pain as I do, although her legs will ache if she overdoes it, this is not neuropathic, and she doesnt get nerve pain like i do. When she is having a flare she cant get up really, and then cant sleep in the evening.

My mornings are good yes I have problems but I can usually get stuff done and then I get tired after lunch time....and go to bed early and can sleep right away, however, i always wake up at about 1am for the loo and then my legs are killing me and I find it hard to sleep, but I usually do  i would say my pain is worse at night.

My nerve pain and fatigued is not made worse with exercise hers is. I can dig a garden (well not anymore lol), and it wouldl make no difference to me either way. 

I would think you need a review of your illness to be honest. It sounds like nerve pain to me....Big hugs, its miserable i hate this particular pain and I love your description of it. xxxx big hugs. maria

 

 

Oh, thanks so much everyone - I needed those hugs!

I've tried Amitriptyline in the past, and it was effective plus helped me sleep. But it gave me heart palpitations so my Consultant told me to come off it.

I'm now taking Pregabalin, but at quite a low dose of 225mg. I probably should increase them, but I'm struggling so much with the weight gain that I don't want to go up any more.

Yes, I should see my GP. He's a 10-minute man & shows me the door after that time, so don't know that he'll give me time to really explain! letdown However, I'll try him, as this week has really set me back.

You've really helped with your caring replies - thank you so much.angel What would I do without you all on this site?

Bren x

 

Thanks Maria for your caring reply and telling the difference between ME & MS pain.  I'm really questioning my diagnosis as I feel 'exacerbation' is what I'm going through this week.

At a previous consultation with my Neuro, another doc in the room suggested PPMS as a diagnosis which really fitted my ongoing symptoms, but I've had a clear MRI (other than age-related white matter, lol!).

So, it's ME for now. Your post really interested me to see the differences put in writing.  Thanks so much.

Bren x

Thanks Maria for your caring reply and telling the difference between ME & MS pain.  I'm really questioning my diagnosis as I feel 'exacerbation' is what I'm going through this week.

At a previous consultation with my Neuro, another doc in the room suggested PPMS as a diagnosis which really fitted my ongoing symptoms, but I've had a clear MRI (other than age-related white matter, lol!).

So, it's ME for now. Your post really interested me to see the differences put in writing.  Thanks so much.

Bren x

Thanks Maria for your caring reply and telling the difference between ME & MS pain.  I'm really questioning my diagnosis as I feel 'exacerbation' is what I'm going through this week.

At a previous consultation with my Neuro, another doc in the room suggested PPMS as a diagnosis which really fitted my ongoing symptoms, but I've had a clear MRI (other than age-related white matter, lol!).

So, it's ME for now. Your post really interested me to see the differences put in writing.  Thanks so much.

Bren x

Whoops! My PC got carried away with these repeated posts!! Sorry!

Bren x

Your very welcome Bren2,we are always here for you.

happyflower

Gosh I have never even met my doctor who I am listed under.Ive been seeing another doctor at our surgery.She is very good and listens,even helps when I slur my words.

Dont leave until you have had your say.

As CFS is inflamation of the brain and spinal cord  .This causes muscular pain, joint pain and severe headaches .This can also cause depression.

Go and see your GP and do not leave untill he/she has heard what you have to say and has given you something to help you.

Bless you.

Charlie,x