desperate for help please

New diagnosis and before diagnosis
1

HI there, i am new here but am desperate for answers. I have been ill for 5 years and am nearly 23. i cannot work and have severe depression as a result. I have been diagnosed with ME but i keep getting this tight, burning, pain in my ribs/middle back and chest. it makes it hard to move or breathe. sometimes the chest pain is so sharp i worry its me heart and have gone to a&e once to be told it was a muscle strain. yet it keeps happening and it scares me to death! im so exhausted and fed up of being brushed aside. i feel my gp doesnt know what else to do with me. i was looking for a way of describing my pain to the gp when i came across the MSHUG and its exactly likr that! now im worried about how to deal with my gp. im scared and in pain and i need hellp!

My other syptoms are as follows:

headaches, leg pain and weakness, arm weakness, joint pain in fingers/knees and hip, sensitivity to bright lights, fatigue(i sleep most afternoons as i cant keep my eyes open), anxiety, nausea, cant concentrate’brain fog’-someties i cant even form a sentance as my mouth doesnt seem conected to my brain, wheat intolerant, and the list could go on…

All blood tests have come back normal. I have not been sent to any specialists, not even an ME one. i went to a rhumatologist but she couldnt find anything wrong either.

could this be MS? shoulod i approach my gp about this? if so, how? i worry they will think im being a nusance…

thanks in advance and im sorry this is a long post

Lucy

2

Hi Lucy, you really need to see a neurologist to check out if this is MS or not. Some of your symptoms are MS-like but only a neuro can tell if it is MS or not (and many ME symptoms are similar to MS).

MS cannot be detected in the blood so you need to see a neuro and have an MRI scan of your brain to see if there are signs of MS.

Go back to the GP and take someone else if you can, someone who will fight your corner. Do NOT tell the GP that you have been looking at symptoms on internet… they don’t like it. Take a list of all of your symptoms and say you are not happy with the ME dx esp because of the tight squeezing around your ribs… which I have to say does sound like MS hug… but maybe something else causing it.

If the GP really is not listening you could tell a little white lie and say the doctor at A&E mentioned MS Hug. After all the GP will never find out and it might be what’s needed to get him to refer you to a neuro.

I’m copy and pasting a list of tips for MS hug as I get it quite a lot.

Good luck Lucy. Make that GP appointment tomorrow!

It’s a spasm of the small muscles between the ribs. Here are some tips that might help:

· Much worse in heat

· Much worse when fatigued or stressed

· Don’t wear a bra (it irritates the muscles)

· Don’t wear tight clothing… the looser the better

· Avoid large meals… little and often is better

· Lie down in/on bed if you can… and lying completely flat often helps

· Take 2 Paracetamol… if you are not on other pain med’s

· Try controlling your breathing… deep in through the nose and slowly blow out of mouth… and try and relax whole body while doing it

· Stay as cool as you can but don’t have cold shower… luke warm is better

· Rest, rest, rest and then get some more rest (if at all possible)

· Gently rub the affected area. It might feel like it’s bruised… don’t worry, that’s normal

Pat x

3

thank you for your lovely advice.:slight_smile: i havent been to my gp yet as im too ill to leave the house at the moment but i will as soon as i can. lying completely flat did ease it a bit actually but overall its still painful despite taking painkillers. i even took co-codomal and it hasnt touched the pain. ive been resting as much as i can. my mum has helped with things i need to do and gave my back a gentle massage which was lovely.

thanks again,

Lucy

4

thank you for your lovely advice.:slight_smile: i havent been to my gp yet as im too ill to leave the house at the moment but i will as soon as i can. lying completely flat did ease it a bit actually but overall its still painful despite taking painkillers. i even took co-codomal and it hasnt touched the pain. ive been resting as much as i can. my mum has helped with things i need to do and gave my back a gentle massage which was lovely.

thanks again,

Lucy

5

sorry double post!