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Newbie, plz help

PIPSQUEEK profile image
19 Replies

Hi everyone, plz dont think im a moaner ,I know there is a lot worse problems than mine ,

Im new to this site and need some help and advice,

I have been in pain in varing degrees for years, i have had steriod injectoins that worked for a short time then the pain returns in another area, and pain killers that make me whoozy.

Approx 6month ago i felt like my body has given up, i cant sleep for pain, if i do sleep , im distrubed trying to move, i need help to push me out of bed, to sit up from laying down, or even just getting up at times, i have constant rib pain, anyone that tries to touch me, i cry.

This pain is in my pelvis, ribs, shoulders, and neck, luckily its not in my legs, but i do have restless leg syndrome, my arms are ok, sometimes i cant think, my head is so cloudy, im at the end of my thether,, i have had cameras up and down, x rays , blood tests, nothing showing , other than slight acid, finally i have been given an appointment at rheumatolgy but not until christmas eve.

Any advice to ease this pain ??,

i dont want to go on sick, i force myself to get up and get sorted, taking me 2 hours to do this, i manage the day, but very quickly collapse after the days work, and then my body stops.

What can i do ? .I hate feeling like this, and feel im a hypochondriac

thanks in avance

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PIPSQUEEK profile image
PIPSQUEEK
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19 Replies
JOSANA profile image
JOSANA

I hear you loud and clear. I am going on the Cannabis program in a couple of weeks. I have severe fibro, need two knee replacements, restless legs, high blood pressure, and had neck surgery several years ago and now I have a lot of pain in my neck that goes up my head. I can't even lay down on a pillow cause it hurts, so I have to sleep sitting up.. Anyway, all of that is supposed to be gone with the Cannabis Program. If you are interested in learning about it, go the the Realm of Health Website in Colorado. The CBD cannabis that I will be on is called Charlotte's web. Charlotte had Seizures several an hour. Just a little baby. The Cannibis cured her plus cancer patients, parkinsons, now fibro, back pain, and other ailments.

PIPSQUEEK profile image
PIPSQUEEK in reply to JOSANA

hi im sorry just i couldnt possibly go down the cannibis route, that is defenitly not me, it may help some,

Hi Pipsqueek,

Firstly you are not a hypochondriac :) secondly it is very tiresome indeed to suffer like you have been.

I can't really offer a lot of advice but I can say with absolute certainty that someone else will be along shortly with great advice who will point you in the rights direction.

For me I will just say a big welcome and to let you know that you have found the best site there is for Fibro sufferers. There is a lot of very informative people about.

I hope someone can help you out very soon, but for now at least know you are not alone :)

The best of healing vibes and pain busters being sent your way :)

PIPSQUEEK profile image
PIPSQUEEK in reply to

ahh thankyou ,x

Cefn48 profile image
Cefn48

Aww god love how are u mangeing to just make every day x it must be hard but sounds like u are a fighter xxxx

PIPSQUEEK profile image
PIPSQUEEK

i work with people who need me more , this is my way of coping i guess, i always put my troubles and pains last, my rets is after tea, but i feel sorry now for my partner, as he is suffering with me not been able to help at home, i feel im getting depressed with this now as im so used to been the one to do it all.x

rosewine profile image
rosewine

Welcome to the site I am sure you will find alot of friendly support here as we all know what it is like to try and battle this confusing array of symptoms we get. It sounds as though you are very courageous and a battler to be managing as well as you are doing. Try and rest as much as you can when you get the opportunity. It is such a shame that you have to wait so long to get to see a rhemie, I know I had to wait 6 months to get to see someone at a Pain Clinic and that is after several months of asking. Have you looked at the main Fibro Action site as there are printable fact sheets there all about the condition and the different treatments and resources that are out there which you can read as there might be something there that will help.

It is a case of pacing as much as you can and do try to do some gentle exercise even if it is only stretching to keep the muscle supple. Cut corners as much as you can if you are having a flare you don;t have to cook meals from scratch if you aren;t up to it I am now resorting to good calorie controlled ready meals supplemented by fresh fruit as I realised that trying to cook things from scratch was just depleting all my energy and making the pain worse. I also make sure that the clothese I buy are easily washable and chose fabrics now that I know are crease resistant so washing and ironing is easier and if the corners of my house don;t get cleaned well so what there is more to life than that. Try putting a pillow between your knees at night as I do find that this does help with the back pain as it helps the pull on my hips and also stop me moving around so much.

Do try to put into your day even if it is only half an hour doing something you really enjoy. Take up a new hobby even if it is a more sedentary one as anything that takes your mind off your problems helps.

Good luck with everything and keep in touch with us on your progress. Do ask any questions you

want to as there is normally someone around who has had the same problems and might be able to give you a bit of help or reassurance. None of us are doctors but often we have been through similar things.x

Shadows-walker profile image
Shadows-walker

Hi when I first becam I'll 4 years ago it came on so quick I was polaxed I then went through steroids injections different diagnoses along side of fibro , and ME , know I am at home ,full time as I was in denile about how unwell I was , my body gave up in jan wouldn't play with me any more :( I spent 2 months literally sleeping in March saw Rhummie and then the test began on heart lungs etc you name the test I proberly had it most came back fine but I now know I have MCTD , sjorgrens fibro ,ME and other bits and pieces ,

I have been on a pain clinic which has helped tremendously ,

KNow if you want to rest REST ,that's what your body needs if you over do it it hits you about 10 days later not the next day ,if your in pain and haveing fatigue it's what you did back 10 days ago ,the pain path ways have changed in my body's and the fatigue pathways are the same , my gp has told me to be kind to myself and gentle listen to my body ,I now do no more than one physical job per day and one mental and that's a good day ,I have dogs ,someone else walks them , 5 days a week , I can't but I have a reason to get out of bed every day. My children have flown the nest so my dogs are my company my OT thinks it's good I have them to , I did not won't to go on the sick but looking back it was the right thing to do ,I think I might not be here now if I had not ,we should work to live ,not live to work , please slow down there is no shame in it , you are unwell if you stop now you may be able to go back ,I was stupid worried about how I would cope for money etc well I cope I am ok ,I smile now and mean it ,I am not struggling the same ,it's hard to come to terms with ,but once you do life becomes simpler and better ,I wont to see the grandchildren I haven't got yet grow up ,if I had continued I don't think I would of ,I have been given a second chance and I am grasping it with both hands one day at a time ,

Good luck shadow x

Ozzygirl64 profile image
Ozzygirl64

The only thing I can sugest for thepain is the use of ginger. BUT I must stress if you have high blood pressure and get treatment for it you cannot ingest ginger, Anyway I drink a lot of low calorie ginger ale, one of it's many health benefits being it helps with pain. Also you can put a teaspoon of gorund ginger into a warm running bath, this will help with the pain you feel at night. I hope it helps and here is a link sharable to everyone about the benefits of ginger xx

lifehack.org/articles/lifes...

Fibrofoggiest profile image
Fibrofoggiest in reply to Ozzygirl64

Eeeeekkk Lin, you say about low calorie ginger ale, but I have been told by my GP never to drink low calorie things as they are packed full of aspartame which if you google will find all too easily the ghastly things they can cause and do........... Just a gentle word of warning, not appearing to be bossy :o :-)

Foggy x

Ozzygirl64 profile image
Ozzygirl64 in reply to Fibrofoggiest

For me it matters not about aspartame, becasue to do the damage they talk about I would have to drink a hell of a lot of low cal, which I don't only when I need to, but hey what the hell my body is well and truly broke anyway lol xxxxx

Fibrofoggiest profile image
Fibrofoggiest in reply to Ozzygirl64

I suppose you have a good point there, I stopped after years of being a Diet Cokeaholic, and as I said my ago nearly went ballistic, and I have touched a drop since. Each to their own though Lin, you enjoy what you can while you can, I think that's a pretty good ethos :-) :-) :-)

Foggy x

Fibrofoggiest profile image
Fibrofoggiest in reply to Fibrofoggiest

Btw, I was drinking at least 2 litres a day of the stuff, which was way way way too much - bad bad Foggy !! :o :o

Ozzygirl64 profile image
Ozzygirl64 in reply to Fibrofoggiest

yes extremely bad lol, I have one cup a day xxxx

Ozzygirl64 profile image
Ozzygirl64 in reply to Fibrofoggiest

:)

Juliper profile image
Juliper in reply to Ozzygirl64

Cripes I hear you, I've the same attitude...if I have the energy x

Naylee profile image
Naylee in reply to Fibrofoggiest

I agree...try and avoid aspartame. They are putting it into a lot of things these days. It is bad for fibro sufferers...xx

Ozzygirl64 profile image
Ozzygirl64 in reply to Naylee

I think it is bad for anyone let alone fibromites, but the amount I have is far from the amount needed to cause any problems, plus I discussed it the GP & nurse and they agreed, my amounts are not high, but yes I am aware of it and I do keep it to a minimum xxxxxx thankyou

TheAuthor profile image
TheAuthor

Hi PIPSQUEEK

I sincerely hope that you are feeling as well as you possibly can be today? welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun!

I have pasted you a link to our mother site FibroAction below:

fibroaction.org

I genuinely look forward to bumping into you around the forum.

all my hopes and dreams for you

Ken x

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