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i was diagnosed last year after years of tests etc you all know the drill..
i have been having a bad week i can barely stay awake during the day, the only time i feel human is in the evening for a few hours, my shoulders, hips and thighs are the main areas i get pain... and my problem is right now at this minute i feel so bad i dont know what to do.. it would be pointless calling doctors well out of hours now.. i take zapain and i have just over 3 hours till i can take more but i ache and hurt so much and feel absolutely exhausted even tho i have done nothing all day.. i have tried having a bath.. no help..
is there anything anyone does when they are desperate? i keep just crying bcos i have never felt so bad .. well actually i have last year but i feel like this is the worse.. i actually feel like i wish i would just peacefully pass away right now.. i cant take much more like this..
anyone advise anything?
sorry to just come on and moan like this .. i am so desperate i have come online to find some help ..
3 likes, 16 replies
This phase will most likely pass but it is difficult to feel like that now I'm sure. Also there are pain management clinics now which hopefully you have been referred too?
Sorry to hear you are so desperate. Being in pain is horrible, but it will pass. I have a far infrared sauna at home which helps with muscle pain, which I am suffering with atm as I am recovering from the flu from hell. You need to be sure to take plenty of minerals afterwards to replace those lost in sweating. High dose magnesium is good for muscle pain. Can you apply some arnica oil, a towel and a hot water bottle to the sore areas? Weleda sell a very nice one.
As for your feelings of wanting to peacefully pass away, I am sure that most people who have or have have had M.E. can empathise with that, but I have found that doing a meditation and focusing on the areas which hurt and breathing into them seems to help oddly enough. If you are sleeping most of the day I would say don't fight it and let yourself do just that.
sorry if you have already tried these things but the most important thing to remember is that these things will get better.
I really feel for you I wish I could be right there with you to help you throu . You probally hurd of the saying been there done that got the t-shirt but its true . I never felt I would get better I thought it was for life and after sinking into a deep depression . I was diagnosed with me/cfs I was sent to a me/cfs clinic where we were told how to manage our condition. Its been slow and after 8 years I, m still not back at work but I have a much better quality of life. Doctors can not do much to help only may be pain killers, and treat individual problems. I spent thousands on alternate medicine and therapy but with no look . I found the best thingat the clinic which there taught us that helped me was graded activities. For example when I was as bad as you I could hardley walk across the room without feeling much worse. Going toilet was a nightmare by the time I got up stairs I, d have to sit down and have a long rest about 3 times.with graded activity I made a goal of walking across the room ever day then once I achieved that without feeling worse making a goal of walking across the room twice then once again when I could do that with out feeling worse setting the goal higher. We also had to learn to listern to our bodies and sit and rest not push ourselfs as this would make our symptons worse . We were told it was important to our recovery to allow our body time to heal itself .I read alot of books ,slept alot, cryed, got angry at peoples ignorance and angry at the lack of true fiends and social life. It was very frustrating learning my limitations and having to rest and sleep so much lhated it its not me but when I look back at how I was and how I am now what a difference . I do hope you can go to one of these clinic there really did help me and at no cost.
Please hang in there. I am pretty sure that alot of us have been at this stage at some point during this debilitating illness. The pain I know can be absolutely chronic I too have cried many times, and feel isolated even within my family because they do not understand. Well i do understand you. When the pain gets that bad try to think of something in your life that was really good, a moment, a day, a special hug, and let this feeling run right through your body. I sometimes imagine that the pain is this big black blob that sits in top of my head, and I visualise a hand pushing it all the way through my body and out through my toes. May sound mad, but it works for me. Other times I sit with a couple of hot water bottles and move them about over the different pained area.
I really wish I could be there to help you too.
Fight it, Fight it, don't give in to it things can improve honestly.
I send you many warm hugs, and well wishes, please keep on the site when you can and let all of us know how you doing. If you like you can send me a private message and I will give you my phone number if you want a chat anytime you are low if that would help you.
Take care, best wishes
Thanks for cheering me up this evening as well.
Thanks for the replies.. I know this wont last long! I been saying that since the beginning of the week as my bad times dont last long, i think i am getting too use to the painkillers i am on..
Can i ask what people take for the pain? i dont know that they will give me anything stronger they keep saying that it can become addictive even tho i have proved to them that i just dont have that sort of personality i only take when i need but pain is becoming worse..
I have tried hot water bottles but im suffering with hot flushes and it doesnt help..
I also do not have anyone except my mum who sadly is no help at all.. She is not the warmest of people.. And definitely does not understand or know what to say or do..
I feel a little better now as i gave in and took more tablets.. I know its bad to take more than the recommended dose but what you gonna do when ur in so much pain..
Its so unfair how this illness is seen by everyone.. I was basically told its in the head and brought on by mental health.. If im making this pain up then kill me now!
Sorry u guys suffer too xx
On a practical note, I have found far infrared saunas help with pain - I have a portable one at home. You must shower afterwards to remove toxins and you also need to take minerals to replace those lost in sweat and not stay in for too long - come out after 3 minutes of profuse sweating or you will start to lose too many minerals.
I would speak to your doctor about the pain again. Good luck.
I found tincture of sage 5ml three times a day kept my hot flushes under control. (NOTE I found sage pills useless. Only the tincture worked for me.)
I use to take naproxine,gabapentine and more that I can't even remember. For the last 6 months or so I have been placed on pregablin which for me has taken the worse edge off the pain. I have just been prescribed yesterday baclofen to take when my muscle twitches won't stop after 20 mins or so. Don't know if any of you take baclofen. As for pain, if it is that bad I would back it up with an over the counter painkiller until the worse is over.
My family don't really understand but are getting better. If you go on the site "Action for M.E.", you will find a sheet for carers of people with M.E. This explains what M.E. is all about and what to expect. Maybe if your Mum was given this, she may understand a little more.
Wishing you the very best.
you are not alone. I'm going through a rough patch myself. I feel for you and understand what you are going through. Allot of us have had negative comments made by other health professional which does not help and can get you down at your low points.
we believe you and we know that the pain is real, so try not to let those silly comments get to you.
I find soaking in some sea salt in the bath tub sometimes help ease the pain, also gentle stretches couple of times a day that focuses on the key areas that hurt allot. Also maybe gently rubbing the area(you can get those cheap Wooden/ plastic massagers), Counselling or other pain management therapy may also be something for you to look into.
I take gabapantin, amytriptaline and also having to double up with codein. Sometimes when you get that constant aching/ burning pain it's unbearable and I don't know what to do with myself at times. I'm not sure if you are on any other meds but other combination of meds may be a better option if that is possible. Gabapantin use to help me allot when I first started taking them but I think my body has gotten use to now that it does not help me much...that's the worse thing about tablets, you can get addicted or your body gets use to it and it does not work anymore.
Hang in there.
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