feel lousy

Posted , 10 users are following.

I've had this for about 5 years.  Whilst co codomol take he edge off the pain I am finding it very difficult with always feeling in some form of pain and stiffness.   My family don't understand. Tests dont show anything. I know there are people worse off. I just dont know what to do and its hard working over 50 hours per week and colleagues asking what is wrong whenever I stand up and need a few seconds to get moving. I now understand this fog people talk about and have to write things down so I dont forget. People tell me I look well but I feel so desperate. 

I never hear that it ever leaves,   does it?

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  • Posted

    Hi. Sorry you're hurting. Perhaps you could have a look at the posts on LDN here. It may interest you. Don't give up...Take care.
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    • Posted

      just put it in a google search your find all the info there 

      its a med used to treat opiate and ahcol withdrawel 

      but in small studies has shown good results in very lloew does 

      of 1mg .some doctors will prescrinbe it others just want to cover there backs . 

      i think its bloody stupid myself its been on the market for 30 yrs and has a proven safty record even safe enough to prescribe in pregnancy .

      but as its not lisecened for use with fibro etc doctors want to cover there backs , dr chris steel tv gp and mbe  is backing a petition to get it researched ,by goverment funds . 

      but as with everything that makes sense its always a battle, 

      ask your gp maybe if all sufferers asked there gp for it you might not get it 

      but at least the info is getting to them my doctor didnt even no what it was 

      low does naltrexone 

      in cfs,fibro ,and ms . even autisum , 

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  • Posted

    Hi I'm also not to good at the moment! Can't move very well loads off pain in my neck! Each time I try to move loads off pain and numbness down both arms.
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  • Posted

    Hello Sorrentogirl,

    I am sorry to hear you feel so bad, my heart goes out to you. But you work 50hours per week - respect to you. That is a great achievement with this tricky condition! Tests won't show anything, that is the nature of this illness. Families won't understand, you have to guide them and show them information on-line. I have heard that it never leaves, and is now the new 'normal'. It has to be managed, and for everyone it is different. I wish you luck in finding your 'new normal', and let us know how you get on.

    Take care, Anne

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  • Posted

    Hi Sorrentogirl.  tough isn't it.  Is there any way you can reduce your hours to give you time to recover before the next shift?   It is so difficult when people ask to describe what hurts because we often don't know ourselves. The dreaded fog I have found does lift occasionally for me although I have on one occasion walked past my own road into the next one and turned into the driveway of a house and wondered who moved my home!  I burst into tears but now find I can laugh at it.    Try and give colleagues the "spoon theory". I have had to do it and although my work mates are very young when they do or ask something that is impossible for me at that time I just say "spoons" and they get it!  
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  • Posted

    iv had it 10yr s hun all i can say is its got worse 

    dont mean to make you feel even more down but its the truth for me and a couple of other  people i know with it . 

    iv heard good things about ldn might be worth you looking into it see what you think . its been on the market for 30yrs used in high does to combat withdrawal from opites and achol . 

    but some small studies have shown remarked improvment in fibro  ME and  MS .sufferers  in much smaller doses than used for its oringal use. its not liscesed for the treatment of fibro but your doctor can precsribe it if she or he  thinks it could help .. iv read several  patceints experinces with low dose of this med and they have all said side effects minamal ,and not a hinderence . mostly the inability to sleep vivid dreams nausea  but none reported that it was unbearable and they all said it only lasted for a couple of weeks .untill the body got used to it .worth considering 

     

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  • Posted

    Hi sorrento girl I have lived with fibro for over twenty years..15 years ago.I worked 20 hours and  I was a single mother with 3 children when the pain and stiffness in my back neck and hip was really bad I would take co codamol and paracetamol and sit with a heat pack on the painful areas....now 15 years later I am 57 and fortunate that I am able to work flexible hours from home... The worst pain has now moved to my shoulders and upper arms for this I take paracetamol and massage feldene gel into my arms and shoulders 4 times a day it releases the stiffness and relieves the pain...its only on occasions if I am sat at the computer too long I get stiffness and pain in my neck and back.. In the early stages of fibro it was really bad because I had other underlying problems as I have had chron's also for over 20 years and I had endometriosis and had to have a hysterectomy...over the years I have learnt how to manage my pain and finding out what triggers the flare

    ups..for me it has been spicy

    foods..dairy...mushrooms...cheese...stress..worry...things that have helped ease the pain are...swimming...water aerobics..short walks...getting lost in a good book...playing games on my iPad...  now I keep my mind and body as active as I can without over doing it for me it has been trial and error and exploring what works for me...I was told in the early stages there wasn't any meds I could take due to me taking anti immflamatory tablets I am on these for life for the chron's which keep it under control 

    for the last 10 years the pain and stiffness has become milder and more manageable...I hope this helps and you mange to find some way of controlling the bad pains and stiffness...my heart goes out to you I empathise with your suffering...gentle hugs

    Shirl girl x

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  • Posted

    Hi Sorrentogirl how are you feeliIng ?. I was only diagnosed last week with fibro but I understand how hard it is. I was horrified at first that there is no cure for the illness that has completely taken over my life until now I had never heard of it. I try to be positive (not easy on a bad day) I have lived with ashma most of my life my partner has diabetes but they are all manageable even though there is no cure. (read my posts). I try not to look to far ahead and take it day by day hopefully there will be a cure one day. I would presume you dont have any choice to work 50hrs a week but is there any way you can cut them down by making a few cuts at home?. Before I became ill my daughter or partner never lifted a finger but to be fair had they offered I would of turned them down or redone it myself anyway. Now my 17 year old daughter does the washing, ironing, housework. My partner although he still rolls his eyes when I ask does everything else that I need doing and cant manage I can then do the smaller jobs that need doing at my own pace. Have you asked for help?. I have learnt to accept and ask as i have found that if I try and push myself too hard I will suffer later on,so I cant imagine you working all those hours is helping at all.
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  • Posted

    One thing the rheumatologist did tell me is that fibromyagia normally goes hand in hand with something else as if it wadnt enough to cope with on its own. Hope tomorrow is a better day than today xx
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  • Posted

    thank  you tracy.  I'm not sure what to do.  I have diabetes and together with that an too many stresses I believe that's how I have developed fibro. I'm certain off it.  I am not good at dealing with problems and knew that at some point something had to give or I would have a breakdown. My husband and I hardly communicate.  In fact he doesnt even know what I have.  Eveyone thinks I manage when inside my heart is just breaking.  I am taking time off work next week and will try and finds things to make life easier
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  • Posted

    Oh hun Im really sorry to hear that. One thing I have found helps is talking about it to people that care and all feeling the same way. Thats why Im glad I found this site it has helped me by being able to come on whatever time it is day or night. In my case Im writing this post 2.45 another sleepless night. Sometimes I'm so busy writing or reading posts I forget about the pain. I like yourself would pretend I felt great even when I just wanted to curl up and cry in the beginning, but if you dont tell people how bad you feel how can they help. We look well so its not something people can tell just by looking at us. You will be surprised how many people will say "why didn't you tell me before'..and be willing to help with everything you need. The fact that you have had it for 5 years and your husband doesnt even know is awful how you have managed to hide it for so long is astonishing. Have you tried sitting down and telling him? I have been with my partner 20 years there has been plenty of times when I felt like he didnt care. He is one of these men who has to be asked to do anything I would resent that so didnt ask and tried to do it all myself even though I knew I would suffer for it later.. Until one day I was in so much pain and he watched me struggle with the bin bag we had a huge row but then started to talk he said he felt so helpless when I was in pain and as I got very snappy when I was having a bad time thought it best to keep out of the way. And then there were times when I didnt tell him how bad I felt expecting him to just know anyway. He thought I was ok. Im not saying he is a changed man overnight (he sometimes sits beside me playing games on his phone, whilst Im sitting there groaning with the pain.) but he helps a lot more. It is a hard illness to describe to someone who doesnt have it but I have a printed copy on fibro and ask people I know to read it. Is there is really no hope for your marriage ? If not its one less stress you need e.g time for new hubby maybe. Use the week off for a well earned rest and have a think about where you are able to cut some of the stresses from your life if you can and especially think whether you can cut your working hours. .Do you have other family you can talk to?. I am very lucky to have my mum she is there whenever I need her and has come to every hospital/doctors appointment to be a witness to how bad I got at times.One particular bad day she said if only they could see you now. The only evidence I have is scars from having hot water bottles to hot. My partner offered to come but I just wanted my mummy lol I have never been very good myself at coping with pain and have a couple of times just sat and sobbed in front of the rheumatologist when yet again he tells me my latest scan/blood test is clear, my mum has had to do all the talking. Is there anyone close to you that can help once you admit how bad things are?.Hope you have a good pain free week and good luck xx Back to bed for me to try again.
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    • Posted

      Hi Tracy so sorry to hear your having a bad time with fibro and so pleased you have your mum's support and help when needed I have lived with fibro for over 20 years and I just want to say time is a healer and with trial and error of finding out what works best for your health should improve its all about finding the right balance with exercise diet and pain management unfortunately it is a journey we all have to go on if we can compare our bodies to a car it needs a regular service and a mot once a year
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    • Posted

      when you fill the hot water bottle up if you wrap a tea towel round it you still get enough heat and you won't burn your skin also a heat pad in the microwave is much nicer as its s covered in fabric soft and moulds to your body take care gentle hugs

      Shirl x

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    • Posted

      Hi Tracy it was interesting to read that when you write or read a post you can forget about the pain I found if I read a good book I could lost in it and forget the pain also doing crosswords

      and playing candy crush games help me I feel it is so important to keep our minds as active as possible just as much as keeping our muscles moving there is an old saying that comes to my fibro fog mind if we dont use it we are in danger of losing it I have had experience of seeing my mother go through so many cruel debillitating illnesses and just existing until she gave up and died 13 years ago I have been through some rough times over the years and I have never forgotten what she meant when she told me to live my life sorry if I may have scared you I didnt mean to I just felt emotional thinking about my mum take care x

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    • Posted

      Thanks Shirl. Only just noticed your post just off to bed with a good book. I have started wrapping in a bottle in a tea cloth and when I get in bed now I have got into a routine of taking two bottles then I lay a towel across my chest and rest one bottle on my chest and the other up against my side or wherever else is hurting at the time. As you can imagine this is a huge passion killer lol as there is not much chance of that anyway with the pain I then reach for my book. When I went to pain management for first time last week I warned her about the state of my stomach straight she said "Hotwater Bottle burns? We see it all the time". I will think of trying the heatpad hopefully wont take so long to wait for it heating in the microwave.. If someone offers to do my boSorry to hear you have lost your mum. I dont know how I would of coped without mine. She has never been a mum who fusses around but she has been there whenever I have needed her which is often. Hope your having a good day. Xx
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