feel lousy

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.

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.

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

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!  

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 

 

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

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 theyare all manageable even though there is no cure. (read my posts). I trynot 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 thesmaller 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 allthose hours is helping at all.

One thing the rheumatologist did tell me is that fibromyagia normallygoes 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

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

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 evenwhen 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 howmany people will say "why didn't you tell me before'..and be willing tohelp 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 itall 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 wehad 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. Hethought I was ok. Im not saying he is a changed man overnight (he sometimes sits beside me playing games on his phone, whilst Imsitting 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 printedcopy 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 Ihave 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.