I want my life back

[Poppetts]

Hi I'm new to all this...iv been suffering extreme pain for the last 4 years to the point I can barley get up some days I was hoping for some advise from other sufferers?....

[Poppetts]

In so much pain

[Poppetts]

I feel like no one understands the pain I suffer

[Molly_1919]

Hi. I expect that you will have seen many posts from many people on here so have some idea as to the extent of the problem. I'm going to say something that I was told 30 odd years ago when I was diagnosed. It sounds harsh but it was the most valuable piece of advice I was ever given. It was - get used to it, lift your head up and live your life. After I stopped feeling sorry for myself I did just that. I have friends whi have worn the condition like an overcoat and went downhill accordingly. So, it's about learning to live with it, rest when you need to and fight like fury the rest of the time. All the best.

[neesey1005 in reply to Molly_1919]

I agree totally with you - I had about 3. Months talking about fibromyalgia - and my OH kept saying "are you ok" - treating me like a baby 😒. And I felt so sorry for myself and crawled into a hole and did nothing but feel sorry for myself - worried myself sick about the future and our relationship turned into patient and career - then one day - I just pulled myself up and told my OH and family that I didn't want to keep discussing fibromyalgia and if I felt very ill I would tell them - and now I go out, do things , rest and pace - and I am much happier and my health has improved so much ☺☺☺☺☺ x

[Wavelength in reply to Molly_1919]

You are so right! It's really down to "self" and how you choose to deal with it. However, when the pain is so bad and your brain cells are tricking you sometimes it's very difficult to believe in anything. It's not until you come out the other side of a flare up that you can grasp any form of normality. I have a note stuck to my mirror so I can see a message reminding me to notice how the world looks when my mind is agitated and unhappy and again how it looks when I'm calm and happy.......... our perception defines our experience! all the best

Wavelength

[Jcwg]

Hi, please take Molly's advice, I am also quite new to Fibro, diagnosed 10months ago, I feel I have been to hell and back the last 6months, I myself went downhill, tried every thing possible, about 3-4 weeks ago I decided I had had enough of doing nothing, and decided to to the things I enjoy, not to the degree I used to do it, but the feeling I got from walking, gardening etc was unreal, I over did it yesterday so am suffering today but I actually feel like I have a life, I did start on anti depressants 7-8 weeks ago, which has helped me, took about 6 weeks to start feeling happy again, they have obviously given me some help in getting back in to doing things, I did very little for the 6 months, only got worse, I was so wrapped up in it all and I wanted my life back, I've been off work 6 months and am not sure if I will ever be able to do the job I did, you will have a life just a different one from what you thought, I have joined a hotel leisure pool, very cheap, I enjoy it, meet people etc.

my life is not what I had, but things I have started doing actually make my life bearable more than I ever thought it could.

Gentle hugs, try saying to yourself each day, I will be more kind, gentle and caring to myself. X

[Tishie]

I so understand. I too am sick to death of the pain and all the other symptoms. I gave up some 3 years ago when diagnosed for the first 2 years, was depressed not going out lost contact with friends put on weight shut myself off from my family etc. Then hubby went to social services and got me help, a carer who cooks with me and takes me shopping etc. On Thursday we are taking the camera out for the morning. It has changed my life ! Pain is there still but life DOES go on with or without you. You can choose to miss out on it or join in the choice is yours hun. I have Fibromyalgia I am NOT my illness xx

[Rafibro]

Hi Poppetts and sorry to hear your suffering the advise above is so right, the way my counsellor explained it many years ago was to grieve your old life and the things you used to be able to do no trouble & to learn to live with your new life, it certainly helped me.

By the way what a beautiful pug? What's he or she called? We have 4 pugs they are amazing and so therapeutic xx

Take care x

[Poppetts in reply to Rafibro]

Thank for your kind words that's ruby the pug I have 3 pugs boo boo and ozzy they are amazing my babies. I was a pug breeder fir a while it's very very hard work so iv given it up because of this bloody fibromyalgia hugs to your pugs hope to chat soon.hope your ok Debbie x

[Rafibro in reply to Poppetts]

Sorry Poppetts ive only just Seen your reply x

I agree pug breeding is extremely hard work, especially the letting go part, we bred one of our girls & even though my friend who's been a breeder for years, and my mum did most of the work, I still found the emotional upset of letting them go to a new home so hard xx

I do think they are the best therapy xx Love to your pugs xx

[Bertiedette]

Poppetts so sorry that you feel so down...

We all go there at times but I think that once you accept it that you can start

Working with ways how to manage it.. I think that exersise is important. Like

Rafibro said ..I do swimming exersise bike and a little walk ,just keep strong and

Some days you will laugh in its face.. Will keep you in my prayers. 🌞🌞🌞🌞💕

[joed]

Hi I feel your pain I've been in pain for over Severn years but severe pain for about three I like you have really had enough I been shoved from pillar to post and seen so many different specialists and had that many different meds and treatments yesterday I started my latest lidocaine patches , I've woke up this morning an feel like I've been hit by a bus sorry don't want to waffle on bout myself I know its an uphill daily battle but we have to fight this somehow take care always here for a chat joanne x

[Poppetts in reply to joed]

Hi joane I know what your saying I'm so sick of saying I'm in agony I can't sleep it's al abit to much. I was only told this week that it is fibromyalgia. Told the doctors 2 years ago that I had this condition they made me feel like I was going insane so I feel bit mire positive now I know I'm not alone. I'm going to try and get into a swimming routine like you said its a battle hooe you ok chat soon Debbie x

[Hidden]

Ho poppet, we all get to the stage when we have just had enough,and we wallow in our own self pity, which is a shame, but sometimes we just cannot help it. But as others have said, hold your head up high and try and get yourself through the day. We all have to pace ourselves , and we all push ourselves too far on occasions, well most of the time. Lol. Take each day at a time, I have just had an horrendous few days, to the point I wanted to cry, but I plodded on, and got through it. It might also be a good idea to have a chat with your GP, and discuss, your pain management, also what type of painkillers will help you the most. Try and get your self in a happy space if you can, it does help a little, and I wish you luck with getting the pain management that you obviously so need. Take care.x😁

[neesey1005]

That's. How I feel some days and it upsets my OH so much and our relationship plummets - so for past month I have concentrated on - not bringing fibromyalgia into our lives all the time and trying to achieve the best out of a day I can - and I know its hard but it helps to find something else to occupy your mind - I have to lose weight - to improve my health so at the moment I am sorting out different foods and recipes that will help me - also I do some kind of exercise everyday (however small) -with "happy music" - and I make sure I arrange something every week to look forward to - just small things on my calendar - tomorrow I am going for coffee with friends , Friday I am going for a gentle swim, Monday I am going gentle aqua. - I try and do as much as I can at the moment - in case my symptoms get worse - please make sure your meds are right to ease the pain - sunny here today hope it is where you are 😊

[Poppetts in reply to neesey1005]

Thank you for your advice means a lot could you share some of your recipes I need to lose weight make it easy I hate cooking lol hope your well xxx

[Betty67]

Life will be different, does not mean it is over. I have had the condition for nearly 30 years and have been up and down several times.

[Hidden]

I have messaged you love xxx

[LOESHE]

Hi everyone, I agree with all of the above about keeping going and continuing with gentle exercise, and trying to look at the positive things which remain in my life. I find that meditation is a tremendous help. I have done this for many years, before fibro appeared, and can now use it to help get through painful episodes wherever I am.

Also I must fully agree with Dottie 2011 regarding the use of Magnesium, I take supplements and also use a magnesium spray. The other vitamin which seems to really help people with fibro is Vitamin D3 , as this also seems to be deficient. I dont know how to paste the link on here but there is a lot of info online about the benefits of taking D3. It has helped me more than I could say on here

Take care everyone x

[BlueMermaid3]

Hello Poppetts

Welcome to the forum You have found yourself a bunch of wonderful, caring and compassionate people.

If you have a look at our mother site, you will find lots of interesting information on there fmauk.org

I have been on the forum for 4 years and have suffered with Fibromyalgia for over 30 years. Since I have joined the forum I have made some truly wonderful lifelong friendships.

I would highly recommend that you get into the habit of locking your posts. Unlocked posts can be accessed by absolutely anyone on the internet without even logging into the forum. Locked posts can only be seen by members of our community. There are instructions on how to lock posts permanently pinned to the forum on the right of your screed under Pinned Posts in blue. Here is a link to that post:

healthunlocked.com/fibromya...

If you need any help don't hesitate to give me a shout.

Wishing you less pain and more peace

Lu x

Admin

[Shadows-walker]

Hi my love I made the exact same statement just over 2 years ago when I first came on here ! The help and support I have received has been fantastic since !

Ok well have they your Drs suggested a pain and fatigue clinic ! Now when I went on this I expected to be seen by a doctor and at the end of the 6 week course to be able to ride my bike , fly my kites ,walk my dogs shadow and Murphy ! I thought I would be seeing a pain specialist who would give me pain meds and I could run a marathon basically , it's not like that at all , we all think we know our body's well these people explain to us why,how , and what to expect from now on ! They teach coping mechanism to deal with most days , they teach us to pace ,to except , to rest and not feel guilty,they teach us to cope ! You must have an open mind and if you do you will learn to like,love and understand your body again , there will be days of tears still and you will still get frustrated but it will get easier !

Life is different know , you can still have fun but its quality over quantity, learning yo pace us all important says she that's been run ragged recently and is stuck in bed today ! If you read the spoon theory or even better listen to the lady who wrote it on utube ,it explains how to use your energy, as if your like most of us we could and can learn to cope with the pain it's the fatigue that's the killer !

Also the best drug according to my rumatolagihst at the moment is gabapentin! For fibro I am not a doctor but I can steer you to discuss this drug with your medical team.

And most importantly the best advice I was given in the early days was from my old GP "be kind and gentle with myself " it's a hard one to learn , you need to slow down your in pain as your doing to much ! Your body has rewired itself and now you have more pain receptors, the pain you now get is to intense an abled body person isn't going to get it unless they were to keep touching one of those electric pluss games you know the type I am sure ,or they were to wear a electric dog collar !

Gentle hugs , off for a sleep now !

Chris xxx

[Hidden]

I can see that you've had a lot of suggestions. I will just wish you good luck and best wishes. 😊

[savanarian2008]

I have recently been diagnosed after 20 years of nothing wrong with you I am a full time carer of my severley disabled son who after a brain tumour left him this way aged 4 years he's now 23 years old and is always smiling and laughing on my bad days he makes me realise life is for living it's just me and my husband who looks after me and him I walk through the pain when it gets bad my motto has always been no pain no gain keep smiling and laughing life's too short to get down

[Matrix]

Me too but it's not going to happen I have had it over fifty years started when I was twelve so I know what I'm talking about I have several other things wrong with me . What I know is this you have To grieve the life you wanted and accept what if. now is ,once your through grieving you can start to accept . Don't do what I did I wasted so much money chasing a cure , there is no cure and the best advice I can give is get a hobby and come to a place where you can accept . Believe me all people on fibro site know pain sand lots of it , your not on your own . Not all fibro is equal some people with it can manage work and some like me had to retire early . It's no good letting it take over because you will have no life , I understand because I have been in your shoes and I looked to the future and wanted to die .But I didn't I got married to a wonderful man , had three children and four grandchildren , there were times when I was in agony but I cracked on . I'm blessed. yes I'm in constant pain and it's hard , let's hope you don't have to wait as long as I have for a cure . I hope you take what I have said in the love it's given so you don't have to wait sad long as I did to accept it for what is in .Come on you can do it xx

[lCllCl6]

I agree with everyone stay active the best thing for fibro. If you don't then the pain n meds will get the best of us all. Hang in there and hold your head up we are all here for each other.

I make a coconut oil rub it has beeswax in it and it helps me control more of my pain. Plus I keep active I cannot give up and I am working on getting a life back.

[TheAuthor]

Hi Poppetts

I am so genuinely sorry to read of your suffering and struggling and I can see that you have been given some absolutely brilliant post replies so I will sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[Poppetts]

Thank you may just try that take care thank Debbie x

[Poppetts]

Thank you to everyone for your wonderful advise and kind words I'm so glad I joined wish you all a pain free night and some sleep lol Debbie xxxx

[Poppetts]

Hi everyone so here I am again I took every ones advice and just do my best make sure I achieved something every day no matter how small or big the choir is....I'm very into gardening this year has been a struggle I must say...you just got to keep going my doctor put me on martazapine for my depression and i can honestly say that it's a miracle I sleep every night now and am awake all day...I spent 5 years up all night and stayed in bed all day....even thoe I have to rest a lot I do things inbetween..wish you all a pain free weekend x

[Poppetts]

Swimming is the best but I get what you mean about cold water I find that is the only time I am pain free. If I could get a job as a mermaid it would be great lol. Having great difficulty walking today the winter sadness has started...have a good weekend zoonie. Xxx

[Poppetts]

I'm addicted to garden lights lol. 1 to 3 miles that's amazing I can just about walk round Morrison's lol x