I hope you are all safe and well. I have, I think had the fibromyalgia since surgery on my spine 5 years ago. Really hadn't heard of it, only when looking up on google my latest symptoms, the word Fibromyalgia would pop up but didn't really take any notice.
Well it certainly is a life changer. For me I find the hardest thing to deal with is the frustration of not being able to do things that before I would fly through. The chronic fatigue is awful and some days I feel that I can't do more than just sit.
I have been helped a lot by counselling from the pain clinic who really do understand. My GP usually looks to the stars when I walk in. Lol.
Have just had my PIP assessment which has left me feeling like a liar and a fraudster. On the up side my work capability assessment went in my favour and the reduction of stress has helped.
I have worked since I was 16 and find it hard to ask for financial help. I had to give my shop up a couple of years ago, I just couldn't keep going. I still have family at home who need me to be there, its a hard enough balance when you are fit and well, but this, well I take my hat off to those who manage both.
I have been reading posts from you guys for a few weeks, my counsellor tells me to be kind to myself, hard when you have been the one dishing it out to everyone but yourself. But as time passes, I think she is right. Life can be tough I have learned to live with less and am trying to be as fulfilled as I can be. .....well thats me really.... sending love.
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Freddie20
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hi and a warm welcome to our community. Here you will find information, support, friendship and laughter too. You will find more general information on fibromyalgia on our main website fmauk.org
Hi Freddie I can relate so much to your post your not alone 🥰
Thank you Panda1968 its really hard isn't it. I keep a lot of what I feel to myself I think everyone is fed up with hearing about every pain and how tired I feel. I find I am very sensitive to the medication and tend not to take it unless I really have to.
I am exactly the same Freddie then I get annoyed and upset with myself and angry with people who say you will be fine next week 😡 I now take my medication regularly and stick with it because it does work more than it does not 🥰
I have just been put on Duloxetine from citalopram, it has helped with all the niggling pain, but doesn't help with the tight muscles. My family something say things like just go for a long walk🤣 I have learned to just ignore. Its the frustration of not being able to have the life I had. I want holidays and outings without pain. What medication are you on if you don't mind me asking.
I guess its about finding a new life. I'm not moaning I know i am fortunate. But well you know. Xxx
I am on citalopram, Pregabalin, Amitriptlyn 60 mg (excuse the spelling) and cocodamol I came off everything and the pain went to a 10 after the detox of drugs it’s now an 8 ok so not much difference but enough I don’t want to increase my meds I would love to give natural remedies, the tight muscles I agree are sometimes unbearable but currently at the moment I feel like I have burnt the right side of my body and some little person is hammering nails into my toes lol oh and I have already fallen over twice today but I just sit there laughing because I would cry I actually look demented 😳🤣
We are all entitled to have a moan Freddie if it makes us feel better, and we have both had a good go this morning lol sending lots of hugs 🤗 🥰
I talk to the lovely lorna who is a counsellor at the pain clinic she has put me on to mindfulness. Don't laugh. 🤣 look on YouTube at Vidyamala Birch. Crazy but it really helps.
I need help with sleep, and maybe I should give the meds another try.
Tell the trolls to leave your toes alone little whats its.
Rest and watch a good movie . Take care of yourself. Big but gentle hugs. Xx
What an amazing name going to give that a look I won’t laugh have done meditation for a few years now it’s when people started annoying me lol 😂 find it really helps plus gives me an excuse to go sit on my own for an hour lol.
I know just what you mean about caring for others. I think many sufferers are in a caring role of some sort and tend to be 'givers'.
I only started to get control over my Fibro (though I still have good and bad days), when I started being slightly selfish. I started to say "No" occasionally and now only do what I feel I can, when I can. We tend to be people who will push ourselves to our limits and so I only do that if there is an urgent need nowadays.
It has taken me several years to learn how to pace myself and to be kind to myself. It requires a new mindset and we are creatures of habit!
For me, the lightbulb moment came when I learned that Fibromyalgia is essentially caused by damage to the peripheral nerve endings. (According to several different studies in different countries). This is now thought to be associated with high stress hormone levels, which can be caused by continued high stress situations without a break or major physical trauma. In effect we are running on 'empty' as far as our bodies are concerned. This all started to make sense to me and explained why the symptoms are so varied - it depends where the nerve endings have been damaged.
For me the stress came from looking after and then giving end of life care to several relatives for a decade - with no break. I was also trying to run a business... So your experiences resonated with me particularly and the fact that it started after your operation also fits.
I've learned that looking after myself first allows me to help my family more in the end as I'm useless to them when I have a flare up.
My son has been diagnosed with Chronic Fatigue Syndrome recently and we are of a similar make up in our need to push ourselves. So we now swap notes and tips and are able to help each other. The conditions are so similar and some specialists think they are the same condition. I suspect myself that they are related conditions and just that the pain is worse in one and the fatigue in the other - same illness manifesting itself in different ways, depending on where the damage has taken place.
So yes - please learn to be kind to yourself - it is worth it in the long run...
Omg I have just typed a whole reply and lost it🙄 lets start again.
Thank you so much for your reply and insights i agree with what you say, i believe that most disease is caused by stress in our bodies, we have not changed much but our environment has.
I am so sorry to hear of your family, it is so difficult seeing the generation that has played such a big role in our lives fade. I went through it with my cousin and her parents. It was so sad. And like you say life outside of that has to go on. Good job women are as amazing as they are.
My husband left us when our three children were young, my youngest was 7 and the eldest 12. So as well as managing their fears and heartbreak , I had to hide mine (which I didn't do very well) i think I might've had a breakdown, but just kept pushing through . I had worked upto having the children, so that was another hurdle. I tried to start a business around the childrens school times , you are never not on full alert. I did apply for office work but I was 45 and not been in an office for 12 years. Nightmare.
Anyway, after bejng pulled around injected and alsorts of hideous treatments, I had surgery to relieve the pressure of a collapsed disc. Everything came to a head and things just got worse wish I had never had the surgery, can barely walk any distance now without pain.
I sometimes think is this really happening to me. I was so fit and did so much. I guess in the end if we dont give ourselves and our bodies what we need, love and calm then it will turn round and make us be still.
My local job centre were , I have to say, amazing and kind I cannot fault the treatment they gave me. I have as my daughter says been written off and no longer have to apply for work, the stress relief this gave me was so great after having to struggle Financially having not worked for a year.
I have asked PIPfor a mandatory reconsideration after the review kept the pip the same, basic living. I am grateful for all the help the government give, I know we are fortunate, but I really need help with my mobility, I cant be without my car.
Like you I have a beautiful son, who is sensitive caring and gives himself a hard time. I really worry for him in this aggressive world of over achieving and materialism.
I will try and be kind to myself as I am to others. Its hard though isn't it 🤔.
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