Fibromyalgia Is Destroying Me - Fibromyalgia Acti...

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Fibromyalgia Is Destroying Me

Fibroguy66 profile image
76 Replies

Cannot put really into words how I feel anymore.In 1996 I was electrocuted in a terrible accident which was not my fault whatsoever.

The outcome of this was I died.

But being thrown backwards with the immense voltage I was forced backwards down a flight of concrete steps which smashed my lower spine to bits & my upper spine to.

Luckily someone with Medical experience gave me hands on CPR & bought me back.

Unfortunately there is no operation to repair the damage ever.

Spent along time in a wheelchair then slowly upon slowly I taught myself how to walk again after along long time.

So today all these years later,I have fibromyalgia, chronic pelvic floor nerve pain,crushed up spine, prostitus amongst other medical issues etc.

The private health care sector has told me everything is so complex etc.

Soon I am going to be trialled on a new type of pain patches,so I'm hoping they will work,but like all new stuff they have side effects (feeling scared actually)

Really feel a burden in life & useless to all around me etc.

If you knew me in reality I am kind,caring & loving & understanding.

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Fibroguy66 profile image
Fibroguy66
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76 Replies
Juju1971 profile image
Juju1971

Hello my lovely, I really don't know how to reply to you, your story made me cry, so all I can do is wish you much luck with the new patches I hope they can give you some relief. Remember you are not alone, you are strong!! Sending you gentle hugs and love x

Fibroguy66 profile image
Fibroguy66 in reply to Juju1971

Thanking you most kindly

Gigiruth profile image
Gigiruth

Hi FibroguySorry to hear you are in such pain, it sounds so hard. It has been years of suffering and you sound weary.

When we find we can do less and need the help of others we can feel useless.

You know you are a kind,caring,loving and understanding person, try to be those things with yourself as well as others.

Sometimes we feel measured by what we can ( or cant) do. There is much value in kindness.

I hope you can reach out on bad days. Andys man club offers support where you can also help others.

I hope your new meds help.

Take care of you

Gigi

Astonvilla68 profile image
Astonvilla68

wow what a story! I got really emotional reading it. Please do not feel like you’re a burden. You didn’t choose to be electrocuted. if anyone makes you feel like that they have no idea how you feel and what you’re going through. This is a huge mental battle .In the UK We have pain management courses that teach you to process things different mentally. Maybe that might help CBT. good luck sending Hope, positivity and understanding.💪❤️

Fibroguy66 profile image
Fibroguy66 in reply to Astonvilla68

Thanking you kindly

Onceabiker profile image
Onceabiker

Just have a man hug.

Fibroguy66 profile image
Fibroguy66 in reply to Onceabiker

Thankyou for your kind words

Gkb642023 profile image
Gkb642023

Aw Fibro guy, no wonder you feel so bad, but remember how far you have come. You sound amazing to me. I do hope you get some relief. Fibro is just so relentless. All my best wishes.

Fibroguy66 profile image
Fibroguy66 in reply to Gkb642023

Your welcome 🤗

geminilady profile image
geminilady

Aww Fibroguy66, that was a hard emotional read and i feel so sorry that you are suffering. You will have down times with this horrid Fibro, but try to hold on and remember just how far you have come since your accident. You dug deep and found the courage and strength to teach yourself to walk again. Try to find some of that strength again to see you through these hard times when Fibro tries to drag you down to rock bottom. I hope the pain patches work for you. Stay strong, come back here for support and know you are not alone, we all feel for each other when we are having a bad time and try to offer comfort and support. Good luck to you and a gentle hug coming your way.

Fibroguy66 profile image
Fibroguy66 in reply to geminilady

Thanking you kindly

Lobster27 profile image
Lobster27

I'm so sorry to hear what happened to you but at the same time a light went off in my brain. You mentioned chronic abdominal nerve pain I think you just solved my issue. I've had every test under the sun for my abdominal pain and no conclusion. Thank you for sharing.I'm in constant pain and the abdominal one is so debilitating.

Thank you so much keep safe take care

Fibroguy66 profile image
Fibroguy66 in reply to Lobster27

Your welcome 🤗

Fibrofibrofibro profile image
Fibrofibrofibro

That’s brutal. For you to have got this far and still be trialing patches is incredible. I have to wonder what is it that keeps you motivated? Is there family, an absorbing interest in a facet of life, a devoted pet, supportive neighbours/friends/healthworker/dr … or sheer determination?

As an onlooker when my husband is in the depths of pain I feel so helpless and find little helps him. I am grateful for his gallows humour and similar taste in tv/films to try and distract him. Drs have offered to take out his bladder (IC) …

I hope these patches give you enough relief to enjoy your interests and if the trial is successful your persistence will have helped so many others.

Thank you for sharing. Thinking of you x

Fibroguy66 profile image
Fibroguy66 in reply to Fibrofibrofibro

Thanking you kindly

emoor528 profile image
emoor528

hi there. So sorry to hear your awful situation. I hope the new treatments works out for you. I have ketamine 1 every 2 months. This relieves me a lot for about 6 weeks so do you happen to know what the new patches are called? Take care.

Christinepr profile image
Christinepr in reply to emoor528

I would also be interested in knowing what the new patches are called as I don’t think mine are helping much any more. I find my best help is my antidepressants.

Fibroguy66 profile image
Fibroguy66 in reply to Christinepr

HiJust put the pain patch on actually a minute ago for the first time ever ,so in for a penny in for a pound.Bit scared but to be expected.

They are morphine I can tell you.

Pharmacy keep them in there safe under lock 🔐 and key as there a CLASS A drug & you have to sign for them

Thankyou for writing means alot

JAN663 profile image
JAN663 in reply to Christinepr

I was on morphine patches helped a bit till my pain got worse now on strong pain killers tried everything pain is so bad some days I can't move out of bed

Fibroguy66 profile image
Fibroguy66 in reply to JAN663

HiOnly day 2 for me,so hoping I may see alittle change in the next week or so because this is my last resort now 😔

Woodwalker profile image
Woodwalker

Just sending lots of best wishes and hopeful thoughts to you

Fibroguy66 profile image
Fibroguy66 in reply to Woodwalker

Thanking you kindly

Wordsearch1 profile image
Wordsearch1

What a terrible thing to happen really hope the new pain patches work take care

Fibroguy66 profile image
Fibroguy66 in reply to Wordsearch1

Just put the pain patch on actually a minute ago,so in for a penny in for a pound.Bit scared but to be expected

Thankyou for writing means alot

FibronewbieJab profile image
FibronewbieJab

Hi Fibroguy66. I cannot truly understand how you are feeling, as I although I have Fibro and other issues, they are nothing compared with what you are going through. But there is one thing I do know, your friends and family would rather have you with them than not. I am sure they don't think of you as a burden, and they would be truly broken inside should you not be there. Keep on going, as you would leave a big hole in their lives.

Fibroguy66 profile image
Fibroguy66 in reply to FibronewbieJab

Thankyou for your heartwarming reply

KaliAka profile image
KaliAka

So sorry to hear of your accident. You have done so well to get to where you are today. I hope the patches work.Stay with a positive mind.You are a fighter that has been proven .Set small achievable goals to work towards .

Don't have thoughts of being a burden because you then will be .Stay focused on these goals. Write a positive affirmation every day on a note sticker and place somewhere to read every day. This will help you to stay focused.

You are doing a fantastic job recovering from a horrific accident .

Find some friends to help with your goals. You got a second chance that's definitely something to work towards your goals in life.

Fibroguy66 profile image
Fibroguy66 in reply to KaliAka

Thankyou for your heartwarming reply

denny_the_wench profile image
denny_the_wench

🤗 Gentle hugs to you

Fibroguy66 profile image
Fibroguy66 in reply to denny_the_wench

Just put the pain patch on actually a minute ago,so in for a penny in for a pound.Bit scared but to be expected

Thankyou for writing means alot

Maud-ie profile image
Maud-ie

No words to express how deeply I feel for you. Your mental strength is amazing and I am humbled by your struggle. Keep on going - truly hope the patches alleviate some pain. I use 10mg Butec pain patches which reduces pain to a fair degree but I only have Ankylosing Spondylitis and fibro and nothing as awful as your injury. Sending hugs (gentle ones)

Fibroguy66 profile image
Fibroguy66 in reply to Maud-ie

Thankyou for your heartwarming reply

Fmok profile image
Fmok

Hi I too had an accident that wasn’t my fault back in 1987 spent 6 months in hospital had to learn to walk again so I can sympathise with you I have constant pain but I try as much as possible to keep going it’s so easy to feel useless and with that comes depression and anxiety and a whole lot of other problems have they told you what kind of patches you will be trialing and what is in them I am on butec patches try to think positively about the future take care

Fibroguy66 profile image
Fibroguy66 in reply to Fmok

Thankyou for your heartwarming reply

keokar profile image
keokar

Hi fibroguy 66, sorry feeling like there's no tomorrow, and everything is hard for you around you. But your not a burden, or a nothing, you are a person at the end of the day, with a heart, like anyone else, and feelings and emotions, that matter. Fibro is a horrible illness, hard to understand for you, and others, and hard to put in words, how it feels to live daily with it. Fibro taken years from me, brought hurt, anger, pain, confusion and much more. The world isn't as kind as was, but should be, and realize we are human and deserve a life of happiness and wellbeing and love. So you take care from a fibro warrior, you are worth it, and no burden. x

Fibroguy66 profile image
Fibroguy66 in reply to keokar

Just put the pain patch on actually a minute ago for the first time,so in for a penny in for a pound.Bit scared but to be expected

Thankyou for writing means alot

keokar profile image
keokar in reply to Fibroguy66

That's ok, you take care of yourself. x

Nipper11 profile image
Nipper11

I need to tell you are a strong warrior with such great courage and confidence to go through such a horrible experience. 😢 well done for getting this far. There's a large piece of you that has worked so hard to push back your illnesses and control your life in new ways. You are the shining stars 🌟 everyone reading your words can feel that.

Please don't give into what's going on in your mindset. Speak to the talking therapist they are there to support you. Look at your local community website to complete there form on line to apply for help. I know things have been so hard for you, however look at what your body has done to walk again with such motivation is outstanding .

things will improve with your determination and hold on tight to life and Continue making your plan to be in control . You and your body are truly outstanding . and I feel sure others around you are very proud of what they seen you achieve . Be kind to yourself because your worth fighting for. With big hugs and positive outlook you will overcome more of your symptoms because you already have hit so many goals in the last few years . 💖 take care xxx

Fibroguy66 profile image
Fibroguy66 in reply to Nipper11

Just put the pain patch on actually a minute ago,so in for a penny in for a pound.Bit scared but to be expected

Thankyou for writing means alot

Krystalyst profile image
Krystalyst

Your amazing to have coped with your accident and also living with Fibromyalgia,hope you find the pain patches helpful Warmest wishes to you

Fibroguy66 profile image
Fibroguy66 in reply to Krystalyst

Just put the pain patch on actually a minute ago,so in for a penny in for a pound.Bit scared but to be expected

Thankyou for writing means alot

Shihtz6 profile image
Shihtz6

so sorry to hear how you are suffering, i hope the pain patch helps, i am in the last stages of peripheral neuropathy and i am on a 7 day 10mg BuTec patch, it does help for a short while, please let us know how you get on with the medication,I wish you well.xx

Fibroguy66 profile image
Fibroguy66 in reply to Shihtz6

HiStay tuned.

Will let you know what affect or affects happen.

Thankyou for writing it means so much really

Kindest of regards 🙏🏻

honeybug profile image
honeybug

Hi Fibroguy66 😊🌿🌸🦋

I’m sooooo very sorry to hear about your dilemma.

I just said a special prayer for you and hope your new pain patch gives you relief without side affects.

Wishing you well in all things.

Sending you gentle hugs my friend.

Love and prayers

EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

Fibroguy66 profile image
Fibroguy66

🙏🏻 & faith mean alot to be.Thankyou for keeping me in your thoughts

Kindest of regards

SusieSquirrel profile image
SusieSquirrel

Oh Fibroguy66, I'm so sorry to hear about the trauma you've suffered. Its been a long time in pain!I think we all go through stages of grief. The life we used to have, the sometimes terrible pains we go through now and the burden we think we are putting on loved ones who care for us.

Its hard to know what to say really.

Make sure to talk through all side effects with your consultant. Hopefully this might be the drug you need.

Fibroguy66 profile image
Fibroguy66 in reply to SusieSquirrel

Hope these pain patches will work in some way.Thankyou so much for writing.

Means so much.

Kindest Regards

Dreamgreen profile image
Dreamgreen

Hey Fibroguy66, so sorry to hear of all you've been through.You have a real inner strength & to be kind, caring , loving & understanding are precious gifts, I doubt anyone would think of you as a burden.

I do hope you find some relief from the new patches.

I'll remember you in in my prayers.

Gentle hugs🤗

Fibroguy66 profile image
Fibroguy66 in reply to Dreamgreen

Thankyou so much for your kind reply.Please keep me in your prayers 🙏🏻

Kindest Regards

JAN663 profile image
JAN663

Hi sorry hear about your accident and the terrible pain your going through I felt the same I went see a counsellor who helped me with my pain hope patches work for you wishing you all the best

Fibroguy66 profile image
Fibroguy66

Thanking you kindly

Bluenomore profile image
Bluenomore

So sorry to hear about this. You sound like an incredibly strong brave person. Not everyone would have found the courage and strength to learn to walk again what an amazing achievement. Fibro can give us all some disheartening times and it must be very difficult with your other conditions adding to your pain. I wonder have you tried meditation there are many free apps you can download on your phone. Sometimes for some people this can help to be more tolerant of our pain and relax the mind and body which also helps with pain. Wishing you good luck for the trial I hope it helps . Take good care of yourself and be kind to yourself .

Gaye1963 profile image
Gaye1963

What a lot you've been through. I'm so sorry. I sincerely hope that the trial is a big success for you. Hope you'll let us know how that works out for you.

Fibroguy66 profile image
Fibroguy66 in reply to Gaye1963

Time will tell hopefully Kindest Regards

Mandy_lw profile image
Mandy_lw

My heart goes out to you. It's painful enough living with fibromyalgia let alone all the additional things you have to put up with. If you can keep your spirits up along with a sense of hope and humour, you will eventually find a new and equally purposeful way of life. Try to procure up-beat and like minded friendship groups if you haven't already done so.

Fibroguy66 profile image
Fibroguy66

Thanking you kindly

Fibroguy66 profile image
Fibroguy66

Thanking you kindly

Sjmiji profile image
Sjmiji

You sound like a nice person in immense pain... Hope that medication works for you.

Fibroguy66 profile image
Fibroguy66 in reply to Sjmiji

Thanking you most kindly

Fibroguy66 profile image
Fibroguy66 in reply to Sjmiji

I'm am a good person & have always been helpful to all.But when your ill,others tend to walk away.

Maud-ie profile image
Maud-ie

How are you managing with the pain patches?

Fibroguy66 profile image
Fibroguy66 in reply to Maud-ie

HelloDay 3 & not noticing much difference at all to be honest.

My specialist team say that my pain is complex.

westcountry profile image
westcountry

So sorry to hear what you're going through. Definitely don't feel like a burden as there's always something to contribute but just in different ways when we're immobile. I will add you to my prayers as that always helps me having faith.

Fibroguy66 profile image
Fibroguy66 in reply to westcountry

Thankyou for your kindness and prayers.I'm trying to stay strong 💪 but the mountain 🏔️ is a tough one to climb

wheezybronch profile image
wheezybronch

Hi, sorry for your situation. In my mind, (I am not a doctor) the only patch I imagine can help you is a high dose fentanyl patch, there are side effects but you may not experience any of them. I used to have high dose Fentanyl patches, I stopped them voluntarily, now I cannot start them again, I would have to be in palliative care, I'm not! I am waiting for a pain clinic appointment, where I may be able to have them reinstated. I hope these patches they suggest prove to be effective, the best of luck to you, don't give up, tomorrow may be a better day!

Fibroguy66 profile image
Fibroguy66 in reply to wheezybronch

Thankyou so much for your kind words.Hope my patches work but no improvement yet.

Time will tell I guess.

FrostGyre profile image
FrostGyre

Hello Fibroguy.

I'm a big believer in the healing power of meat. When you exclude everything except meat, fat, salt and water: the magic happens. It's not going to fix your spine, but I believe it can improve and even eliminate your other conditions.

Any questions, fire away.

-Chris

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to FrostGyre

You appear to be preaching a single course if action and from your posts across forums it does not appear you actually have fibromyalgia. This is a support group for those with fibro and not a campaign site for any pro diet options.

Jugglinglife profile image
Jugglinglife

Sending lots of love I do hope you get some ease very soon xx

Fibroguy66 profile image
Fibroguy66 in reply to Jugglinglife

Thanking you kindly 🙏🏻

Bacaloca profile image
Bacaloca

💜

Fibroguy66 profile image
Fibroguy66

Thanking you kindly

1499 profile image
1499

Hi! you have been through so much but you have conquered so much also by learning to walk again you have been amazing! It is so sad you are suffering so badly and I am sure so much worse than many of us, myself included. Many of us with Fibro along with our other conditions get so down also with not getting out, living in pain , and feel we are no use to anyone at times either when we were used to being so active for most of our lives and doing for people . I can't even imagine the extent of your pain and I do hope please God that these patches will give you some relief and life will be a bit more comfortable for you. I know a friend who was bad with M.S. and his M.P. fought to get him onto Cannabis.

I feel it should be a first line treatment in many illnesses and tried first with cancer patients especially rather than having chemo with the bad side effects as chemo can also cause cancers. I did ask a Pain Consultant about this but he advised they weren't sure about the dosage or had enough research to go on but this was a few years ago. I did see a UK Doctor online talking on a seminar saying they knew how to treat people with cannabis. It should be widely prescribed I feel as it gave my friend relief. He had been in a wheelchair since his 30s. If tried and patients dont feel cannabis is helping then they could try other options. We are all so different and react differently to medications but hopefully you will be able to cope well with the patches. God Bless you sending hugs x

Fibroguy66 profile image
Fibroguy66 in reply to 1499

Thankyou for your kind words

1499 profile image
1499 in reply to 1499

Your welcome!

KimiJay profile image
KimiJay

Catching up on my emails and completely shocked to hear about your accident here FBG. Utterly horrific! So sorry this happened to you. On a physical level, I wonder if remedial massage would help at all. Not physio. Remedial massage is different.

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