Fibromalgiyaa : I'm struggling day and night it... - Pain Concern

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Fibromalgiyaa

Rabs550
Rabs550

I'm struggling day and night it's taken over my life was diagnosed with fibromalgiyaa is anyone else experiencing the same all over body pain

34 Replies
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my wife was diagnosed with this and was proscribed PREDNISOLONE, What a nasty medicine. Yes it stopped the pain but the lenght of treatment and all the side effects she wonders if it was worth it. Once sterted on a course of these tablets you cannot just stop. My brother in law is still taking them 4 years on think carefully before taking

Rabs550
Rabs550
in reply to colinputman

Hello did you say your wife is also suffering from fibromalgiya?? And she's was given prednisolone?? Was it for the pain?

Would it be safe for her to slowly wean off the steroid? Look into it. Good luck. Long term steroid usage may be dangerous.

In the US fibromyalgia is classified as a psychological disorder which can be overcome .I suggest buying a book called Unlearn your Pain by Dr Howard Schubiner. He explains this very well. They even have a pain psychology center in Los Angeles where you can get counselling for pain disorders which have cured many people. You can get it via Skype or What's App where ever you are. Look up an App called Curable .They will help you too

Fuck right off

Hey I just wanted to know why did you comment fuck right off please reply as I would love to know the reason because I think I'm thinking the same thing??

As many Fibromyalgia sufferers will tell you that calling it Psychological is far from the truth

Yes I know and thank you

cmg1956
cmg1956
in reply to Sgoodwin70

As a woman who has battled this insidious illness for more than 35 years now, I would love to second Caponesshadow’s comment!! I’m quite certain that if it could be psychologically “cured” I would have taken care of it Decades Ago! I pray each day for something/someone to Truly care enough to Finally give FMS and All neurological diseases the Respect they deserve. Anyone who is so limited in their thought processes to actually believe that this is not a physically, mentally and spirit crushing debilitating illness is on point, well, they are sadly mistaken and need to get the Real story from those of us who actually live it Every Day of Our Lives...

I totally respect the pain and suffering of others, whatever it may be. Can’t we get some of the same for ourselves?!

Rabs550
Rabs550
in reply to cmg1956

Hello there I just wanted to know Is it fibromalgiya that you suffer with? And as you said you have been suffering with it for 35 if you don't mind can you tell me a little more about how is was and how it is now and is the pain still the same and how do you cope thank you 🙏I can imagine what you must go through I mean I got diagnosed in 2017 with fibromalgiya until today I still don't understand can the pain be this bad that you actually can't walk some day please I would love to hear how you deal with the with the pain xx

Sgoodwin70
Sgoodwin70
in reply to cmg1956

I absolutely agree with your comment ..its a terrible disease and pain will rob you of your joy your identity your peace your livelihood everything that healthy people take for granted.I know this to be true .

I recommended this approach and book because I know a lady who had severe full body CRPS that bound her to her bed and forced her into a wheel chair .She had been to countless pain specialists and she had tried to keep him in nerve blocks bisphosphonates therapy strong medications everything known to man. But nothing helped her. So as a last Resort she tried something called the mind body syndrome approach by reading books by Dr John Sarno initially and then following a series of psychological therapy which helped her recovery. It was a long and tortuous approach but now she lives a life pain-free.

Story is inspirational I'm so I thought it would be worth to mention it on this site to see if it might help other people. Everyone is different but I know what pain is like it's real and the suffering is real. I suppose this isn't something that is typically approached in this way certainly in England

RobbieT
RobbieT
in reply to cmg1956

I couldn't agree more. As a fibro sufferer, I find it a constant battle to stay on Durogesic (fentanyl) patches. I'm on the lowest dose, follow instructions, don't abuse it etc - yet every time I visit my GP or specialist they suggest I try to leave the patch on an extra day or try something else. They have seen me at my worst when they took me off it but by my next visit (when put back on), they have totally forgotten the agony I was in. Now they are sending me to (another) pain clinic - which naturally will cost a small fortune. At 64 years old I don't need the extra stress. The fentanyl has actually allowed me to leave the house. Let me LIVE a little!!!

Rabs550
Rabs550
in reply to RobbieT

Hi hello why do you agree to take off especially when the fentanyl is helping you?? The pain clinic told me many times and one doctor even made me take it of straight away which you shouldn't do anyway it's all really in ur blood stream if you take it off straight away you get withdrawal side effects they made me do the same once omg that night I wanted to die with the pain unbearable my 18 year old straight away made me put it on an wat a relief If you need th to manage ur pain take them don't listen to anyone yes I know people die by abusing it etc but only take what you have be piscribred. As for me from that day on I will never take it off even tho my pain clinic always says try to reduce it no to be honest I don't know how many more people feel like me but I die everyday with the pain extreme pain can't walk cry emotional depressed it's taken over my life I rather die with it on then die with more pain everyday either way we die with pain so why not stay on fentanyl as it helps I hope you feel better do what you want x

RobbieT
RobbieT
in reply to Rabs550

I have to get special permission to get the script. I see my doctor who then rings somewhere & provides my details. They then give permission & I take a script to the chemist. (This is in Australia.) They have previously taken me off it and, like you, I suffered massive withdrawals. It's very difficult finding a doctor who will actually prescribe it. And there are not many doctor's where I live.

Take care & try to keep positive. So hard, I know. Luv RobbieT

Rabs550
Rabs550
in reply to RobbieT

Thats so sad are you from Australia?

RobbieT
RobbieT
in reply to Rabs550

Yep. I live on the mid north coast in NSW.

Rabs550
Rabs550
in reply to RobbieT

I would say just keep trying until you get some help I know the feeling when ur in pain it's so hard

RobbieT
RobbieT
in reply to Rabs550

Thanks for you kindness & compassion. We are in this together & its a reluef to be abke to share. Much love. xx

Rabs550
Rabs550
in reply to RobbieT

Keep going back to the doctors I'm from UK and they also have tried telling me to slowly reduce and said no way I use it the way I have been told every 72 hours please go back and say its unbearable I'm sure they can do something wish you luck xx oh forgot BTW is it 12mg??

hi there i am the same as you every bone in my body hurts from trying to get out of bed its terrible nobody knows the pain i have wanted to give up a few times ive been stopped smoking now 15months and i have never felt so ill my skin is dry i used to have lovely nails my hair is limp all this as happened since i stopped also weight has crept on i was to have a hip replacement the day they stopped all ops i really could of picked up a cig then but i didnt so i know how you feel and i cant see no end to it please somebody tell me the magic cure sorry long winded just had to get that off my chest

I love that we can unload here. I know I am not alone. 💜❤💛💙

I am the same I think it could be all the stress of the virus and the lack of excercise I hurt every where and feel like I have twisted the entire bottom part of my body just endless but I am trying to get by this time by telling myself it has been like this before and has passed so is only temporary it does help but I know how you feel you are not alone as I am sure many here will feel their fibro symptoms a lot worse xx

Dont listen to the bs about it being Psychological thats utter crap. I was diagnosed with Fibromyalgia almost 4 years ago and its knackered my life i went from working 80 hours plus to barely being able to walk 200 yards to the shop. Fibromyalgia is usually diagnosed when all other things are ruled out, check out the 18 tender points pain usually radiates around these areas.

Try not to make negative comparisons about what you could do before and what you should be doing and see every goal as a achievement. Fibromyalgia affects people differently some are able to work through it, some only part time and some are crocked completely.

There are several ways of distracting yourself from the pain mindfulness, meditation, jigsaws and lots of other things can help distract from pain from whatever suits your needs.

I was just thinking the same thing he atually made me feel very angry we are not crazy and yes you are right I've been diagnosed with fibro in 2017 and I know how you feel from walking many hours a day I can hardly get out of my bed now with servere pain day and night like a book can really help with pain are you on any treatment? And is it helping you in anyway

Unfortunately there is no cure as such so im on a huge concoction of meds, i came off naproxen as it gave me IBS such a horrible drug and currently working with an addiction dude to try come off Oxycodone. Some days i can feel ok then push myself and suffer for days after, its all about pacing on those good days and not pushing your body too far, evrything can be adapted to ease your pain ie; sometimes a pillar between your legs whilst you sleep or slightly raising your bed. I was lucky Bradford, west Yorkshire have a great NHS service called Living with Pain it surrounded me with others in the same boat as myself and helped me swap ideas about what worked and didnt, maybe you should look into something like this in your area

Thank for the information I definitely will there are quite a few places here and I will atually Google it today and its good to feel positive xx

Delzek
Delzek
in reply to Rabs550

Please never Google an illness, I know many who have and they honestly believe that they have other issues they never had prior to research, I am in constant pain not only from my back but also every joint in my body! Hence I have been awake all night. I qm on Zomorph, Oramorph,and many other drugs including Diazepam, takes the worst of the pain away but not all of it! I have Diverticulitis among many other ailmenrs, I am not a Bible Basher(I think that is what they are called?) But I do think having a Positive Mindset can help, although I rarely do have a positive mindset. Fibromalgia has been mentioned in the past but now I have a definitive diagnosis I am a little happier.

I can understand the anger of the early response. I began with FMS in '84 when no one had heard of it. No one believed it existed. I was told it was psychological more than once. I taught as a professor but couldn't get up the steps. After a class I had to get a student to turn my steering wheel because I couldn't get out of the parking spot. I was in terrible pain and the fatigue was just as bad. I went to the Mayo Clinic and even they didn't know. That was after numerous tests. They, too, suggested it was psychological. I thought if it was this terrible, my mind, I'd check into a mental hospital and I did. I had a psychiatrist from India and she was amazing. After three sessions, she said You have Fibromyalgia, explained it to me, and put me on a medication no longer in the U. S. Brand Name. Within a short few weeks, I couldn't believe the transformation. I was able to not only walk, but eventually began running and mountain cycling. Then they quit making the med. In the meantime, the generic gave me seizures because of the "dirty fillers" as one doctor said. A specialist in FMS.

Meditation didn't help. Biofeedback didn't help. I did yoga, meditation nightly. Then, in the current time, perhaps what began in one way moved; I now have other autoimmune diseases, RA, Lupus. I hurt everywhere and take enough med. to keep it so I can do labor, caring for a rescue horse and donkey. A home. A life. Writing books. But if I miss the medication times, I can't move. If I didn't have them, I wouldn't be able to ever get out of bed.

My doc says if he took what I take, he would die. I believe him. But my body needs it for pain and believe me, we all wish it were only in the mind (and not the brain, CNS, joints, fascia, etc.) But there is a difference between the mind and the body no matter what we'd love to think. Otherwise you could cut yourself with a knife and heal it instantly! Get kicked in shin and feel nothing. How wonderful it would be. Yet, keeping calm and looking at, reading, listening to beauty is still soothing to me.

Thank you for replying and so true with what you have said since 2017 I've been in pain on and of and trust me I understand what pain is I have 3 children ones just turned 18 and she's not stupid she knows as soon as I'm a little good she's like you don't have much pain do you today? So tell me how is it impossible to be in our head I've been on several medicatioqn and now currently on fentanyl morphine tramadol duloxtine amytrampline drys eye drops under active thyroid and so on its taken over my life and yes who should have mental problems especially when you can't get off ur bed before I used have few good days and bad days but since the covid 19 over 2 months now I'm on servere pain and struggling every night cry myself to sleep and consent pain is killing me I can hardly stand or walk I lost all my confidence my friends and I feel lost and lonely since fibro any advice what can help and what was this medication you was given that worked like a miracle do you still take it thank you for replying

Well said!! It's a pretty painful, lonely & frustrating fibro journey. Not to mention other condtions we suffer. (For me it's asthma, migraine, hernia, diverticulosis, sciatica, scoliosis, lumbar disc bulge, oesteoarthritis, lupus, reynauds...) But here we are together. And that's at least one small positive 😊.

I am so sorry. I raised children, then one alone, while I was in terrible pain. You do not have the right combination of meds. They are mostly afraid to give what you really need. I was lucky to find a pain clinic that really helped me. I am so sorry that you are going through this. I know how it feels when I wake in so much pain I can hardly reach for my meds. beside the bed. There have been times I thought of suicide but I have so many depending on me that it left my thoughts immediately. But yes, I can also, like your daughter, see pain in the faces of other people, and see their fatigue. At one time, I couldn't even force my facial muscles into a smile. I take a large number of meds also. There is always a large underneath pain feeling however, keeping me aware that it is still present. And late for meds because I am someplace and forgot to bring them along, and I am in a terrible state. I tried tramadol once and it is nothing. One of my support people varies using it with hydrocodone (Norco) and it seems to work. Also, you HAVE to sleep. Maybe you can ask for ambien or something that will help.

My care and warmth to you.

Thabk you for replying back and yes I feel just how you feel suicidal thoughts and so on and yes also the medication no mater wat I take nothing for first I was thinking is it only me but after reading articles on here I realised that there are many people like me. I'm so depressed at the moment as nothing seems to work I don't know what to do and I have to stay alive for my children but the pain kills m me more and more each day thanks x 🙏

Where are you from?

PS No, I don't still take the med that worked. They no longer make it.

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