What Bits Of "advice" Do You Wish People Would Stop Telling You? | MyFibroTeam

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What Bits Of "advice" Do You Wish People Would Stop Telling You?

A MyFibroTeam Member

posted October 8, 2016
2820 replies
A MyFibroTeam Member

Please don't do that to yourself, others that don't have Fibromyalgia don't always understand. Please don't apologize for having fibro. Others should be more open minded and have the patience to learn about this condition. Especially since we know it affects people around the world. I dream of the day when medical professionals figure out the cause. The treatment seems to be all over the board. Please know that on this site there is lots of love and great reference material. Hope you are enjoying a good day!

posted June 20
A MyFibroTeam Member

Morning from England, dull, damp Morning... I find reading everyone comments so very familiar.. unfortunately for me most of medication I was taking that worked, I've had to stop .. I was using patches that released 35 mg every hour( that was the last one I had ) it had opioid in it.. with my fibro I suffer Headaches, chest pain.( Which scared the heck out of me felt has if I was having heart attack) but still have to get checked out even though it was fibro flare up... apparently they can bring on heart attacks ... I have 19 trigger points .. now I have DDD ( Degenerate Disc Disorder) in lumber part of my spine, reason had to stop majority of pain killers is because I have a cancer gene and according to the pain specialist they are the meds that cancer patients use.. and because of having the Gene taking the meds for rest if my life they Will trigger the cancer gene off.. so now high meds I am now taking are 2 Pregablin 300mg and Zapain 30/500mg.. but I take them now when pain is at its highest to get an affect from them, which it does work .. but I have now stopped explaining myself to others, they ask but when you start telling them they seem to switch the conversation.. which hurts I suffer alot in silence these days and do what ever I can manage alot on my own.. if I'm in pain I just say its self inflicted only myself to blame.. 🤔.. but on that I wish you All my strength, Love and Gentle Hugs.. stay safe and well ladies xx

posted June 1
A MyFibroTeam Member

Prayers I know how it feels I lost friends &family over this demon and longer care what they say I put my hands in lords hands

posted May 17, 2020
A MyFibroTeam Member

@A MyFibroTeam Member , oh yes i believe every person on this site and the ones that have fibro and are not on this site hear those same exact words ! If we could wear are bodies inside out ,they could then see what was what ! A man cuts his toe nail to short oh my goodness he has to stay in the bed for a few days ! Just like now people are having a rough time staying in there homes , getting cabin fever , so why on earth would we go from being active and having fun , to now staying in our homes ! it took my Mom 46 years to see me have an attack ! I don't no about anyone else but i really don't care if someone believe's me or not . Don't have they strength to waist on someone that has it in there head we are lying about are pain ! As long as GOD knows what is what ! Well Prayers and Blessings i send to you

posted May 17, 2020 (edited)
A MyFibroTeam Member

This question brings me back when I first received this disease, my family told me especially my mom nothing can hurt this bad it's all in your head, 20 years later doctor told her that she has it and boy did she complain worse than anybody I know.

posted May 16, 2020
A MyFibroTeam Member

@A MyFibroTeam Member
Hi Michele, it’s lovely to hear from you. Yes I am doing better emotionally and grateful for your love and prayers.
Thank you for giving me the details about Zomorph, as it gives me a much better picture. I think you are correct in your assumption as to why @A MyFibroTeam Member GP was trying to get her to not continue taking Zomorph because it is an opioid. . but he should just have told her that! I am already taking a small amount of opioid medication daily and don’t want to increase it if possible. Let’s see how things go, Michele. Apart from fibromyalgia, I have other health issues and don’t need more problems.
How are you doing? I sincerely hope that your family appreciates all that you do for them as you are a very loving, caring person. God bless you, Michele. Love, Khalida

posted February 29, 2020
A MyFibroTeam Member

@A MyFibroTeam Member Hay Sissy how have you been ? Praying that you are doing oh so much better. First please no I Love You oh so much and i wish nothing but love and peace be upon you and yours ! Okay Zomorph is in the morphine family , and yes it is one of the med's that they are watching and controlling them ! And at times Dr's thank People are not that smart , so they figure if they tell Pt's it is not helping ,that the person will stop taking it or not ask for the med ! I do take Morphine 150 mg's a day and if i do not take them oh how i suffer , but it takes 300 mg's to relieve the pain , but as far as my back goes oh the morphine does not touch the pain at all ! But if you ask your Dr . just say Dr i went to what ever your daughter , sister , it has to be someone in the family , and say you spent the night at there house and that you did not have your pain med's , so they gave you one of those pills and that it took away all your pain and for those hours the pill was in your system you felt like a normal Person ! And then ask the Dr for a Scrip ! it is not against the law for a family member to give another some med's maybe a stiff talking to but that's all ! Just don't give a name ! Hope the Dr will give you a scrip ! Smooches Pooches

posted February 29, 2020
A MyFibroTeam Member

I find it strange that your GP (who probably doesn’t have in-depth information about fibromyalgia) is trying to convince you that you are NOT getting pain relief from Zomorph? You should ask him why he doesn’t want you to take it. Perhaps it’s one of those medications that have not been listed as aiding in pain relief. It still doesn’t make sense . . the fact that it gives you so much pain relief that you can work full time in a busy hospital department, is amazing. Working in a hospital, you should be able to get more relevant information about this medication. Will discuss this medication with my rheumatologist for myself.

posted February 29, 2020
A MyFibroTeam Member

My GP is trying to convince me that the pain meds I take “do not” help with Fibromyalgia associated pain. I take 150mg of Zomorph modified release which helps me tremendously and helps me to work full time as an Ophthalmic nurse in a busy department at our local hospital. Without these meds I wouldn’t even be able to make a cup of tea in a morning let alone hold down a full time demanding job.

posted February 27, 2020
A MyFibroTeam Member

I use CPap machine- very helpful.

posted February 26, 2020

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