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Hope
A MyFibroTeam Member asked a question 💭

My Rheumatologist last week took me off all medications and has told me to manage with over the counter meds for 6-8 weeks.

He wants me to get scans done again and says he's getting to the end of what he can do to help me.
Everything he is given me so far has either made me worse or not helped nearly enough.

What am I meant to do when the best rheumatologist in my state says they can't help me anymore? That I will forever be this disabled in my life?

I am 27 and I leave my house 2 or 3 times… read more

posted April 20, 2021
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A MyFibroTeam Member

I would try a neurologist or pain management doctor. So sorry you are suffering and glad you reached out to us! This group is amazing and so supportive and helpful.. for starters, if you are able to take extra-strength tylenol and alleve(naproxen sodium), they are over the counter here.. you can combine tylenol with nsaids. I take extra-strength tylenol 3 times a day and the alleve, twice a day and get pretty good relief for mild fibro pain. A heating pad is a must! It feels so good and helps to get me going in the mornings

posted April 20, 2021
A MyFibroTeam Member

Hi @A MyFibroTeam Member

Having this disease at 27 is so sad, it’s horrible, every day is a mystery, will you feel terrible or will you feel extra terrible. I have been having more extra terrible days since December, new symptoms that have been super scary to the point I’ve all but convinced myself I’m dying even though doctors keep reassuring me that I’m not. I also live in Australia. I’ve been to every specialist you can think of and none have helped. I’ve had every scan you can have and blood test and it always turns out to be the beast that is fibro causing all of these bizarre things to happen to my body. Until recently I’ve been able to manage fibro with diet alone but I have a very stressful job and 2 young children and I know I need to do more than just eat healthy. I do everything for my family and my job and nothing for myself. We do have to be selfish like others have said. You’re not alone, there are lots of things you can try other than pharmaceutical meds if they’re not working....think outside the box, diet, acupuncture, pain clinics, massage, physical therapy, chiro, Bowen therapy, kinesiology, reiki, watch a funny movie or comedy show (laughing is great medicine), yoga, meditation (I’m crap at it but the guided ones actually help me sleep). You might have tried all of this stuff and more, I certainly have and some of it has helped, sometimes it hasn’t but I’m not giving up, somewhere deep down I have hope that I can manage this beast and live somewhat of a normal life. Reach out any time you need support, everyone on this site understands how you feel. Sending some love and strength to you xx

posted April 21, 2021
A MyFibroTeam Member

I don't know if it helps at all, but you're not alone. And you will find a way to live, it just takes time. Hang in there.

posted April 21, 2021
A MyFibroTeam Member

Praying for you, you do have a purpose so no giving up. Try cbd for pain relief. Stop feeling guilty, put yourself first and do something little everyday that you love. Hoping you can find some medication that works for you, definitely an antidepressant and physical/mental therapy. Hugs

posted April 20, 2021
A MyFibroTeam Member

Hi hope...hang in there. For me mental health care has always been part of my treatment. It helps more than you wd think. I had a dr remove all meds cuz he didnt know what else to so - it is a "see what happens" approach. Thats when I found a new better dr by asking ppl I know and looking at reviews online. Peace & love. You can do it.

posted April 20, 2021

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