Doctors advice and newly diagnosed

WolfQueen

New member
Joined
Oct 11, 2021
Messages
1
Hi everyone. About a year and a half a go I was diagnosed with berlotti syndrome. I struggled with the pain and was put on morphine but recently I was diagnosed with fibromyalgia. I am seeing a specialist now who is helpful. I am getting a sit down board for the top.of my bath to sit as it can hurt if I stand too long. I'm trying new ways to try and help myself. I am looking into meditation and also reading a best seller to find peace and apparently ti chi is good for pain which I will be trying. I cant walk round for too long when I'm out as my balance will go off and I get exhausted so easy and then there is more pain. My doctor thinks coming online to talk to people who have fibromyalgia will make me feel not so alone in this as times I do. I just wanted to introduce myself and hopefully not feel like im alone through this. I have a great support system from my son and husband.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi WolfQueen,

Welcome - it's lovely to have you here. I think your doctor's advice is great, and you've landed in a good spot. This forum is fantastic for useful info and a whole lot of empathy, insight, and humour - depending on what's called for! I hope you find the kind of support that you need.

I just looked up berlotti syndrome, having never heard of it. I can imagine that must cause you significant back pain and mobility issues. It seems to be incredibly common that those with spine problems of one kind or another develop fibromyalgia - whether this is coincidence or connected, I guess we won't know until the right research happens! I have some spinal issues from an old horse riding accident, but I'm pretty sure my fibro came along first. I commiserate that you're dealing with both, but hope that the new diagnosis puts you on a path towards finding new things that help.

Our epic forum moderator Sunkacola wrote a great post outlining her advice for managing fibromyalgia. You'll find it pinned at the top of the General Discussion section of the forum. Like you, I also found meditation and relaxation techniques helpful - I think stress management is really key to getting a handle on this condition, and lessening the frequency of flares. Whatever you decide to implement as you go forwards, I'd say take things nice and slowly - without big changes or trying everything at once - and be ultra self-compassionate, whether you're making progress or not. Most of us seem to find that we can make a pretty decent difference to our fibro symptoms by layering up management strategies, but it's a case of experimenting to find what works, because we're all so different!

Best of luck to you. Feel free to ask, vent, or whatever you need in this space!
 

James Vanetten

New member
Joined
Oct 14, 2021
Messages
2
Hi, I have fibromyalgia and I found what helps me is to put on the head phones lay in bed in the dark and listen to healing music for pain,or fibromyalgia music on u-tube and that helps calm me down,relaxe, and it takes the pain away, and it helps fall asleep.
I am taking a muscle relaxer, gabapentant and venlafaxine.
 

Nika1995

New member
Joined
Jul 16, 2021
Messages
1
Hello ,

I've also been recently diagnosed with Fibromyalgia and right bertolotti syndrome at the same time. I used to have horrible sciatic pains in my right leg since childhood but my GP would tell that it's just growing pains. My fibromyalgia started 6 weeks after my baby was born and I went from healthy active 26 years old to not being able to walk for more than 5-10 minutes.My legs are constantly burning and twitching and I get flare ups when the weather is changing then I will get brain fog , and burning in joints all over my body. I take 30 mg of Amitriptyline as I'm breastfeeding doctors wouldn't give me anything else so it does help with sleep but not so much with pain I think I need higher dose. When I was diagnosed in June my rheumatologist mentioned Tai chi , cutting off caffeine and pacing yourself throughout the day. I go see chiropractor once a month and it helps with tender points as he works on my muscles. My advice would be don't cut off all physical activity because you will notice your ability to walk will get worse. Try to manage same activity level throughout the day.
I'm very sorry it's a terrible terrible thing to have I wouldn't wish it to anyone.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hello ,

I've also been recently diagnosed with Fibromyalgia and right bertolotti syndrome at the same time. I used to have horrible sciatic pains in my right leg since childhood but my GP would tell that it's just growing pains. My fibromyalgia started 6 weeks after my baby was born and I went from healthy active 26 years old to not being able to walk for more than 5-10 minutes.My legs are constantly burning and twitching and I get flare ups when the weather is changing then I will get brain fog , and burning in joints all over my body. I take 30 mg of Amitriptyline as I'm breastfeeding doctors wouldn't give me anything else so it does help with sleep but not so much with pain I think I need higher dose. When I was diagnosed in June my rheumatologist mentioned Tai chi , cutting off caffeine and pacing yourself throughout the day. I go see chiropractor once a month and it helps with tender points as he works on my muscles. My advice would be don't cut off all physical activity because you will notice your ability to walk will get worse. Try to manage same activity level throughout the day.
I'm very sorry it's a terrible terrible thing to have I wouldn't wish it to anyone.
I made a post with a lot of ideas for managing fibro without using drugs, and you may want to check it out. I hope something there helps you!
 
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