First Steps to Manage Fibromyalgia: Personal Stories and Tips from The Fibro Show Ep. 4

[@BonitaBrandt]

Thank you, ladies! I'm starting to look forward to the Friday videos. You are emotional support as well as giving good, practical advice.

[@thefibroshow]

So glad to hear the videos are helpful !!!

[@j.draper4106]

I went to Aquafit with my MIL for over a year. I liked the social aspect as well as gentle exercise. But then one day the pool heater broke and they put too much chlorine in the pool. My muscles froze up, I was in total pain and had a reaction to the chemicals. I managed to get out and warm up in the sauna, but was reluctant to go back. In the Sauna I met a woman who had been diagnosed in England 50 years ago with fibromyalgia. She was so helpful.

[@thefibroshow]

Thanks for sharing your experience. It’s a bummer to say the least when something happens to make a helpful therapy - unhelpful. Although it’s sounds like you found a silver lining meeting the woman from England. Funny how those things happen. Take care 🫶

[@amandafoxton6463]

Thank you so much for sharing your stories. I am a RGN so of course I did not go to a dr for 12 years. I knew something was seriously wrong with me, but caring for others were far more important than me. It was only when I could no longer get up out of a chair without assistance, I finally came clean with my GP and she immediately referred me to a rheumatologist. I was diagnosed with lupus and fibromyalgia. I have not managed myself well at all. I had to move to the UK because I had run out of money. I now live in Wales and I am with the NHS the government health system. It took me 6 months to see a rheumatologist and in that time my long flares ended up bedridden. I also have chronic heart failure, chronic osteoporosis and adrenal failure from all the cortisone. I have watched your therapeutic movement and found it fascinating. I cannot get on the floor but I can certainly do them on the bed. I live on disability and cannot afford anything else eg Naturopath. Physio you get a physio allocated to you for 6 weeks and that is it, unless you go to your GP with another problem and then he can refer you which can take 8 months. I have been here for two years and am still waiting to see a cardiologist. My last angiogram showed that I would need stents in 1 to 2 years so that is obviously past. I guess I have to wait until I have a heart attack and then see a cardiologist. I am definitely going to start with your warm up exercises and walk my corridor without a walker and increase it every two or three days. I am from South Africa so pools and water are my thing. Unfortunately the pool nearest to me I cannot get to by bus (I dont have a car) but I will see what I can do regarding transport. This has been long and boring but thank you for doing this channel, it is very helpful and I will start watching older ones too.😊

[@karlisande8308]

What a welcome treat you ladies are! My amazing husband has just wrapped me in a duvet/pillow/hot water bottle burrito and watching your video was exactly the companion for this flare. Thank you for sharing your wisdom and hope!

[@thefibroshow]

We are delighted we could be a helpful addition to your flare therapy 😊 Your husband sounds like a great support! Wishing you better health soon🫶

[@TheVernDude]

Appreciate the info! Checked out the foam roller video as well! You guys are a voice for people that definitely don't get heard and are unfortunately often misunderstood. Much love to you both!

[@thefibroshow]

Thank you for your kind words! Much fibro love to you as well 💜💜💜

[@DianeCoppen]

Thank you so much for your show. I have Fibromyalgia and find your show so helpful. I look forward to it every week.

[@thefibroshow]

So glad you are finding it helpful 💜

[@donnafurey8114]

The first thing that got me unstuck was when a friend sent me an article on fibro that quoted Ginevra Liptan! That got me researching and googling. I found the Fibro Manual and after much experimenting, I never looked back.

[@thefibroshow]

Oh my goodness this made my heart so happy to read 💜💜💜 much fibro love to you - Dr. G

[@tomwoods1725]

Great video, very informative. Please keep going with this.

[@thefibroshow]

Thanks for your comment 💜

[@jayverasummer]

I like that you both start with sleep! Dr. Ginevra, I was diagnosed with obstructive sleep apnea 6 or so years ago. I requested a sleep study after reading your book. So glad I did! Since I was a woman in her mid-30s and of a "normal" weight at the time, no one would've suggested a sleep study for me otherwise. While getting a CPAP didn't eliminate all of my symptoms, it majorly helped with many of them.

[@thefibroshow]

Thanks for sharing your experience! We are so glad The Fibro Manual was a helpful tool for you and that your sleep has improved.

[@jayverasummer]

@@thefibroshow Much more than my sleep! I used to have morning headaches, which are mostly gone, and constant tiredness. I still struggle with fatigue at times, but the CPAP has made a world of difference. :)

[@lisanoble7949]

I really look forward to your show every week and enjoy reading the stories of other Fibro fierce women and men in the comments. Thank you! ❤🙏

[@thefibroshow]

Thanks for your comment and we are so happy to learn that the show and this growing community is helpful💜

[@jjsmama401]

I have chronic pain and also gastrointestinal issues and it’s funny you mentioned dairy. Since I stopped drinking milk, my gastrointestinal issues have calmed down a lot. Doctors are so oblivious about fibromyalgia and chronic pain. Watching the “Take Care of Maya” documentary was so heart-wrenching. I relate to what she went through. Fighting the system to try to get someone to listen and take you seriously is so draining and depressing. 😢

[@DanF300]

Great Show 🎉 Helpful !

[@thefibroshow]

Glad it was helpful! Thank you!

[@mollysmith7191]

Keep the videos coming, please. An coping ideas & tips are appreciated!

[@thefibroshow]

Yes, we will and episodes will continue to share ideas and tips. Thanks for your feedback🫶

[@Ellamental22]

Sleep is such a struggle… Please continue to share non-pharmaceutical solutions!! The drugs the doctors push for sleep (antidepressants, benzos) can end up being terrible for many people in the long run

[@thefibroshow]

Thanks for your comment. Stay tuned, more info on sleep will be coming in future episodes.

[@skyfaulkner4798]

SLEEP has been one of my BIG issues also! For years I was on an RX until recent months; I am now taking an herbal combination Rx’d by my N.D. which is bringing me good sleep every night. 💗This week is another ENCOURAGING and HELPFUL episode😊; your show is what I need for supporting my daily challenges with Fibro. Your experiences and explanations are valuable and validating. THANK YOU!

[@thefibroshow]

Thanks SO much for your comment. It touches our hearts to know how helpful the show is for you. We are happy to hear you have found some support for better sleep.🫶

[@sandyh8755]

Just ran across your channel. I’m really interested to learn more about your journeys. I have had fibro for over 25 years. I still struggle with everything.

[@thefibroshow]

While we are not happy you need us, we are glad you found us. We hope you will find some helpful ideas from our shows💜

[@maryprice1616]

Oh my goodness, Sharon, I know I couldn’t have seen the same rheumatologist you did , but they must have trained together ! - he literally threw that same pamphlet at me and walked out - it was over 30 years ago and, at that time, I think a lot of drs didn’t even believe fm was a real thing 😞

[@thefibroshow]

Ugh - so sorry that happened to you too! In hindsight I take comfort that there was a silver lining to that whole experience for me - finding knowledge and hope from calling the number on the brochure. I hope you have found some silver linings and better care too. Thanks for watching. 💜 - Sharon

[@CDB9591]

I am so grateful for you both sharing this information. After 3.5 years I can’t find anything for sleep! Thank you for sharing your personal experiences. I meditate and myofascial release therapy thanks to you Dr. Geneva! Have you found better sleep with a supplement? I take a few medications so I don’t know what is safe or who could guide me. Thank you again for this great show!

[@thefibroshow]

Finding a HCP who can help work on sleep with you is key. There are definitely supplements and lifestyle changes that can help, but medications often have a much bigger impact. Dr. G has two chapters in her book The FibroManual dedicated to improving sleep and a big chart with all the various medication and supplement options. These other videos on the channel also cover sleep improvement. kzbin.info/www/bejne/pIfMZapoa8eoqa8si=J3UzD3fBxSdiLxvy and kzbin.info/www/bejne/nZLKoXihpZx4qLcsi=lNjoj5G6LGKRFBNF

[@CDB9591]

I love this show! Please keep sharing your experiences! I’m working on my insomnia and just love the show! Thank you for taking the time to help people. It can be a very difficult lonely journey. The Fibro Manual has been such a great book to study and get ideas. Thank you so much!

[@JaeP11]

Dr. Ginevra & Sharon, Thank you for what you're doing to improve the lives of fibromyalgia sufferers all over. I've been inspired by your stories, and am currently trying to transition into health coaching myself! One question I have for Dr. G: Some viruses, like the one that causes the Chicken Pox, can hide away in the nervous system. In my fibromyalgia case, this seems to be a potential to be the primary central sensitizer for my nervous system (see also: "Elsberg Syndrome"). I'm yet to see neurology on this topic and my PCP office knows little, but I was wondering if you know of any work that might make a connection between that family of viruses and fibromyalgia.

[@thefibroshow]

Love that you are exploring health coaching! From Dr. G : definitely viruses are one trigger for FM, usually causes a ME/CFS/FM combination picture. Thanks for being here!

[@WendyHannan-pt7ez]

Thank you ladies, your videos are so helpful. I have celiac disease now fibromyalgia I now find I’m dairy intolerant. I have every day pain, along with the dreaded flares. I find eating sugar makes my pain worse. I’m fortunate as I developed fibromyalgia in my early seventies so hard for people who have suffered for decades. Sleep is very hard with fibromyalgia, I don’t know how to get around that. 🤷🏼‍♀️ I love exercise, but now find it very hard, I must order your book Ginevra.

[@kellip5747]

I recently tried new trigger points with Stecco method and that was very helpful! My tension was under control for almost 4 days and that's the longest I've gone in 4,5 years. 😅 I will definitely continue with that. Another thing I've noticed is that the tension gets so much worse during PMS/PMDD. I just had a regular massage yesterday and because of hormonal changes my body has completely cramped up by today. 😅 It's the worst period of tension and emotional low for me and makes me reach for prescription meds. 🥴

[@thefibroshow]

Dr. G: I have definitely heard good things about the Stecco method, so fantastic you got some benefit! And yes hormonal changes with PMS and menopause etc do a number on fibromyalgia symptoms for sure. Suggest reading about magnesium inhe FibroManual, can be helpful sometimes for periods of increased physical tension/anxiety/stress.

[@SN-sz7kw]

I’m going through a crash. Wondering if anyone can relate - I have ADHD/CFS/fibro/chronic b12 deficiency. It seems I cope in dashes - taking adderall, b12 injections, & pain meds that focus & energize me & take the edge off the pain long enough to plow through essential life management tasks. But I get wiped out by those episodes & mentally/emotionally fatigued with just taking the pills & injections & go into an “after-lapse” - taking nothing for a stretch, just lying in bed in pain with my heating pad, feeling numb & rather hopeless. It’s a terrible cycle, but feel like it’s the only way to cope these days. I’d give a lot just to feel some genuine energy & natural pain free moments instead of this energetic flatness & pain with every move.

[@thefibroshow]

So sorry to hear about the crash and the struggle to find genuine energy and pain free moments. It is really tough. Sending some Fibro Family love.

[@bonniehewett1494]

It was helpful for me to hear you talk about your journey. I'm 75, got fibro in my 30s. A rheumatologist prescribed tramadol for me and it changed everything, I could get up and move everyday again! I don't like massage, i don't know if there is anyone nearby that can do myofascial therapy or if it's covered by Medicare. Healthcare is so expensive and I'm retired so I have to watch what I spend. Sleep is always a problem. Nobody ever seemed to understand the issues I have with exercise and that's frustrating. I feel like physical therapists think I'm lazy or a hypochondriac. The fibro progressed as my osteoarthritis got worse and worse, especially in my low back. I had a knee replacement, left hip replaced twice, right hip replacement and shoulder surgery for damage from a bone spur. I quit PT for the lower body surgeries and tried to do my own thing because they don't understand that I can't do a lot of reps of any exercise or maybe can't do it at all because it causes more pain somewhere. I'm slowing working on the shoulder PT. Meanwhile I have developed severe arthritis in my feet. Walking has always been the key for me but as things got worse it got harder and harder to walk; I still keep trying. With $500 custom orthotics, some days I can walk, some days I can't, certainly not as much as I used to. My chiropractor is the only one who has had some understanding of my chronic pain. I recently had to change to a new PCP when my very understanding MD retired. She was determined on the first visit to go after my tramadol which is the only thing that helps me get up and move every day. The opioid was her goal not my 40 years of chronic pain. I found another MD that doesn't have a problem with the tramadol, a big relief. I just keep trying whatever I can do each day and hope it keeps me mobile. I am learning a lot from you and The Fibro Manual. Your support is helpful!

[@thefibroshow]

Thanks for sharing your experience. You are working hard to advocate for yourself and manage your health -- it is not easy. We are glad The Fibro Manual and this show are helpful to you.

[@jjsmama401]

Bonnie has have found that walking barefoot on the beach helps the chronic pain in my feet so much. Do you have a sandy beach you can walk on?

[@bonniehewett1494]

@jjsmama401. No walking on beaches in winter here in western NY. I think it would be painful but maybe I could try in the summer. I can’t walk barefoot at all, I wear shoes with the orthotics all day and even when I get up to the bathroom at night.

[@SN-sz7kw]

I’m sorry for all you’re going through. It must be hard coping with all of that for so long. Sometimes we have to take time to acknowledge how hard just coping can be & treat the resulting emotional exhaustion. To me, that sometimes feels like an injury itself.

[@dianeneely8155]

Love love love myofacial release

[@marialissetteneiracuadra8348]

Dr., could you show where the tender points are located? Please try to demonstrate on a real person body . I have asked you about this before, but you never made the video . Thanks again .

[@thefibroshow]

I remember you asking about that, and yes I will make that video happen! I have too many ideas for videos and not enough time - Dr. G

[@kellip5747]

My primary doctor was literally the same - you just have to live with it. The End.

[@dianeneely8155]

Possible topic, skin condition like eczema and fibromyalgia

[@thefibroshow]

Hi! Thanks for the idea.

[@angieshelley4901]

Hopefully in 2025 theyll have a treatment. Hard to manage without

[@nataliedodson1637]

Hi everyone. My husband has git severe Fibromyalgia abd yas had for the last 5 years. He has had a few chest infections and we have noticed that 95 percent of his symptoms completely go away, mainly the exhaustion but also the aches!!! We live in England and our doctot said he cannot prescribe long term antibiotics for him as s 'preventative' measure. Has anyone else on here noticed this ? Kind Regard Natalie Dodson

[@sleepyspacegremlin]

So, be rich. Got it.

[@thefibroshow]

It completely sucks that the things that help people the most with Fibro are not covered by insurance. Both of us have been advocating for decades for changes, and we will continue to advocate.