Living with Fibromyalgia

Dr Bronwyn Lennox Thompson, senior lecturer on pain and pain management, and person with Fibromyalgia, talks about living with Fibromyalgia.
Presentation for MECFS Canterbury, 8th March 2023
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This session explores:
✦ What is Fibromyalgia
✦ Treatments
✦ Dr Thompsons own approach
✦ Q&A
NOTE: For people with Fibromyalgia who also have ME/CFS, we advise care when undertaking exercise or movement. Establish your energy and functionality limits to avoid triggering post-exertional malaise (PEM). (Post exertional malaise is a worsening of symptoms, that occurs when we have exceeded our energy envelope, and can result in a short- or long-term reduction in functionality.)
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ABOUT DR BRONWYN THOMPSON:
Dr Bronwyn Lennox Thompson is a Clinical Senior Lecturer at University of Otago, Christchurch Campus. She lives with fibromyalgia and has worked in the field of pain management for most of her clinical career.
Her roles have included occupational therapy and pain psychology, and has a particular focus on coping and resilience.
Bronwyn has recently been involved long covid management and has established some of the guidance for occupational therapy.
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ADDITIONAL RESOURCES:
✦ Timestamped slide list further below
✦ Information about Fibromyalgia on Health Navigator
www.healthnavigator.org.nz/he...
✦ Revised Fibromyalgia Impact Questionnaire (FIQR)
batemanhornecenter.org/wp-con...
✦ Effect of pharmacotherapy on Fibromyalgia: an Overview of systematic reviews. Costa AT et al, 2022.
www.researchgate.net/publicat...
✦ Review of nutritional approaches to fibromyalgia, Kadayifci F Z, et al, 2022
doi.org/10.1093/nutrit/nuac036
✦ Effects of Antioxidants on Pain Perception in Patients with Fibromyalgia - A Systematic Review, Fernandez-Araque A, et al, 2022
www.mdpi.com/2077-0383/11/9/2462
✦ Refer to Professor Julia Rucklidge’s work on quality brands at University of Canterbury
thebetterbrainbook.com/
✦ Efficacy of nonpharmacological interventions for individual features of fibromyalgia: a systematic review and meta-analysis of randomised controlled trials. Kundakci, B, et al, 2022.
journals.lww.com/pain/Abstrac... Abstract only available to public.
✦ Effect of different types of exercise in adult subjects with fibromyalgia: a systematic review and meta-analysis of randomised clinical trials.
www.nature.com/articles/s4159...
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CONTENT /SLIDE LIST:
00:00 Intro
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** ABOUT FIBROMYALGIA **
03:34 Fibromyalgia: it’s personal
05:10 It’s not new...
08:29 What is it?
09:30 Disordered sensory processing!
10:17 What does it mean?
12:13 Stimulus Intensity
17:03 How is it diagnosed?
20:36 Who gets fibromyalgia?
21:25 Technical talk
23:48 Q. Can it come from being over fatigued?
27:00 … in other words
“People with FM and other sensory processing disorders have amplified responses to normal stimuli, and it might be due to genetic adaptations that were useful during evolution to promote inflammation.” “We are more likely to notice the threats to our tissues than other people.”
27:59 What sets it off? Factors known to be associated with FM
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** TREATMENTS **
32:38 Treatments
35:35 Treatments available in NZ
38:39 Nutritional Supplements
40:23 Q. Thoughts on LDN - Low Dose Naltrexone?
42:50 The mainstay approaches - Nonpharmacological
48:55 Effects of Exercise
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** Dr Bronwyn Lennox Thompson’s PERSONAL APPROACH **
49:12 What do I do?
49:16 Exercise / Movement - walking, household activities
50:53 Cognitive behavioural approach - setting boundaries, prioritise important activities
54:40 What’s helped me?
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** QUESTIONS **
58:20 Questions
58:45 Is there a guideline that demonstrates the sleep stages in fibro people vs no fibro people?
1:00:06 Does Vitamin B12 help? Rhodiola?
1:01:16 Tingling pins and needles
1:02:40 Do you know how to differentiate between fibromyalgia, other pain conditions, and ME/CFS?
1:06:44 Central sensitisation
1:12:00 Use FIQ-R, not FIQ
1:12:25 Inflammation is not such a bad thing
1:15:25 Thank you - Advocating for ourselves

[@Dev-jq8ch]

waking up between 1 to 3 am every day is so exhausting! Headaches, too! I think I'm in a flare!

[@susanpotts3691]

I've had Fibromyalgia for over 20 years now and it's excruciating and there's never cure for it and you just suffer and so many people look at you and think oh you look normal but inside you just feel like torture So I hope this video can help us somewhat all of us who have to live in pain day after day. Thank you very much for your information.😢

[@Helena-ox7cr]

Fast opiates like oxygenic, abstral, instanyl have worked for me (NOToxycontin not patches! !!). Even tramadol (50mg,NOT slow 200mg!!) Has helped somewhat, but fast opiates took all pain away. i used them cyclicly like weekly or monthly basis to avoid tolerance from developing minimum one day mostly without meds a week with tens. Tens can provoke pain if used days in row so if I used it less than 3 days continuously, it has been ok a few times a year. I start to get electric shocks from it if I use it too often too long time. So it's been just a few times a year very occasionally. Stimulators have not worked forfull body crps, which Fibro is. Anakinra did reverse it in lab animals in fall2020. it's damaged small threade nerve problem. Increased blood flow helps so cardio helps. NOmight help logically. Good luck.

[@Truerealism747]

@@Helena-ox7cr I don't have pain in n touch with my fybromyalgia.infacr where it hurts it does good to press it at the time anyway

[@sharonsmith2642]

I also have fibro & it's been over 30 years now. I have improved quite a bit by eating a healthy diet, take vitamins, rest as much as you need to, stay away from stress as much as possible. Having good doctors who are knowledgable & understanding is so important. I wish you the best. You can improve as the more I research the better I have improved. Take care & may God Bless You.

[@Helena-ox7cr]

@@Truerealism747 Sure you got fibro? There are also crps/rsd or allodynia existing, which can be in joints or not in skin. Some are sensitive to shaking but not to touch. My sensitivity varies according to my med usage from 0-10. But yeah I usually have it in joint and not on skin unless with poor pain med. I remember fibro diagnoze had those painful pressure points.

[@Truerealism747]

​@@Helena-ox7crwell I've had pelvic pain 26 years diagnosed neurosthenia then them muscles six years ago found out I hav Asperger's heds add after sons diagnosis my father had CFS 1989 now ok but thyroid problems both aunties have it both surely have ADHD to found anything that helps check out Dr lenz Dr schubiner muscles crack and pop

[@WendyHannan-pt7ez]

I’m back here watching this again, you make so much sense. I can’t tell you how helpful this is. Thank you, and good luck to all the fibromyalgia suffers out there.

[@lindalawson7620]

OOOh - It is so refreshing to hear a real person in our lovely New Zealand talking about Fybromyalgia so honestly! You beat hands down all the other cranks out there who think they know what it is. Thank you Bronwyn. The fact that you are living with Fybro and doing the job you are doing is amazing! The challenges, frustration and lack of understanding - everyone thinks a pill will make it better - b.....s..t. That us just a big coverup! I have had Fybro for 28 years and although the attacks have lessened lately from permanent 24/7 days, to now fairly often but don't last as long, I have learned to help myself as pills never did really. My cure is a big glass of hot brandy and a hot water bottle placed on the pain and a lie down for a few hours and sometimes a sleep, which usually works now for me. (Lucky now I can do that, might be a bit hard at work). The brandy seems to relax the muscles in my back, the hottie helps warm them and then me completely stopping anything I am doing when I just cannot possibly do any more. Sometimes I can hardly breathe it hurts so much. Sometimes it comes and goes over three days and then no pain for a few days. I just wish I could get a decent nights sleep! Now, I know I am not going mad and it is not all in my head, especially with all the other symptoms I hadn't realised were possibly a part of Fybro. It would be great if there was a real cure! Thank you so much Dr Bronwyn Thompson for your honesty and openness. It explains so much!

[@lynnhendershot5440]

I was diagnosed with Fybrocitis at nine years of age,have suffered many symptoms over the years,when looking back really don't know how I bought up two boys and also held down a job as was often so tired didn't know how got out of bed-now am seventy eight and there has not been improvement in help for people enduring this,🤔

[@olgasleigh8349]

It took 20 years to diagnose me! Only three years ago a lady doctor listened and accepted that my pain is not in my imagination. In the UK there is no a proper support 😢

[@Truerealism747]

Any hypomobility Asperger's ADHD OCD fhtmr gene check out Dr lenz I never new until son's diagnosis

[@eclaire6330]

I am a patient at NHS Frimley Trust. I went through pain management to get a diagnosis. I now have 1:1 support for 8 sessions over 12 months to help with aspects of managing my symptoms. Maybe there is something available in your part of country. I was signed off physio after 4 sessions and put on an 18 month waiting list before I got seen by the pain management team. Good luck ❤

[@cheriburns1046]

I've had fibromyalsia for 10 years and it has completely ruined my life. My pain is so severe I can't do anything this woman can do, especially walking.

[@judipierry549]

I know. 🙁

[@wendyhannan2454]

That’s awful for you, I find walking helps, not long walks. Could you manage a little Tia Chi ? I’m about to try that, sleep 💤 is the worse the pain keeps you a wake.

[@wendyhannan2454]

Does anyone have low grade fever with FM, where it comes and goes. My skin on my arms become very clammy, sometimes I experience dizzyness and I become a little off balance when I walk. 🤷‍♀️

[@urnosey23]

Yes yes

[@rebeccasheely2975]

Thank you for all information! You are delightful!

[@makeroomtogrow]

Thank you for sharing this - i found it very helpful and informative

[@Grythpyke]

Very interesting and encouraging. I don't have FM (as far as I now) but I have a genetic kidney disorder and have had years of operations which I suspect has triggered an inflammatory reaction and almost constant background pain in my flank and groin. I distract myself by keeping busy (almost manic at times) but this leads to exhaustion, poor sleep and a lack of focus. Others see me as high energy or conversely somehow 'hungover ' or worse which is rather insulting considering I cant and don't drink. I can empathise to some degree with your pain dilemma

[@bigd4561]

Thank you for sharing.

[@juliahopkins4396]

Thank you 😊

[@jo-annsiebert4860]

Thank you very much for this information. I found it to be very reassuring. From Alberta Canada

[@corinnastock7784]

I'd like to say Thank you to Dr B Thompson. I'm in the UK. Fibromalgia, for me is totally debilitating. Restless legs has turned into full Restless Body....That can last for 24hrs.. Thank you for sharing your story. Ps. Let's not forget to Jig to music 😂

[@Helena-ox7cr]

Try liquid iron. Some articles say restless legs is often iron deficiency. Change the orientation of your bed. Some talk about power lines on the ground. I dunno. Just some guesses here :)

[@allisonmaxwell2553]

I was informed I was drug naive in A&E one day.. I honestly thought the nurse was being insulting, as I work in health care, and had never heard that term. I learnt a lesson about my inability to respond to opioids that day. My belief is that I have fibromyalgia. I have every symptom spoken about in this podcast. I also developed celiac disease .... And a B12 deficiency. Had ongoing elevation in my white blood count over the last 20 years but nobody would look at the cause.. Only tried to treat the symptoms as they arise. I am currently self medicating.... But have requested an intrinsic factor test. The NHS only take the overall B12 in the blood test, not what is available for the body to use. I've also started taking CBD oil in vape form. I've also started applying a B12 patch. In 4 day's I've improved significantly. Searching the co-factors now to make sure I'm in the optimal range.

[@WendyHannan-pt7ez]

I’m glad there’s more talk on fibromyalgia. This lady is great, I think it’s an advantage listening to someone suffering fibromyalgia, they have more understanding. I developed celiac disease some 15 years ago, now I have fibromyalgia, I wonder if there’s a connection ? Good luck to you, and everyone out there suffering chronic pain. 🙏

[@karenhughes2415]

Had it since young and use Natural remedies and resources and light therapy

[@J-ZIM]

does anyone have issues with their teeth or gums....sores, lots of root canals etc.?

[@momae3389]

Yes! I’ve developed very sensitive teeth, they then crack and I’ve had to have 2 teeth removed in the last few yrs as my UK dentist gave up trying to deal with my tooth pain issues. I now have TMJ caused by the extractions. I also have CRPS, diagnosed 20 yrs before the Fibro developed. I also have oral Mucocele. Life is pretty horrible.

[@wendyhannan2454]

Yes, I have I also grind my teeth and have to wear a mouth guard.

[@wendyhannan2454]

Oh that’s awful to have FM at such a young age. I know what your saying with kids and work, some how we just got through it. Mine started with fatigue I’d come home from work, and I needed to lay down and have a rest for 30 min, then start all over again.

[@wendibalshaw8583]

I'm living with fibromyalgia an it's different were ever I go ,everything unsaid is me !!

[@chainamarie03]

I'm in pain thru out the day on a daily basis. Been in pt for years but as I'm aging I've having pain just as ur describing. Way too many drs have told me to 'suck it up' or go try yoga. Can't sleep also.

[@judipierry549]

So sorry you continue to suffer despite the PT. I too have tried everything after 30+ years, exercise tolerance is pretty much nonexistent now. Pain is a constant and medication a necessity, it comes down to levels of severity and can I cope enough to do simple acts of daily living.

[@pammyj6967]

Have you found out that gluten sensitivity affects Fibromyalgia?

[@wendyhannan2454]

I’m celiac, and yes if I get glutened accidentally, the pain is far worse.

[@CarolynBerlin-lj6mm]

Massive. I cut out all grains and dairy and can walk and run and get out of a chair again now! Highly recommend.

[@lyndawashbrook8018]

Sadly your first list was me to a T. I have had it all for over 30 years now, tried all the meds without success. I was recently in a car crash and it has sent everything in to overdrive. The physio to help me heal has only stressed me out as it is making it all worse. Your info. was helpful as was reading the stories of others. I will have my family watch it also to help them understand. Thank so much for a very enlightening talk.

[@WendyHannan-pt7ez]

Yes, physio’s can push you too hard, if I over exercise I’m worn out the next day. I really enjoy exercise but I know my limits. Good idea letting the family watch this lady talk on fibromyalgia, I’m doing the same, it helps them understand. 🙏

[@eclaire6330]

Huge thanks to Dr B L-T. I was in a car crash in 2020. The physio provided by my insurance company had no clue. Her lack of knowledge left me feeling bullied and that I didn't know my own mind/body. They would not believe that I was in constant pain' because it varied', and I was told I did not have a problem with my nerves. After 8 weeks I felt exhausted, humiliated and my self confidence was shattered. I refused to go back. Please don't let a physio's lack of training leaving us feeling helpless. We know are own minds, body and our limitations.

[@drpankajbohra]

My mom, 73 , who has IBS since 2012 and Fibro since 2018. She is on Pregaba+Nortryptaline and Desvenlafaxine. We started Metformin 250mg 3 days back , she got good relief in Fibro Pain but IBS symptoms increased due to Metformin. Any suggestion? Hb1Ac 6.0

[@J-ZIM]

dont need a prescrip for capsaicin cream here in the U.S. Can purchase at any pharmacy

[@cammierudge365]

I started taking 7 day cleans off and on for 1 year and it is gone. Each time I felt better. It believe it is a gut parasites disease.

[@ozgal6929]

Yes there is a definite link to gut health and parasites. I'm going to try I v E r m E C t I n ( in tiny dose to start) as it's very safe as I'm allergic to all worming medications like combantrin or vermox.

[@Truerealism747]

Candida?

[@ozgal6929]

@@Truerealism747 that is just one. We are talking worms too. All parasites

[@ozgal6929]

I was cured totally during a 6 month period early ín my fibro journey (have CFS too). Dr Bill Anton (now dec) put me on a myriad of natural products , starting me on Aminoplex with water for the first week along with loads of antioxidants and vitamins. I was totally bedridden when i began and within just 5 days i could walk many kms, pushing my baby ín a pram. I remember many kf the products but not all. I coukd not afford to stay on the regime and went onto glyconutrients ínstead which helped me remain at about 50 to 80 percent health, but never back to 100 percent. Bill was a biochemist who studied my blood live and watched it as it dried...My blood looked like coils..I never told him my diagnosis but he said you have fibromyalgia, and it has been caused by leaky gut syndrome. Yes my doctor had put me on Viox and it had ripped holes into my intestines..Thank god it was banned for killing patients but i am sad my doctor put me on a new untried drug in the first place.. 😢. PS I cannot handle hot coffee either .

[@Truerealism747]

There's a name for the blood like that have you had it tested since

[@wendyhannan2454]

I didn’t think celiac disease could be cured, I’ve had it for 15 years. I thought you had fibromyalgia for life too, I think we have flare ups with FM. Meds just take the edge off they don’t stop the pain, as I see it.

[@J-ZIM]

i now know the difference between an Australian and New Zealand accent

[@corinnastock7784]

1:16:25

[@artwordie]

Hi There Doctor Thompson. My name is Bekki.I am 50.Currently after many years i have since 2022 been on a medical journey which i now believe my symtomps are fibromyalgia.I am looking to get this diagnosis medically. Would you have a contact address please. If that is something you would have time to help me out with. Im looking for further help to manage my symptoms. i can send my e mail address for further contact. If not. Thankyou for your you tube channel. Its very helpful.

[@wendyhannan2454]

It’s amazing how we have to diagnose our self, and then have it confirmed by a rheumatologist. It’s great to know it’s not in your head, and there’s a name for it. Light exercise was recommended for me, I was advised not to over do the exercise.