Free Fibro Therapy Courses

My journey towards poor health began in Zimbabwe.

I first started getting joint pain when I was 39, during my second pregnancy in 1996. I also developed food sensitivities at that time, which have remained with me.

The sudden unexpected loss of my husband 3 years later triggered further symptoms.
Diverticulosis was diagnosed in 2000. I was prescribed opioids for my joint pain the same year together with an anti-depressant and an anti-anxiety. I started prednisone treatment for polymyalgia in 2007. IBS was diagnosed after two laparoscopies and the removal of my appendix in 2008.

I was finally referred to a specialist physician in 2009 and was diagnosed with Lupus (SLE) and Rheumatoid Arthritis. (There were no rheumatologists in the capital then, and that was still the case in January 2021). After getting about on crutches for a year, I had a right hip replacement in 2011 due to avascular necrosis and was warned that the left hip was also showing signs of necrosis, apparently from being on too high a dose of prednisone for too long.

I tried various prescriptions for fibromyalgia starting in 2011. This did have the unwanted side effects of my falling asleep at work! My life was a cycle of work, shop, cook, eat, sleep on weekdays, and on weekends I crashed and stayed in bed.

In 2017 I left the specialist physician for an endocrinologist, as my GP felt he was more clued up about autoimmune diseases. My blood tests showed no rheumatoid factor and the arthritis was then diagnosed as osteoarthritis, as my bone density was so poor, and my bones had been breaking easily (left shoulder in 2006, then left knee in 2017). I started medications for osteoporosis. He tentatively diagnosed Mixed Connective Tissue Disease.

Later that year I developed a rash on my face, which quickly spread to the rest of my body, diagnosed by a dermatologist as eczema. The endocrinologist was not happy, and he put me on to a Johannesburg-based Zimbabwean rheumatologist whilst she was on holiday in Zimbabwe. She ordered all sorts of tests, one of them confirming I am HLA-B27 positive. She diagnosed Psoriasis and Psoriatic Arthritis with the beginning of Ankylosing Spondylitis. I started on medication not available in Zimbabwe, so very expensively imported from South Africa. Once she returned to Johannesburg, we consulted via WhatsApp video chats.

After the second parcel of medication overheated in transit from South Africa, I agreed with my GP that it was time to go back to my roots, and move to the UK where medication was more readily available. I moved here in January 2021. Hello covid! Hello lockdowns!

My health took a big dip – I’m sure the move was the trigger. My back, left hip and leg pain worsened to the extent that I could not walk more than 30 meters before my body locked up. I now use a walker to walk short distances. I am often too sore to get out of bed, and I can sleep 14 hours at a time, then dragging myself out of bed, with brain fog only clearing for a few hours in the evening. Depression set in, despite being on an anti-depressant.

I am grateful that I was eventually referred to a PICS Pain Clinic course which promoted mindfulness and movement and clearly explained the dangers of strong pain killers. Fortunately for me, the PIC pharmacist changed my anti-depressant to one that also covers anxiety, and in addition, helps with fibro pain, and he recommended paracetamol for arthritic pain. It’s working in parallel with meditation and positivity and movement!

I was able to see a physiotherapist in December 2021, and he sent me on a group workout course. Whilst this did help my mobility, it also knocked me for six, and I would be bed-ridden for 3 to 4 days after each fortnightly session. I was too demotivated to practice at home, as I was losing so many days. I perked up the minute I read in the Ilkeston Life about the FibroActive Group teaching Qigong and Tai Chi and I feel optimistic once more. Better still, I am also on their upcoming Fibro Therapy Course. The physiotherapist was also happy to hear I had signed up.

That doesn’t mean I’m giving up on medications – yet! I have now been on a medication for 12 months, and it has done nothing to improve my psoriasis, or my mobility. My dermatologist has persuaded the rheumatologist to let me try a new medication specifically for psoriasis AND arthritis, and I start this in early December.

The gifts that my autoimmune disease (whatever its name) has brought with it since 1996 are mostly still with me today: Raynaud’s, Livedo reticulatas, Sjogren’s, IBS, photosensitivity, frequent bouts of uveitis and fatigue.

I have a goal; to be able to travel to the Netherlands next summer to enjoy a visit with my younger daughter.

26 September 2022

We asked the attendees to list one thing you have taken away from each week:

Week 1: I’m not alone and so many possible avenues to take
Week 2: Better understanding of my condition
Week 3: Costochondritis!!
Week 4: How to decrease frequency of headaches
Week 5: This was huge for me – Possibly have CFS
Week 6: How colour filters increase functionality
Week 7: Sleep hygiene & stretching
Week 8: Ways to reduce IBS symptoms
Week 9: Supplements and food intolerance
Week 10: So many avenues to improve mental health other than medication
Week 11: Communicate with family and friends
Week 12: Important pointers to help

How confident are you overall, moving forward and managing your symptoms post
course?  8

On Qigong

Did you enjoy the classes?
Yes

Was there anything you found difficult?
No, the physical problems were from possible spinal stenosis.

Was there anything you found easy?
Yes. Relaxation & Breathing

Did you see any improvement in your health/mobility?
Yes. Greater flexibility, more range of movement

Did you practice in between classes?
Only when my pain allowed

How did you incorporate your practice into your daily routine and was it easy?
Put it at top priority. Not easy.

Have you seen an improvement in your mental health?
Yes. Not so scared of socialising.

Out of 10, how would you rate your confidence from week 1 to week 12?
Week 1: 2 – Week 12: 8

Will you continue to learn qigong as part of your pain management programme? Yes

 

What changes have you made or are planning to make as a result of being on the course?

• Have to pace myself
• Have to keep moving
• Planning visiting my daughter in the Netherlands

Did you get what you needed out of the course? Yes.

• Comprehensive understanding of conditions
• Excellent recommended solutions
• Mostly do-able exercise

Would you recommend this course to other sufferers and carers?
Definitely yes!

Have you joined or are you planning to continue to access our support services after this course?

Already joined group meetings and Facebook

Planning to join the qigong class in Jan 23

THANK YOU!

I caught Covid in May 2021. My youngest daughter brought it home from primary school and Covid ripped through the family, even though we were being very cautious as a family. This left me with Long Covid (LC); I’ve been suffering with it for almost a year and a half. Prior to catching Covid, I was working my way through the NHS Couch to 5k programme, and was jogging 3 times a week, to lose weight and get fit. Before catching Covid, I was able to jog 4k; two weeks later I was out of breath and struggling to walk 10 metres. The virus has left me with fatigue, and I still struggle with walking; it quickly wears me out. I can’t stand up for more than 10 minutes at a time before needing to sit down. The first six months of recovery, I felt that I was gradually improving, I was walking partway up our street for some daily exercise, and going slightly further each time if I could. Last September I went out for a walk with friends and pushed myself to walk a bit further than usual. I wish I’d known about post-exertional malaise (PEM) before I went on that walk — I was tired afterwards, and it really set me back. I noticeably felt the after effects for three weeks afterwards, and have never been able to get back to that level of activity since. I also have what I understand to be POTs.

I found out about PEM through an ME/CFS sufferer on social media. I only wish this knowledge had been acted on and passed on to LC sufferers earlier! This illness has been life-changing, things I took for granted pre-infection are things I now either have to plan for or simply can no longer do, such as going for a walk, collecting the kids from school, meeting friends, and doing a day’s work. I now have to think in terms of an energy budget; if I walk the 5-10 minutes to the school to collect my daughter, I couldn’t do anything else physical that day such as go for a walk up the street. All this is very isolating. I feel cut off from a lot of social activities either because I can’t walk or am too tired to take part. Fortunately, I’m able to work from home, and spend my weekends resting ready for the next working week; although this means that I can’t do much in terms of family and social activities.

My experience from a healthcare perspective has been a long, eye-opening process. From referral to the LC Clinic in Oct 2021, I waited seven months(!) to get an in-person appointment. Like many other LC sufferers, I felt abandoned by the system and left in limbo. In the meantime, I got a call from my local LC Hub, asking me to come into the Hub, get on a treadmill(!) and also do some leg presses(!). As soon as I heard that, my heart sank. Following the call, I was upset; a purpose-made facility that was supposed to help people in my situation, could actually make me worse. I refused to attend because I was concerned about damaging myself further through graded exercise. LC support (as limited as it is) seems to be physio/OT-led, and predominantly geared towards exercise, which isn’t appropriate for LC sufferers with fatigue symptoms. I’ve also discovered I can’t take being believed for granted: I’ve come across healthcare professionals that ‘don’t believe’ in POTs. I have since had a LC Hub appointment with a newly-appointed fatigue specialist, which I found helpful.

For me, it’s all about avenues to explore and adaptations to try to make the most of my situation. I recently bought a wheelchair to extend my range and allow me to go places without getting exhausted just getting there. I’m now thinking of getting a mobility scooter to help further. I feel self-conscious about the chair, but if it helps then I’d be silly not to use it. I try different dietary supplements to see if they help improve my energy levels, and I have tried Hyperbaric Oxygen Therapy at the Nottingham Oxygen MS Therapy Centre.

In terms of coping strategies, I try not to get my hopes up and am learning to accept my situation. It’s difficult not to compare where I was pre-Covid to where I am now. I don’t set goals for myself because I’ll only end up disappointed, and meeting those recovery goals is not something I have any real control over. That said, I feel lucky. I am still able to work, and have a support network of family and a couple of close friends who appreciate my situation, but I still find my new life very hard.

We asked the attendees to list one thing you have taken away from each week:

Week 1: Introduction to tai chi & qigong. Great overview
Week 2: Good overview, glad it included Long Covid stuff eg POTS
Week 3: Luckily, I don’t experience pain, but it was a useful insight into other conditions.
Week 4: Gut health, cutting out sugar for sinusitis.
Week 5: Coping techniques
Week 6: I didn’t know about this (Fibro Fog/ Irlen Syndrome) – good to know
Week 7: How to help e.g.: gentle swimming should reduce triggering PEM – Qigong
Week 8: Probiotics – Qigong
Week 9: GI discussion + Matt’s input about balancing was brilliant also. Qigong
Week 10: Nice to know it’s not just me. Great discussion. Qigong.
Week 11: Useful to list things out. Qigong
Week 12: Useful discussion, especially re: benefits

How confident are you overall, moving forward and managing your symptoms post
course?  10

On Qigong

Did you enjoy the classes? Yes
I started on the tai chi but found I preferred Qigong much more, switched streams and really enjoy the qigong.

Was there anything you found difficult? Yes
Tai chi, I got frustrated because it was more choreographed but eventually switched to qigong. First few weeks I found tricky, but now really enjoy and look forward to it.

Was there anything you found easy? Yes
Dr Lam’s warm up. I got into a routine of doing it first thing every morning to set me up for the day.

Did you see any improvement in your health/mobility? Yes
I feel more resilient, my mental health has also improved.

Did you practice in between classes? Yes!

How did you incorporate your practice into your daily routine and was it easy?
Dr Lam’s warm up set me up for the day. Once I did it a few times, It, was habit forming.

Have you seen an improvement in your mental health?
My wife noticed an improvement in my mental health. I feel better in myself.

Out of 10, how would you rate your confidence from week 1 to week 12? 10
It’s grown hugely.

Will you continue to learn qigong as part of your pain management programme? Yes
For sure. I’m going to enrol on the weekly qigong classes.

What changes have you made or are planning to make as a result of being on the course?
Keep the regular qigong going.

Did you get what you needed out of the course? Yes
After feeling essentially abandoned and castoff through long covid, I can’t underestimate how important it has been to feel part of something supportive and regular meet ups with people in similar situations in a positive environment.

Would you recommend this course to other sufferers and carers?
God yes!

Have you joined or are you planning to continue to access our support services after this course?
I have joined qigong classes and Facebook. I can’t make the support group due to work.

I just wanted to say thank you so much for letting me join the course. It’s been brilliant and I’ll miss it. Thanks Julie and Jane

 

At and until university (2012-2016) I was highly active: I went to the gym almost every day, played sport competitively, had a lot of late nights and did all the work I needed to. That said I did have problems with sleep: especially falling asleep.

After university I worked as a patent attorney and a couple of years into this, I noticed depression symptoms that prompted me to seek medical help, start anti-depressants (which didn’t help) and later seek weekly therapy (which I have been attending now since late 2018). I frequently found that when I came home from work I needed to go straight to bed.

After I quit this role, I qualified as a teacher and found that, once working, I couldn’t think coherently, needed support to stand towards the end of the day (or through the whole day on bad days), could not achieve the “bare minimum”, could not do any activities in the evenings (I stopped seeing friends, hobbies etc at this time). I cycled through 4 more antidepressants to little effect.

At this time, the incoherence of my thoughts made me concerned that I had some form of dementia, memory loss, or cognitive decay. I was tested for cancers, sleep apnoea, coeliacs, etc, and after all of these came back negative, I was placed on a 6-month waiting list for a CFS Occupational Therapist.

At this time, I quit teaching (as I was concerned about frequency of thoughts of suicide) and the occupational therapist helped to validate my decision to work as little as I could afford to by finding something with a higher hourly rate, so I needed fewer hours to earn enough for food and shelter, which pushed me towards specialist tutoring (where I am now).

I also joined Fibro Active about a month and a half ago which has been useful for developing ideas about things I need to do / avoid and given me the beginnings of a vocabulary to express what is happening.

List one thing you have taken away from each week:

Week 1: Course structure, goals and things to do at home
Week 2: Symptoms and techniques for managing symptoms
Week 3: Pain management techniques and types / sources of pain
Week 4: As above specific to head
Week 5: Fatigue related symptoms and how to pace
Week 6: How to manage brain fog
Week 7: Sleep techniques – things to try to improve sleep quality
Week 8: Manageable meal ideas
Week 9: Ideas about which nutrients may be needed to remedy which symptoms (including over-consuming nutrients)
Week 10: Signposting for depression
Week 11: Emotional regulation techniques with respect to loss
Week 12: Opportunity to learn from other attendees’ lived experiences

Out of 10, How confident are you overall, moving forward and managing your symptoms post course? 8

 

On Tai Chi

Did you enjoy the classes? Yes

Was there anything you found difficult? Yes
Remembering sequences of moves

Was there anything you found easy? Yes
Physical aspects of moves

Did you see any improvement in your health/mobility? Yes
More able to remember moves, able to more effortlessly maintain balance.

Did you practice in between classes? Yes
Mostly for the purpose of remembering moves

How did you incorporate your practice into your daily routine and was it easy?
Relatively – it was just important to also remember to build in some time after the routine to rest, as well as the time to actually do it.

Have you seen an improvement in your mental health?
Community aspect is very helpful, pacing is probably the single thing that has helped improve my mental health the most in terms of life changes made as a result of the course.

Out of 10, how would you rate your confidence from week 1 to week 12? 8

Will you continue to learn qigong as part of your pain management programme? Yes

What changes have you made or are planning to make as a result of being on the course?
Diet changes, more exercise, use pacing techniques to change lifestyle

Did you get what you needed out of the course? Yes
I started with very little understanding of a condition I had recently been diagnosed with and learned a lot through the course.

Would you recommend this course to other sufferers and carers? Yes

Have you joined or are you planning to continue to access our support services after this course?
I joined the support group and Facebook in the summer. Will continue with tai chi classes.

 

My Name is Nichola and I am 38 years old. I initially began having symptoms of Fibromyalgia when I was around 17. I had tinnitus symptoms, I had ringing in my ears and could hear a whooshing noise to the beat of my heartbeat. I saw my GP when I was around 20 who referred me to ENT at QMC and after an assessment they told me I was imagining it. That really upset me and even though I was advised to push further I didn’t, I didn’t see the point if I wasn’t believed. 

Fast forward another 6 years or so and the brain fog began and dizziness. I used to be a childminder and my Husband would come home from work and ask me if I had been drinking because my words would be jumbled up as I said them. I really had to think about what I wanted to say and say it slowly so that it would come out in the correct order. I would be walking / bumping into things.  Usually this occurred more at the end of the week, so I assumed it was tiredness after working a 70hr week. I saw my GP who diagnosed Meniere’s disease. He gave me medication that did not help. I did more research over the next year or so and went back and told him I think I was misdiagnosed because the impact that Meniere’s had one people did tally up with my symptoms. He agreed and said it was migraines.

In 2012 I had a car accident, someone went into the back of me when I was stationary at traffic lights, I began with shoulder and neck pain and diagnosed with whiplash. Since then, I have had physio, seen osteopaths and chiropractors on a regular basis, and it has never gone away.

I thought it was an injury from the accident but there was never an injury found.

All of the above symptoms continued and in 2016 I began to feel extremely tired all of the time, I have a name for how I was feeling, I named it sloth mode because I felt I moved slow like a sloth, like everything was an effort. I really felt like I was running on empty, waking up feeling more tired than when I had gone to bed. The GP sent me for blood tests, and they said my Vitamin D and Iron were low, I was on medication for a short amount of time and this improved, yet my symptoms did not, follow up tests showed my levels were good.

One day my manager said to me ‘Nichola I have been keeping my eye on you and how you are feeling and your symptoms, do you think you have Fibromyalgia’. I looked further into it and a lot of the symptoms rang true. My Grandma had been diagnosed a few years before and I always used to say to her, everything you have wrong with you, so do I but if never crossed my mind that it was actually that, but then her diagnosis she had was changed to Polymyalgia rheumatica and because a number of people I knew had openly said that Fibromyalgia was something doctors told you that you had because they do not know what is wrong with you, again I did nothing and tried to muddle on.

In 2019 I had my first holiday abroad with my Husband without the children for a week. The first day I got out of bed and couldn’t walk, it was as though I had lost the use of my legs, I had to hold on to him to walk anywhere and all of our plans to cycle and explore were cancelled.

Fast forward to 2021 and the pains in my legs, arms, hands, feet, and ankles began. I couldn’t exercise. I loved weight training, but I was too drained and in pain to continue. I had to have a week off work sick which I had never done before because I physically couldn’t get out of bed. I made a log of all my symptoms over the years that also included numbness / tingling in my arms and legs, sensitivity to lights and noise which would make me irritable, burning feet when in a cool shower, very heavy periods to the point I would need to go home from work and shower, restless legs and went to see my GP. They did blood tests and said if it comes back with nothing then you more than likely have fibro and that was my diagnosis. Bis bash bosh! I know the NHS are stretched and I also know not a lot can be done for fibro. I declined amitriptyline that was offered and have supplements instead.

I have found for me what helps is time for self-care, reading, time alone to switch off. When my stress levels are high that is when I am worse. I left my job and got one that made me see an improvement. However, after a tough year, I am struggling again at the moment, but I know it doesn’t always last long. I do not always talk to family and friends about how I feel because I feel a burden, like they are sick of hearing it and to be honest, I am sick of feeling like it.  

Heat is a big help. I cannot stand being cold, it makes my pain worse. The recent heatwave made me feel like a new woman, so that’s it, my plan is to get rich and move abroad!