Fibromyalgia, Well-being

Fibromyalgia, it would appear.

I’ve been a little quiet again, but this time it was deliberate, as I hunkered down to spend time focussing on fixing what was wrong with me. I am, at heart, a bit of a fixer!

As I’ve mentioned in past blog posts I’ve been having some difficulty with exercising.  Going for longer walks that have left me physically unable to walk for up to a week, finding that I was hurting an unrealistic amount after yoga.  I’d been doing a bit of voluntary work at a cafe for the homeless people of Bristol and after one shift, I literally couldn’t walk another step due to the pain. Eventually, the pain became so severe, so much of an inconvenience that I gave in and went to see a physiotherapist.

Upon examination, it appeared I had a problem with my lumbar spine and sacroiliac joint.  Excellent news, this was something that could be fixed.  Unfortunately, it didn’t fix it – well it did and it didn’t.  My back and sacroiliac joint are now working just fine, thanks to a mixture of manipulation and acupuncture, but I was still in pain; still getting tingling in my feet; still waking up in pain and feeling very stiff; still not able to exercise without causing myself pain – and not forgetting the ever present fatigue that accompanied it.  The measures I’d taken to cut out certain foods and alcohol had not given me the energy that all the evidence suggested I would have, nor had my sleep patterns improved to any great degree.

And so, off to the GP.  I had a trainee GP, who I suspect did far more tests than a fully qualified GP might have done as she was so keen to learn and understand what my symptoms might be.  At this point I was still 100% confident it was just the menopause and that I would get over it eventually!   But then she mentioned MS and Rheumatoid Arthritis – which was the time when I decided to just take a step back, avoid google, but just take some time to understand a bit more what was going on with my body and see where I was headed and perhaps take this all a little more seriously.  Whatever the outcome, it was not going to be a quick fix after all.  After a million and one different tests and scans, all the results came back clear – and so, I was prescribed a very low dose of Amitryptilene.

I’m not a medical person, not a clue about what going on that drug meant, all I knew was it was meant to help with neuropathic pain.   I really wanted to avoid drugs if at all possible, but I reached a point where I just needed a break from the pain and time to gather my thoughts.

A short visit to Dr Google later and I discovered it is a recognised treatment for both Fibromyalgia and MS.   Not great, but a million times better than where I had started from at my first GP appointment.  My first reaction was one of disappointment.  Like many people, I thought Fibromyalgia was a bit wishy washy – primarily because of so many people that I’ve met who apparently suffer from Fibromyalgia and who also happen to be a bit wishy washy, along with the number of people who’ve read the list of symptoms and have decided that’s what they are going to have.  I really didn’t want to be one of ‘those’ people.  Not a great start!

As I read the list of symptoms, however, I found I could place a tick next to each one of them. 

  • A constant feeling of extreme fatigue
  • Flu like pain, that cane be severe at times
  • Several tender body areas that hurt
  • Overall body aches
  • Feeling very anxious
  • Muscle stiffness and pain
  • Chronic back pain
  • Insomnia and disturbed sleep
  • Worsening pain after physical activity
  • Mental malaise and confusion (fibro fog)
  • Irritable bowel syndrome
  • Headaches
  • Allergies
  • Muscle Spasms
  • Irritable bladder
  • Restless legs
  • Numbness and tingling

Fibromyalgia is also recognised for the fact there is no test for it, but it is generally diagnosed as a consequence of each and every other test coming back clear.  It looked like I had my diagnosis.   Although I suspect the supervising GP still has his doubts about whether or not it is MS and has given me a list of symptoms to watch out for.

On the one hand I felt a huge wave of relief.  I had something; there was something wrong; there was something I could start to fix.  On the other was disappointment.  In my heart of hearts, I probably knew there wasn’t going to be a quick fix, but I really wanted something that they could put right in the next few months and I could step off in to a pain free, energy filled future.

As I look back though, I can see that it’s probably been brewing for a long time, certainly 10 years.  If I look just at the levels of exercise I used to be capable of and where I am now, the deterioration has been quite dramatic.  Even getting to the point where going to yoga three times a week was too much for me.  I’ve always struggled with fatigue, even in my twenties I slept most of the weekend – not because I’d been partying, but because I needed to do that just to get the energy together to make it through the working week.  Sometimes, when I was teaching, I’d have aches in my body so bad that I thought I had flu coming, and actually took Cold and Flu tablets to get me through the day.  I’ve definitely had irritable bladder since my early twenties, but never realised it was even a ‘thing’ until now. The thing I am most grateful for at this time is that I am a stay-home-wife, as I’m fairly confident that I would have reached the point where I was missing work on a regular basis.  

So … what next.  Everything I have read so far, points to diet and exercise as building blocks for managing fibromyalgia, so those things I started doing in December to improve my health haven’t been in vain.  They are a good starting point.  Thanks to my sister and Moving Medicine, I also have an exercise plan in place, setting small achievable goals (and I mean small), which mean I can progress with my exercise pain free.  I can swim, I can cycle, I can do some yoga and slowly I can build back up to the point at which I can go back to a yoga class, I have some exercises for building up my deep core muscles to support my lower back in the years to come.  I’m keeping moving, all the time, I even have a timer to make me move every hour, so my exercise is spaced over short chunks throughout the day. For the first time in a very long time I also have hope that tomorrow will be better.