Fibromyalgia

My Suffering with Fibromyalgia, by Amira Balit

Fibromyalgia warrior, Amira Balit, suffers from Fibromyalgia. Amira has added her face and story to Faces & Stories of Fibromyalgia. I am so grateful that Amira has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Amira by following her on Instagram.

My Suffering with Fibromyalgia by Amira Balit
Amira Balit

I’m a 56-year-old mother of 3 beautiful daughters and have been suffering with Fibromyalgia since my early 20’s. I was only officially diagnosed in 1998 by a Rheumatologist after having multiple sessions of physiotherapy, different painkillers, and counselling for depression. Who doesn’t feel low when you’re not believed, and no one knows what’s causing your symptoms!

Getting my diagnosis was so important to me. Not only so I could get treatment but finally my husband and doctor would believe that my aches and pains weren’t all in my head, so to speak. However even now, I find there are some health professionals who aren’t familiar with Fibro and actually say to your face that it’s not a real condition, you must just be depressed , you should exercise more and lose weight. There is nothing worse … it’s so insulting and leads to a lack of self-esteem, and in my case suicidal thoughts.

Once I was prescribed the typical Fibro medications (Duloxetine, Pregabalin or Gabapentin, and Tramadol) and given reading material on the condition (no Google in those days), I was able to start a more gentle physiotherapy and aqua therapy which is better tailored to Fibro. I attended pain management courses and pain clinics.

However my marriage suffered tremendously as we were running a small hotel in Cornwall and had 3 young children. Working with your partner 7 days a week and bringing up small children at the same time is hard enough for a well person, let alone someone with widespread body pain and fatigue. Despite moving to Spain, my husband’s hometown, having lumber disc surgery, and a hysterectomy for endometriosis, we got divorced.

Interestingly Fibromyalgia was better recognized in Spain than it was in England at that time, as there was a lot of research and studies being done. Most doctors were knowledgeable and never dismissive. This made a huge difference to my mental state. In most towns they even had Fibro support groups.

When I returned to the UK in 2013, I had to start all over. Luckily, my current GP is great, and I have been able to resume physio and hydrotherapy. I was referred to acupuncture, to the community pain clinic, and have redone pain management courses. The Expert Patients programme was excellent. I also try to swim as warm water is my happy place 😊 !! 

All these treatments haven’t cured my chronic pain, fatigue, or Fibromyalgia, but they have helped me live more comfortably and reduced my pain levels. Nowadays, I still have bad days where I am bed-bound and rarely leave the house (obviously I’m shielding now due to the Corona Virus). I have gone from using crutches to using a walking frame with seat so that I can have a rest when walking my faithful dog Lilah.

Occasionally on those really bad days, I use a wheelchair. Having to depend on someone else to wheel you around is very humiliating at my age. So is having to have my sister wash my hair as it’s so painful to raise my arms.

I now live in a disabled bungalow with a wet room which is just what I need but coming to terms with this reality is the most difficult thing for me. Knowing I’ll never be independent again, be able to meet up with friends on the spur of the moment, travel freely, and most importantly, be the dependable mother I once was, who now lives off disability benefits, is very hard.

If I can give one piece of advice … be your own advocate, do the research, and be your own expert on your condition.

Amira

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