To date, I have been a silent participant but I would like to thank all of you for the immense support I get just by being here, reading and learning- you have all really helped me (unknowingly) since I was diagnosed last year.
I used to be a dancer 14 years ago but had to give up after I developed unexplained global pain in my body, stiff joints and extreme exhaustion right after a surgery to remove a cyst on one of my ovaries. Overnight my life changed, my career was over and the doctors acted as if nothing was wrong with me. I eventually gave up on going to doctors with my health issues because initially they treated me like I was a hysterical 1800s Georgette Heyer heroine, then as I gained weight, they told me I was in pain as a result of the weight gain. The pain pre-dated the weight gain but no one wanted to hear that of course. Jump 14 years ahead and a very reluctant me was dragged to yet another doctor with my file of test results. We have no NHS or other state-sponsored healthcare system in my country and I felt shelling out more cash to more rich doctors was not something I wanted to do. Thankfully this particular Rheumatologist ended up being an angel in disguise!
He went through my test results, performed a quick physical exam of my joints etc and asked me questions which felt like a checklist of my life. He told me he suspected I had Fibromyalgia and was incredibly kind and professional in a way that I had forgotten a doctor could be. He prescribed cymbalta and after further tests some vitamin supplements. Within hours of my first cymbalta tablet, I felt the pain recede and wept- maybe grieving for the life I lost… maybe out of relief. It took a few days to find my equilibrium but I felt like my doctor had given me my life back- I decided I needed to look ahead and stop looking back at all that was lost.
Over the last five months, I have lost 52 pounds and I’m slowly getting back to trying to be fit and active. That is the hard part though because every time I try, I end up having a flare and have to stop! I am trying to pace my activity levels but my old habits of dancing and smiling through the pain are hard to stop. As a dancer, I learned to recognise the difference between good and bad pain- working muscles hurts initially and you have to keep going till it stops. Now, once the pain starts, it doesn’t stop and I just don’t know how to be active again.
I’m never pain free even on my meds but the “volume” has been turned down to bearable levels. Sadly though, the minute I try to get slightly active it sets off a flare. Plus minus the meds, the pain is back so now I’m worried about the long term effect of these meds.
A friend with back problems recently was prescribed KKT and told me the treatment is also used for fibromyalgia. I was wondering if anyone in the group has heard of or tried this treatment and if they found it effective? I’ve always been sceptical of non-allopathic solutions to health issues but I believe this treatment has been developed by a “proper” chiropractic doctor. I ran a search in the group and could not find any information about the treatment. If I do decide to try it, I will make sure I let all of you know how it goes.
Sorry for the longgggggg post and a big thanks again to all of you for helping me through this journey. May all of you feel better and if I can help in anyway do message and let me know. 🥰
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Sulcata-ca
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I am so glad the rheumatologist was the person to get you the right sort of help and help you go forward, life does change and frustrating sometimes but if we can pace threw our days it really does help, we’ll done for the weight loss as well, I always loved to dance but now I am watching my grand boys 5 and 8 do some moves bless them ,take care there are some great people here I agree x
Thank you 😊 More than a performer, I was a teacher and the pleasure of seeing children master dance steps and enjoy themselves creating something together is really something I miss. I do find spending time with kids generally helps raise my spirits- even though I have none of my own- how lucky to get time with your little ones. Grandma time is always the best!
Hi Sulcata-ca - I do appreciate having been so active, then finding your world has changed. As a retired physiotherapist I have learnt now to listen to my body. As already mentioned, you need to pace yourself; altho I knew about this, it was one of the things I struggled with! I don't have fibro, but another condition where this is so important too.
Also, one of the last things you should do is 'push' through the pain as this just ends up causing more pain. With exercise you should just do a little & often, only building up very gradually. Exercise is definitely good, & something I try every day, I also use distraction & mindfulness,
As far as Khan Kinetic treatment goes, I have found little evidence that it can help, as there has been little written about this & further good clinical research would be needed.
Perhaps you'll consider me biased, but I'd think you would do better getting a referral to a physiotherapist. My best wishes.
Thank you so much for taking the time out to reply with such great advice. I will try and add meditation and breathing exercises back into my routine. I think I have been focusing too much on getting myself moving and have forgotten that slowing down and quietness are as important. Also, will try a shorter exercise routine and do it more often- I clearly got over excited because I’ve so missed the joy and absolute peace that dance gave me. Will ask for the referral first though- maybe the physiotherapist be able to guide me about how much to do and how to increase the pain. I will wait on the KKT for now and see how it goes with physiotherapy.
Thanks again for your message. Wishing you relief and recovery with your health issues also. All the best 🙏🏼
I'm so sorry you had such a struggle to get answers. It's bad enough when you're being misunderstood and belittled by doctors in a relatively inexpensive, state sponsored health system, but paying for the privilege must hurt even more!
My experience of trying to be active over the 20 years since I developed FM is that it doesn't impact me till a day or two later.
I once was a very active person who regularly skiied off-piste, rode horses competitively, and swam and surfed in the ocean frequently.
These days I am sometimes tempted to indulge in much milder activities too strenuously or for too long and pay terribly for it. I can do the activity when I am in a good phase, but pay for it a few days later. The fact that it doesn't hurt at the time makes it really hard to not 'over do it'. Luckily I have a husband who understands my condition, and who regularly acts as a 'handbrake'. I often hear him saying "don't over do it".
Having someone who knows your limits, and who can lay a sensible, restraining hand on your shoulder (metaphorically) helps immensely, so maybe you should discuss it with someone who is close to you and get them to be your 'fibro conscience'.
A ‘fibro conscience’- what a great idea. Your husband sounds like a great support. Now that you mention it, I do manage to get things done and then crash a couple of days later. I will ask family to help me pace myself. Thanks 😊
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