Wow! I have had quite a week of fighting fibromyalgia and so was overwhelmed to receive The Fibro Fighter Award from purplelawlady (fibromodem.wordpress.com). I am only a few weeks into this world of fibro, still learning lots but enjoying being able to share my journey with you. The award is given to recognise a blogger for educating, supporting, enlightening, informing, inspiring and motivating people about and with Fibromyalgia. I hope that I can live up to that, but you be the judge. Meanwhile thank you purplelawlady.
It was only last week when I was diagnosed with fibromyalgia after months of pain and tiredness. I (like I understand most people experience) had gone through months of feeling like I wasn’t being listened to, that it was all in my head and almost giving up on the medical profession. Finally an answer last week brought news with it that there was no medication I could be treated with for fibro because of the interaction of other medication (namely lithium). I was devastated because months of paracetemol and codeine, and then anti-inflammatories had done nothing to reduce my pain. I had been lead to believe once I received a formal diagnosis I would be able to be put on ‘proper drugs’. No such luck.
Now I am faced with the option of paracetemol (what you might take for a standard headache) and codeine, neither of which does much. I understand there is a medication called Pregabalin (Lyrica) that can be taken with lithium but in New Zealand it costs around NZ$200 per month. Ouch! That is way more than I can afford and so I have to rule it out. I have developed a codeine habit over the past months that I am keen to knock on the head. It leaves me drowsy and I struggle to type straight. I get the right letters, just not in the right order. So this week I convinced my doctor that I am coming off the codeine. If you are anywhere near me I’d look out because the headaches so far haven’t been nice. I don’t know how long it will take to come off but I’m on my way to being codeine-free.
Earlier this week I also saw a physiotherapist who specialises in cognitive behavioural pain management, at the recommendation of my rheumatologist. It was different that any trip to a physio ever before and actually I came away quite motivated. I heard him telling me that there were still options for me. By then I was feeling pretty doomed so his positive spin on fibro helped. He showed me how to harness the strength I still have in my body but to be honest when he told me of another fibro client who he had running triathlons I have to admit I became a bit skeptical. This was not the sort of thing I had read or heard. Anyway I agreed to come back for one more appointment (because I’m desperate) but finances are going to make it hard to sustain this kind of support. By the next day I was as sore as ever again, and was struggling to move. This continued for several days and really didn’t surprise me. I might be new to this but I already know that while I get told to exercise, there is always pain that follows.
this a team of qualified health professionals from around the world would provide free treatment to people who are stressed as a result of the earthquakes. I have mentioned our earthquakes before and can only say that the stress as a result of the loss, the ongoing quakes and the very long repair process has left many of us, including me with a very large amount of stress. My father also died during this time, as a result of his stress, and that has added to the pile for me to cope with. My understanding is that traumatic stress can lead to the onset of fibro and therefore I am picking that it is these events that lead to where I am today. The offer of free treatment was too good to refuse.
I have to say at this point that I am a little skeptical of some alternative treatments, but I figured as long as it didn’t harm me then what was there to lose? My first stop was to an Australian chiropractor who was doing NET treatment (Neuro Emotional Technique). This treatment was the main focus of the event and was new to me.
“NET practitioners are trained to locate stress patterns and assist in the completion of the body’s normal mind-body healing process. Once the correction is made, the body’s unresolved stress pattern can start to move toward stability and balance. It is important to note that NET does not cure or heal the patient, but rather removes blocks to the natural vitalism of the body, “allowing” the body to repair itself naturally.”
That’s apparently what she was doing. It involved a lot of testing the strength in my arm (to the point where I had a sore arm) and what seemed like piano playing on my wrist and hand (using her hand). Then I somehow rather awkwardly had to wrap one hand around the other, put one hand on my forehead and bend over as if to hug my knees. There I was meant to stay until I felt some relief. Hmmm.
I can’t say I really felt relief but instead it brought a lot of emotions to the surface, particularly regarding the earthquake damage and the loss of my Dad. I was crying by the end but am not sure whether it was her treatment bringing emotion to the surface or because the subject tends to be emotional for me anyway. I was administered with rescue remedy and then told I needed some body work. Well I know I need work on my body but not the kind she was suggesting.
My free half hour was up but I was referred to a Healing Touch practitioner anyway. I had never heard of Healing Touch and again was slightly skeptical when I saw what was being done with others.
“Healing Touch is a relaxing, nurturing energy therapy. Gentle touch assists in balancing your physical, mental, emotional, and spiritual well-being. Healing Touch works with your energy field to support your natural ability to heal. It is safe for all ages and works in harmony with standard medical care.”
Basically I sat on a chair for about 20 minutes while she moved her hands over my body. Not actually touching me for most of it but about 10 centimetres from me. She had a small pendulum which she was apparently using to assess the energy in me. At one point she put her hands on my feet and she
seemed to start shaking. She told me later that there was a lot of energy in my feet. Interestingly one of the worst sites for pain for me is in my feet. She also put her hands at the base of my skull (right where the neck and skull meet). The same thing happened and again that is another bad site for pain for me. I hadn’t mentioned either of these to her.
No I didn’t feel better. I’m not going to pretend. I really felt no different and wasn’t sure whether in those examples of her shaking was caused by me or by her. She was keen to link me up with a therapist in Christchurch (aren’t they always?) but I politely explained that I couldn’t afford more treatments. Did I want more? Well, I’ll see how I’m feeling tomorrow. That seems to be the test of everything related to fibro.
So what do I make of all this?
When my rheumatologist told me there was no medication for me, she recommended I try alternative therapies. She suggested a chiropractor or an osteopath, and she recommended the cognitive behavioural pain management. She also recommended I take up yoga and/or Pilates. I’m not completely closed off to trying any of these but the simple fact is they all cost money. In these remedies (and who knows what else?) I could spend as much as the medication would cost… but I simply don’t have that sort of money. Once upon a time I had money, I had a good income, I owned a house but in 18 years of mental illness and now fibro too, the money is gone. What concerns me is how am I going to find the money to treat myself? I don’t know but the way I’m feeling I can’t see working being a possibility.
Did the treatments today help? I have no idea and tomorrow morning when I wake up will be the test of whether they did harm. I can’t afford to try other treatments, not can I afford the medication. So for now I’ll carry on fighting fibro with paracetemol (which really does nothing) because for some reason that pleases my doctor. And I’ll keep up with the psychotherapy because that will help my frame of mind. Maybe it’s time to hit the NZ Government for better funding for fibro medication, but then I’m not sure I have the energy for that fight right now.
“The most beautiful people we have known are those who have known defeat, known suffering,
known struggle, known loss, and have found their way out of the depths. These persons have an
appreciation, a sensitivity, and an understanding of life that fills them with compassion,
gentleness, and a deep loving concern. Beautiful people do not just happen.”
― Elisabeth Kübler-Ross
- Pain… 24/7 (infinitesadnessorhope.wordpress.com)
- Learning Fibro As I Go (findfocus.wordpress.com)
- Fibromyalgia sucks! (fibrofella.wordpress.com)
- All About Fibromyalgia (mesbethfibro.wordpress.com)
- Introducing FibroFogg in 365 Days (fibrofogg.wordpress.com)
- My Friend Fibro (gingercouturier.wordpress.com)
- Natural Ways to Ease Fibromyalgia Pain (yepthatsme.com)
- Fibro, Fatigue, and Fog (katiescontemplations.wordpress.com)
- Fibromyalgia Tip: Get the Sleep You Need Despite Fibromyalgia Pain (theadventuresofarthritisnfibromyalgia.wordpress.com)
- Repost: Fibromyalgia and How it Relates to Stress, Depression, and Social Isolation (risablairlovitz.com)