Clix - Please don't apologise for not replying sooner. I only have short bursts of energy, when I feel I can do something.....and that's usually doing something on my iPad, whilst lying on my bed. Most of the time I haven't the energy to do even this. Maybe that's why I write such long posts (sorry) to catch the wave, whilst it's here; also I keep thinking of more things to tell you about and it all just pours out in a bit of a jumble I'm afraid.
I will find the letter and anything else that could be useful to show your GP and send them to you as a private message, or if you want to message me your email address, I'll send them that way. As soon as I find the letter, I'll send that alone though, as all my notes and research is all over the place and it might take me a while to sort.
Whilst the major ADRs for me were all the tendons on both legs and feet, from the knees down and the pain was so massive (I am no stranger to pain either), it was impossible to be aware of anything else for a long time. My legs felt like huge, dead tree trunks but were throbbing and on fire at the same time..so weird and my feet and I couldn't move either. They looked no different from normal. It wasn't till day 14 that I got effective pain relief ie liquid morphine; there was a Bank Holiday and a Dr who didn't really know me and didn't understand the amount of pain I was in..that was the worst 4 days ever.
Anyway, I digress again. On the 3rd day of Levo, I felt weak, breathless and very lightheaded, plus my legs were aching and I began to get cramp every few minutes, in my calves, toes, thighs, hands and even in my side. This was continuous. The 4th day I had the most terrible backache and although I have a bad back anyway, this was a different pain. That night I began to cry and didn't stop for 3 days and nights. I had no idea why I was crying but it was uncontrollable 24/7 and I just couldn't stop.
Every day something new happened and the general pains started to become more specific. I also started getting peripheral neuropathy in my feet, with strange tingling and pricking sensations, plus two numb toes, which still are.
I also had about 3 panic attacks during the next few months; I've never experienced these before.
My concentration went to zilch and I still can't focus well. I can't think of the word I need often and forget what someone has just told me. My brain feels like it's fine to mush really.
I didn't sleep, except for the odd hour in the day for about 3 months but thankfully even though I still am awake all night, I do get a few hours in the early hours or in the day but I'm permanently exhausted. It is true Fatigue that we are experiencing and not just feeling tired, like ether you or Gayle said, there's no feeling of being refreshed after any sleep.
I lost my voice for 3 months and the ENT Specialist said that my vocal chords were very dry. I had disastrous consultations with him because he thought I was mad for thinking it was due to the FQs, though it was. They dry out all mucus membranes. Eventually, the hoarseness went and I got my voice back but I had been scared that it would never return.
I was photosensitive and still am; I couldn't bear the light at all and often the iPad screen is too bright and I have it turned low anyway. When I last had my eyes tested 18 months ago, the optometrist asked me if I squinted a lot in the light, because my eyelids have suddenly drooped and now cover part of my pupil. This is also due to FQs, with squinting but also losing muscle tone. I need surgery to lift them but am too scared, so have done nothing yet.
My body thermostat has broken and I was choked to the bone for the first 6 months. All through the hot summer of 2013, I had the heating on and hot water bottles. Now I am still often very cold but can suddenly become really hot (not menapausal flushes) and permanently feel I'm running a low level fever.
I didn't mean to write all this but I suppose that I've tended to dwell on the more musculoskeletal ways in which I was affected, because the pain was so severe I guess and all consuming and it's only in the last year that I've been more aware of my other ADRs.
I wish I could give you an answer and tell you what to do to help yourself recover and I'm frustrated that I can't. A good healthy diet, with lots of fruit and Veg. Some people go completely organic and avoid meat (it contains hormones and possible Quinolones). You could cut out Gluten. Take Multivitamins, especially Vitamin C....I seem to remember reading early on that it can block the FQ from settling in the GABA receptors. There is strong evidence to show the FQs have a detrimental effect on our Mitochondria and FQs cross the blood-brain barrier. Vitamin D might help the Fatigue. In fact I would ask your GP to test you for mineral and vitamin deficiencies.
You will find articles on Floxie Hope, with explanations about the chemo type reaction of an FQ and also some suggestions of things you might be able to try. Avoid anything with Fluoride if you can, as it's the Fluorine molecules in FQs that allow them to penetrate so deeply at a cellular level.
I apologise for yet another lengthy post and for rambling all over the place.
Look up Glutathione...again you will find info on this on Floxie Hope. I really can't recommend too strongly that you get onto that site and begin to read. Lisa has organised it well and you can see a menu of her various pieces of research and writings, quite clearly. There are personal stories of people who've recovered. Lisa was Floxed herself.
I need to shut up and look for that letter...probably be tomorrow now though, unless I get lucky.
Carol