That pesky Neuropathy!

So the up and down issues continue along with some additional issues that I could do without. The last couple of weeks have continued to offer their challenges with up and down muscle/tendon type pains and increased neuropathy issues. In particular the burning in my knees has flared multiple times and I’m getting the uncomfortable pin prick type sensations throughout every day at the moment. Both of these are a worsening of symptoms I could do without. I’m also finding that my right eye vision is frequently more blurry and is having a noticeable impact on my vision in general. I did get my eyes tested last week and although my prescription has changed quite a bit in a year he didn’t notice anything suspicious in the eye health or pressure test. I think I will mention it to my GP on my next visit because something is going on there… yet another thing!

In addition to that the prostate concern continues with additional blood taken to day to test PSA levels, full count and a number of other markers. I am concerned about this and hope that it is a case of a benign prostate related issue. I also have an echocardiogram in a couple of weeks time to check out my heart, I don’t imagine they will find anything of concern but it’s good to be checked out anyway.

In my last post I mentioned I had a GP appointment booked and that went well. The GP who isn’t one I have seen very often was pretty interested in the Cipro reaction and asked quite a few questions. He also said he would arrange for some physio and gave me some details about getting help with general wellbeing and dealing with the stress of this whole situation. I wish there was some way to reduce or eradicate the neuropathy and allow the muscles to strengthen again. The pin pricking isn’t debilitating but it is pretty annoying, it’s the tendon twitches, muscle aches and joint pains that cause the most restriction and pain. I know that I’m suffering a bunch of symptoms of autoimmune disease and mitochondrial damage caused by the medicine but the uncertainty of recovery and timescales plays on my mind daily… there’s no doubt I’m somewhat consumed by the situation with my health above pretty much anything else which isn’t unexpected considering without my health my options in life are vastly reduced.

Stress levels have been much higher as well which I think is impacting my mood, my sleep and my physical floxing symptoms. Life is throwing everything including the kitchen sink in our general direction at the moment and it really is overwhelming at times. All I know is that life throws up many challenges and many surprises, some good and some bad, we just have to try and wade through and make the best of what we can.

Another little update

Seems that after a period where I neglected to update this blog I’ve suddenly much to write about!

I know only few days have passed since my last update but I wanted to keep documenting things as they change or progress. This week has been progressively difficult unfortunately and as a result I’m not doing too great today. I’ve had a whole bunch of weird and wonderful symptoms, some old and some new. I decided to list them here so if you’ve had any of these then feel free to comment!

  • Knees have been weak, bending them sometimes leads to them giving away. Any kind of twisting of the knee results in a lot of pain. If I bend them whilst sitting it sounds like there’s 2 pieces of sandpaper rubbing against each other. Walking down stairs has been difficult after the left knee gave on me and resulted in pain ever since.
  • Hives and itchy feelings are now happening multiple times a day. I end up with groups of bumps and redness when I scratch.
  • Eyes have had various symptoms including pressure feeling behind them, hot feeling, sharp pains, blurry vision.
  • The muscles in my legs, shoulders, arms, chest and back keep getting sharp tearing or pin prick sensations when they are being used.
  • Sleep pattern is messed up and I’m not sleeping well.
  • Right hand was very cold earlier whilst left was perfectly warm. This lasted for quite a while and you could feel the coldness kick in from the wrist onwards.
  • Had some digestive issues with episodes of nausea and pain.
  • Frequent urination.
  • Difficulty in focusing on tasks.
  • Pain in both ankles and feet, especially the bottom of the feet.
  • Increased PN issues, I.e. burning feelings in legs and skin.
  • Increased fatigue.
  • Muscle twitching in arms, face and legs.
  • Increased anxiety and depressed feelings.

It’s a long list and probably to a healthy person would look like I must be exaggerating but I’m not. I have experienced all of the above in the last few days and many today alone which of course makes life a challenge. I’m trying to focus on each day at the moment and not think too far ahead but even getting through 24 hours is sometimes hard going.

A new year, new hope?

OK, so I managed to document my 2016 summary and now I can get to this year so far. I was sat thinking this morning how it’s now exactly 4 years since I started having health problems and since I had the first UTI that led to 18 months of being sent from pillar to post with no direction. 14 courses of various penicillin based antibiotics clearly destroyed the good bacteria in my body and weakened my immune system so that when that final sledge hammer called Ciprofloxacin was unleashed there was nothing to counter the cell damage it would inflict. 4 long years of re-occurring problems with the last 21 months or so being a nightmare post Ciprofloxacin.

When I found Floxiehope early last year it at least gave me some hope that I could hopefully in time recover but it’s proving to be a struggle far greater than I imagined. By now, on my way to 2 years out from taking Cipro, I had hoped to be largely better, had expected that my mobility would be a long way back to normal, that my eyesight might be improving, that my mood might be improved and the memory of this would be just that, a memory. But that’s not the case, the progress is slow with a recovery seeming no nearer in many ways. I’ve had some stressful things to deal with already this year with the loss of our cat, job stresses, world stresses, life stresses and sadly the loss of my partners grandmother the week before last. I know that stress is a major factor in the speed at which your body heals so I understand I’m not dealing with the optimal recovery situation but who is?

Me and Luna, taken just before Christmas, weeks before we said goodbye.

I’ve had a few flare ups of floxing symptoms since January and they’ve been pretty bad with some of the most painful and worrying knee and muscle issues I’ve had. It concerns me greatly that no one seems to be able to tell me what is going on, lots of ideas but no evidence. Yes some of my tests have ruled out certain conditions, some haven’t leaving certain conditions a possibility and some have shown some damage or issues but in all those cases there’s still no treatment or way forward other than being told that in time hopefully things will improve. Having pulled my back 3 times since August, twice in the last 3 months I at least now know that I have 3 bulging discs but no idea why. Of course being that I’m a motorcyclist, like kayaking, want to sail and scuba more and have a bunch of things that all required an undamaged back the uncertainty about how my back will heal or not just adds yet more worry.

So does 2017 offer hope? Well hope is all I do have since there’s no guarantee of significant improvement. I try to hold on to the thought that I’ll be able to do the things I once did, that keeps me going. I hold on to the fact I have a lifetime of memories to make with my partner Caroline which so far has been restricted by my health and life in general. I’m 47, not young anymore but not old either and I should in this day and age be thinking that there’s possible 30 or 40 years ahead of me to live life, explore, enjoy and do those things I never did when I was younger. But instead I find myself struggling through each day, dealing with the plethora of pains, twinges and weakness that seem to randomly take hold. Mentally I’m struggling… I have found myself thinking more about the end of my life, feeling anxious that the medicine I’ve taken may have reduced the time I have left. I’m feeling a mixture of anger and sadness about where I find myself now, how my health has been ripped from me ruining the life that was planned and it need not have happened if I’d made different decisions. 

Today I’ve not felt myself at all with reoccurring tightness across my chest, pain in my elbow, weakness and shaking in my right leg, burning and aching in my back, tight and sore shoulders and shoulder blades… the list goes on. I’ve felt my anxiety increase as thoughts about what might be going on with my major organs have popped into my head, thoughts about why my muscles and joints are still becoming weaker even after all this time. I try to stay as active as I can but it’s a fine balance between doing stuff and over doing stuff and suffering the consequences. Fatigue seems to grab me often at the moment with a sudden feeling that I need sleep or have no energy. A fog descends over my thoughts making it hard to concentrate on tasks and my memory sometimes seems to suffer as well now causing me to panic a bit when I can’t remember things I’ve known for years. I know anxiety plays a part in this but it’s not the whole story and the Ciprofloxacin has taken its toll in making this worse as well.

There’s no doubt my mind is too preoccupied with worry and stress to simply relax and enjoy anything most of the time. I rarely laugh anymore and I struggle to feel upbeat and positive about anything, I hate feeling this way. I hope this year turns some this around and in the coming months I start to feel better not worse, leading to a more positive outlook and the happiness that I desperately need.