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.

Difficult week

The last week has been pretty tough having to deal with increasing health issues and my partners grandmothers funeral. Unfortunately it seems that I’m having some problems with my prostate again which is what I was given the Ciprofloxacin for almost 2 years ago. If that is the case then all the Ciprofloxacin damage, the ill health, the continued attempt to recover and impact on my life have all been for nothing. Having spent a large proportion of last Saturday emptying my bladder, well over 20 visits something is clearly not too happy. Added to that is the uncomfortable feeling when I sit and fairly constant discomfort below all seem to indicate a problem in that area once again. 

I’ll see an emergency gp this afternoon to get it checked out but I know something is wrong it’s just not clear what. If it’s an infection then all I have available is antibiotics but most of them don’t help with prostate issues and there’s no way I’ll take Ciprofloxacin or similar again, not unless it’s life or death. 

The other possibility is BPH or an enlarged prostate but why? I know age makes this more likely and I am heading towards that age where things start to have issues. Of course the Ciprofloxacin ADR has aged me, physically I feel 10 to 20 years older and struggle to do what most 60 years olds seem to be able to do.

I have another gp appointment already booked for Friday to discuss my recent MRI results and what options there are for treatments. That on top of running over the situation with the ADR symptoms and how I tackle improving from them. I had already decided that I need to get more structure and routine into doing light exercise in the hope it strengthens the muscles and connective tissues that have been depleted since Ciprofloxacin. My consultant is fairly adamant that I will be fine and it takes a lot to damage your body but as I know from other people’s stories, our bodies are very much weakened and those connective tissues are prone to damage. So I’ll be taking it easy and using the swimming as a supportive way to exercise with minimal impact along with walks a few times a week or as I feel able.

All I need is a break to get on with life for a bit! Every time I plan to start something like an exercise routine of sorts another health issue pops up or my FQ symptoms flare making it difficult to be mobile. It drives me nuts!

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.

EMA to review Fluoroquinolones

Finally the EMA is going to review the use of these antibiotics which have left me in such a mess for almost 2 years now. I have mixed feelings about this, on the one hand it’s important in trying to stop further unnecessary damage to others but on the other it won’t fix me. We need these drugs controlled but we also need treatments to help recover those unlucky enough to have reacted to them.

http://www.ema.europa.eu/docs/en_GB/document_library/Referrals_document/Quinolone_fluoroquinolone_31/Procedure_started/WC500221432.pdf

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.
 

 

2016, a year of many changes

I had hoped to write my summary of 2016 earlier but this new year has already thrown up it’s own set of challenges already, more on that later…

So if you’ve followed this blog in any way you will know the main purpose of this blog is to document my recovery from an adverse reaction to Ciprofloxacin, something that has left me with quite serious physical issues which have had a major impact on my life over the last year or so. I was prescribed the “medicine” (I use that term loosely) as a precaution as the consultant suspected a prostate infection. That was May 2015, I reacted badly to the drugs I took within days! The months passed and I had hoped that I was recovering from the adverse reaction, that was until I took a single Ibuprofen tablet to help with a headache, a drug I later discovered was compromised with Ciprofloxacin. That was December 2015…

So January 2o16 started with me having leg problems, specifically muscle problems in my left calf. Within the first 2 weeks of January the symptoms started to increase with additional musculoskeletal problems, joints popping and cracking, tightness in muscles all over, burning sensations, aches, numbness, tinnitus, blurry vision and much more followed. So began the main story of 2016, my ill health due to medicine that was supposed to make me well. For the next few months I struggled to walk far at all, restricted to getting around the house mainly. My partner Caroline would take me out for fresh air and I’d sometimes manage a short walk of maybe 10 minutes or so before having to stop. This condition has aged me, not by a small amount, but by a huge amount, physically and mentally. I had rapid muscle and connective tissue degradation leading to constant pains and weakness. My skin aged in a month as the collagen seemed to simply be sucked out of my body. Bearing in mind that collagen makes up the bulk of connective tissues it was obvious my body was going to deteriorate and it did.

As the year progressed I had a cycle of better days and worse, sometimes feeling 75% better only to be back to 5% a day later. The condition is relentless, eating away at your confidence, your happiness and your soul as your mental strength is tested over and over. I had a lot of low periods when depression wrapped itself around me and life became something I could no longer see much point in. I had a 6 week episode of gout, incredibly painful and which left me with on-going problems in my right foot. I couldn’t plan for much because I never knew if I’d be ok to do it. As the year progressed I realised I had to continue to live otherwise life would simply pass me by. All the things I like to do and events I like to attend are not going to stop until I’m well again so I decided not to be the victim and to try and do as much as I could, sometimes too much as I discovered on occasion. However activities I had hoped to do had to be put on hold, not riding my motorcycles, no kayaking, no running, nothing physical at all.

I was lucky in that via another floxed friend I found a consultant that at least acknowledged FQ damage and was willing to work with me to see what could be done if anything. The reality was that pretty much all my tests came back normal or near normal. An EMG did show some nerve damage and my back MRI done late 2016 showed some significant disc bulging on 3 discs, 2 of which are affecting nearby nerves and would at least explain some of my pains and weakness. FQ Toxicity is known to deplete collagen and connective tissues and it’s very possible the discs were damaged by the same process, making them weaker and prone to bulge.

So at the end of 2016 my health was only slightly better than it had been almost a year earlier. Some of the weird symptoms have reduced but the most debilitating ones that affect my joints, muscles etc.. are not much better. My vision is worse and some days the eyes feel blurry and tired all day. Focusing on small text or detail has seen a massive decrease in ability and I hope that’s a temporary problem. My sleep pattern is up and down but I would say generally improved, I still don’t get enough quality sleep but it was terrible earlier in the year when I would sometimes be awake all night.

So what else happened in 2016? Well we got a gorgeous cat we named Luna (because of our Interest in anything astronomical). Sadly that didn’t go so well as she was diagnosed with ringworm right after we got her and ended up with months of treatment and confinement. It was not the stress you need when you’re already unwell. But we didn’t give up and just when we had the all clear from ringworm she became ill again with something called FIP, an incurable illness. Broken hearted we tried everything but alas she passed away just after new year, only a few weeks back. She was with us a short time, but it felt like forever and it really did devastate us.

We didn’t manage a holiday last year, I couldn’t manage it and we were dealing with the sick cat anyway but we did get out for a few events on my better days. Walks at Sandringham on a sunny day, even if they were very short! Cinema trips, always something we enjoy, a little escape from the real world which if we are honest is pretty depressing at the moment. We went to the Country to Country music festival in March, something that really challenged me as my health was pretty bad at the time but we still enjoyed it. later in the year we went to Bluedot as a last minute thing and enjoyed a couple of days of music and science with like minded folk. Again it was a real challenge but I did it and I was pleased to have done so even if the 2 day event resulted in a number of weeks of recovery. We did other things that broke the underlying stresses through the year but the health and cat issues really did overshadow things on the whole.

2016 was a tough year… for me the loss of many influences on my life from the music, film, tv and sciences only reinforced that I’m getting older. The unbelievable results of the Brexit vote and US elections completely evaporated my faith in the society I live in which seems to have become uncaring and selfish. I really dread the world todays younger generations will inherit… polluted, war torn, isolationist, uncaring and intolerant are just some of the words I’d use to describe how things are becoming.

Hoping 2017 offers more hope, better health and happier times!

Update on MRI and EMG

So after months of waiting I saw my consultant last month who was as always very reassuring and understanding. After a run through of my situation she ordered an MRI on my lumber area, x rays and some EMG testing of the legs. Finally the dates for these came around and on Friday I had the MRI performed at Worthing Hospital, some 4 hours from home. The experience wasn’t terrible but it also wasn’t the most fun I’ve ever had! The scanner was in the back of a lorry trailer which gets moved around various hospitals as required. Unfortunately the radio in the trailer wasn’t working and since I had no CDs with me I had nothing to listen to whilst the 15 minute scan took place. Why do you need music you might ask? Well if you never had an MRI you won’t appreciate the noise the machine generates as it performs the various scans. A mixture of buzzing, banging, tapping and a constant thumping which eventually gets on your nerves! Even with ear plugs then the non working headphones on I could still hear the noise. Then there’s the size of the MRI tunnel you get rolled into, it’s pretty tight. I literally had a couple of inches max between my face and the surface of the scanner. Being that I’m not too keen on tight spaces I opted to keep my eyes shut during the entire scan! Once it was over I left and now have to wait a few weeks for the results.

Then Monday I once again took the 4 hour journey to Worthing for what was a half hour appointment. The EMG testing was used to test if my nerves were working as expected and if my muscles appeared to be working normally. Since I get frequent leg issues, burning, painful joints, muscle weakness etc.. then this would possibly help prove if there was any physical reason. The initial tests on the nerves involved having a number of electrode sensors stuck on various locations on the leg before an electric pulse was zapped into the leg further up. The time the pulse took to travel etc.. would indicate if the nerves had any issues. Once this was completed the muscles were then checked in one of the legs only. This was a slightly more uncomfortable test as a needle like probe was inserted through the skin into the muscles so that the could be listened to! The activity in the muscle was measured again providing an indication of possible issues. I did get some feeedback at the end of the EMG that confirmed I have some damage but the important factor is that it’s not “significant” damage and therefore he hopes in time it will improve.

I now wait a couple of weeks before going to see the consultant to go over the results. In the mean time I’m waiting on an appointment to see a cardiologist to check out the increased palpitations I have been getting. My life now revolves around hospitals and doctors!