Perspective 

When I had my adverse reaction to Ciprofloxacin just over 2 years ago it felt like my world had turned upside down. The onslaught of physical symptoms each day followed by the mental torture, anxiety and depression was without doubt life changing. I’ve fought slowly to get over the remaining symptoms but they persist and only time will tell if I ever fully recover from those 8 days of medication.

But the recent diagnosis of my unexpected heart condition really puts a fresh perspective on life and what we deal with. I had my initial consultation with the surgeon yesterday where my situation was explained plain and simple. My left major artery has severe narrowing and is 95% blocked. Being male the left major artery is hugely important as it feeds the majority of the heart. At the moment I have a tiny artery feeding the heart and as such I am walking a tightrope with my life. I was told that without a doubt I will die without having this operation. So he has fast tracked me as quickly as he can and I will be going in next Monday it seems for an operation on Tuesday and a resulting triple bypass operation that I hope will give me my life back and a future for many more years. 

Why have I got this? He doesn’t know but it’s possibly genetic and inherited and he will be testing samples to look for possible causes. Maybe I’m just unlucky or maybe even Ciprofloxacin has played a part in this but I can’t say for sure.

What I will say is that my perspective has changed significantly since this has happened. The reality of a life threatening condition versus an long term condition can not be compared. I’d rather be dealing with my floxing symptoms than this any day. So when your feeling down and like your floxing damage has robbed you of life, remember you’re still alive, you still have a chance to recover and whatever happens never take for granted the life you have no matter how bad it seems. I’ve lost parents and grandparents to illness and I’d do anything to have them back.

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.

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!

Anxiety

Anxiety, stress, tension, worry… Whatever you call it the effects on a person are substantial. The physical symptoms which manifest themselves as a result psychological issues that you have little control over can be debilitating and upsetting, leading to further anxiety and depression.

I first encountered the monster that is anxiety some 14 years ago when dealing with a whole bunch of life stresses, long working hours and the sudden death of a friend due to suicide. I suffered a massive panic attack one morning on my way to work with such extreme symptoms I couldn’t believe there wasn’t some physical illness or condition causing them. That morning I ended up in the Emergency department of a hospital in London after I was carted off in an ambulance as a suspected heart attack case. Some 4 hours later I was discharged after a plethora of tests all of which indicated no problem except for rapid heart rate.

So began over 18 months of learning to deal with anxiety and stress during which I was hospitalised 2 more times, 1 of which was incredibly distressing as they struggled to slow my heart rate below 140 resting and they resorted to using some pretty hard core drugs requiring me to be taken to the crash room in case my heart stopped. Thankfully it didn’t but they still couldn’t slow the heart rate so I remained in hospital for a further 4 days. When I eventually made it home I struggled with weird symptom after weird symptom. Dizzyness 24/7, muscle spasms, headaches and weird pains in my head, palpitations, insomnia, fatigue, twitching, odd burning sensations, adrenalin rushes, digestive issues and many more. I did CBT, read a lot of books, saw a therapist and learnt how to deal with it all for the next 8 years, mostly.

However the last 6 years have thrown a whole raft of stressful situations at me. First was losing my mother to cancer just 4 weeks after being diagnosed. Then my marriage broke down and a difficult divorce followed. My father was then diagnosed with cancer and died a year later during which time I developed some issues with my prostate which lasted around 1.5 years. The end result of that was the prescription of Ciprofloxacin that has left me physically and mentally tortured since May 2015. On top of this are job worries, day to day stresses and the world we live in which is stressful in itself just to be a part of.

This last year I’ve had good days and bad, some of the bad days have been really very low indeed. Depression has been a problem with periods where I couldn’t see point in the future, I struggled to enjoy anything, I would choke up or start to cry out of the blue. Recently I’ve been dealing with increased palpitations, arm pains, sleep issues, digestive issues, fatigue, tight chest and the usual anxiety symptoms. The knock on effect is feeling fed up and depressed about this constant battle of trying to beat the floxing, which in turn leads to more anxiety. So I’m going to try to address that, meditation, more sleep, swimming, peace and quiet to start with. I’d like to do Tai Chi again which I did years ago but physically I can’t right now. I think I’ll remove stimulants from my diet such as coffee and reduce sugar and salt to see if that helps. I’m sure in time this will pass as I hope the floxing will also, I just wish it would hurry up!

Visit to Consultant

Blood test war wound!

Just an update on the results of my visit to the consultant last Wednesday. It was a pretty epic journey down from North Norfolk to Worthing! Parking at the hospital was a nightmare so if you ever have to go there look for alternative parking. In short she once again emphasised how important it is to not get stress or get depressed as those emotions act as an immunosuppressant. She then looked at my symptoms, went through them and suggested that some could easily be down to anxiety/stress which I did agree but I also made it clear that much of the anxiety and depression comes from worrying about the continued health issues in addition to any every day life stress.

She also went through how the Cipro is an important and useful drug in many difficult situations but like any drug it can react badly with certain people as in my case, which I understand. I do believe that in a life or death scenario where there’s no option then the choice is very difficult, for me at least I won’t take them again and she said to me to avoid them in future.

The first stage of her investigation is to rule out any mechanical issues which a little unfortunately focused on my recent hip/back issues rather than things as a whole. However if she’s wanting to check out things then I guess it’s no bad thing. If there is a degradation in my muscles or joints that is visible then hopefully it will provide some direction as to treatment options. So I had a bunch of blood tests again to test largely for immune issues and inflammatory issues. I also had a hip x-ray and I’m going to be sent an MRI appointment and also a nerve conduction testing appointment.

One thing she made clear was that any radical diets or naturalistic approaches would likely do little if anything and that there was little actual evidence that these things had much if any impact. She told me to eat healthy food, lots of antioxidant foods but that’s it. She advised me not to stop dairy and insisted that doing so could have more of a negative impact than positive. It turns out that she was involved in running an Olympic team had had spent 10 years researching diet impact on the body especially around rheumatoid arthritis and other muscle/joint issues etc…

She also said that she would not recommend a non active approach to recovery and that I should be as active as I can without going over the top of course. She actually said what I have always thought, you only get one life so you can sit and feel sorry for yourself whilst your life goes by or you can get on and do what you can. She wants me to undertake a light exercise programme that involves walking and swimming. Initially walking short distances and building up slowly but the key was it needs to be regular. Yes an element of rest for recovery is needed but as I thought, the muscles degrade rapidly when not in use and weaken adding even more issues. She told me about how she worked with Olympic Athletes who were recovering from injury and the approach is always slowly but surely rather than all out which would no doubt result in further injury

I didn’t get everything I wanted resolved and I need to contact her again to ask for my right foot to be examined as that has been a pretty constant issue. Once again she emphasised that from the cases she has dealt with everyone has made a gradual recovery but she could not predict the level of recovery or the timeframe. So I guess the investigation has begun and it may result in nothing being found which isn’t uncommon! But at least I would have been checked out

I’m still dealing with a bunch of symptoms still including what feels like increased weakness, some sleep issues again, burning muscles and joint pains. I just want my mobility and strength back, I can live with some of the other issues!

Muscles, Tendons, Ligaments

A few more weeks pass by and my body continues to struggle dealing with this illness or condition, whatever we label it. I’ve had a steady decline over the last couple of months with increasing amounts of leg pain and mobility issues. Some of this I believe is down to Peripheral Neuropathy, in particular the burning which is fairly constant, twitches and weakness. I’m more aware of the muscle loss now than I was, I can see it, my shape has changed!

The biggest issue I’ve had is with mobility due to the problems with the muscles and connective tissues. I’ve had ups and downs this year, varying from hardly being able to walk to being able to wander around town even if there was pain doing so. I’ve not been in a situation where I could consider hiking anywhere and anything more than a slow walk has always been out of the question. Putting any stress or strain on any of my limbs or muscles causes immediate pains, pin prick sensations, feelings of tearing or burning.

What has been more of a concern is the decline with little improvement and no real “up” moment now for quite a while. I’m currently able to limp around the house, I can get out and wander short distances as long as I take breaks and I can drive. I even managed to fly this last weekend, it was only a 50 minute flight, but I had to deal with plenty of stairs and walking and I made it through with absolute grit and determination because it hurt, a lot.

My hip on the left, my back on the right side and my thighs have all been problematic, weak, suddenly giving away if I turn a weird angle or twist a certain way. It gets me down, of course it does, you’d have to be made of stone to not feel depressed when someone 20 years older goes flying up stairs that you can only manage 1 step at a time. I know rest is important but I also know too much can be detrimental so it’s trying to understand that balance. Last thing I want is to end up pulling or tearing a major tendon and having to deal with the recovery from that but the truth is I simply don’t know what damage has been done and is continuing to be done.

The best way I can describe this is that it feels like I’ve gone to sleep and drifted into a nightmare. A nightmare where my life has been taken away and I’m trapped inside a broken body that looks like mine but isn’t! I’m living groundhog day, the same routines, the same pains, the same future and it’s over and over except the symptoms change, in an every spiralling fashion, unpredictable, debilitating, ruining plans, making life a misery.

I guess I’m doing what so many have already have done, looking for answers, looking for hope, dealing with the anger, the pain and the sadness. Why did I take the damn pills? Why didn’t I research before I took them? Why did I blindly believe the consultant who gave them to me? I still relatively young, possibly only half way through my life yet it many ways right now it feels like I’ve had my life and this is it now. I “hope” that my body still has the ability to recover, that not too much damage is done. I mean I’ve not abused it, I rarely drink, I don’t smoke nor ever have. Yes I’ve maybe had a sweet tooth and probably could have been a bit more active at times but I’ve been healthy, gone through periods of visiting the gym regularly, did Kung-Fu  for a while, did Tai Chi for a while, cycled, did a bit of running many years ago etc..

The Ciprofloxacin just seems to have aged me from the inside, damaged anything that needs collagen and stopped my body repairing itself properly. My muscles, skin, teeth, eyesight and so much more has been impacted, quite unbelievable. Yet NO pharmaceutical company offers a solution, a majority of doctors won’t accept the drug caused the condition and those who do accept it have no treatment they can offer. I’ve read horror stories of people being treated like idiots by medical professionals (I use that term loosely) who have financial interests in prescribing various drugs. The USA seems much more aware of risks and the FDA recommendations compared to the UK agencies such as NICE and MHRA but the doctors still offer no solutions over there either.

I’m seeing the consultant Thursday 6th October, the 7th year anniversary of my mothers funeral as it happens. I hope she can advise and help in some way, she does at least accept that Ciprofloxacin caused all my issues but has stated that time is the only real healer.