Two years have passed

It’s now two years since I took Ciprofloxacin for a suspected prostate infection, two years since my life was turned upside down, two years I’ve in many ways lost. Yet still, after two years I am not fixed, not back to my old self and sadly still suffering daily with issues. So I wanted to blog an update and also some thoughts and ramblings related to all this.

A couple of weeks ago I provided an update and that was largely focused on the repeated heart palpitations and pain episodes. Things have continued to go up and down although I do feel a little better in recent days. My GP has written to the Cardiologist to try and get me in more quickly to do a few more tests and I have a 24 hour ECG booked for 2nd June.

So what do I think is going on? The reality is it could be many things or indeed a combination of many things.

  1. The worse case scenario is that there is some underlying health condition related to the heart or arteries causing Angina like pains however I’m not really sure that’s the problem.
  2. Another plausible option is that I am having sporadic problems with the Vagus nerve and the heart is getting random electrical triggers caused by some completely unrelated benign episode elsewhere in the body. That is a real possibility as there are many accounts in the “Floxed” community of similar symptoms caused by the Vagus nerve.
  3. Another again contributing factor will be stress of which I have many and varied! There’s no doubt the anxiety caused by on-going health problems feeds into this causing a cycle of more anxiety and more stress.
  4. Floxing itself may well be a contributor and I tell you why, the muscle degradation and collagen depletion that I have experienced all over my body could quite easily have affected the heart, which is of course a hugely important muscle! Maybe the Cipro damage has simply weakened the heart as it has all of my other muscles.

Unlike the doctors, we are the only people who can monitor ourselves 24 hours a day 7 days a week. Now it is true that our perceptions can be affected by our emotions and worries so it’s important we are cautious in our judgements and also that we don’t let ourselves be skewed by stories of others symptoms or conditions. However it is important to take note of the mental and physical symptoms we get, try to come to some distinction about their origins and triggers and relay that information to our doctors.

Now many of us struggle in that last aspect, taking the information to our doctors. Often it is the case that the doctors fail to listen or take our evidence seriously. It’s clear many frown upon self diagnosis and individual research and I accept to some degree that it is too easy to latch on to one symptom then the next and self diagnose cancer or a tumour or some other horrendous condition. That being said, a doctor should also not rule those conditions out without thorough investigation. If I go to the doctor with frequent heart issues then you expect to have that investigated, and to be honest fairly quickly! Luckily my GP has been good in that respect although It does sometime feel like he would rather I went away and didn’t keep turning up with more issues!

And herein lies another problem with people with unexplained illnesses and conditions, the word “unexplained”. Why do we keep going back to our doctors? Because we don’t have a satisfactory explanation and treatment option. Often the doctor will focus on one aspect, perform some tests for that, the usual scenario is doing a full blood count because they are not sure what to do with you! If you do have specific symptoms then you might be referred to a specialist in whatever discipline seems appropriate. If after those tests and consultations the conclusion is… “inconclusive” then you are left no better off both physically and mentally, often left with no direction and no help, thrown back on the heap of despair!

In my case, having been “damaged” by a therapeutic drug, I am immediately outside the realms of normal doctor investigations. I don’t have an illness as such, what I have is lots of symptoms of lots of illnesses. Being “Floxed” is a particularly bad reaction to end up with because of the level of damage caused and what gets damaged… our cells. The cells and in particular the Mitochondria, are crucially important in the health of our bodily ecosystem. As a result of this, the most common issues post Floxing are generally “autoimmune” in nature as our bodies natural state of affairs has been knocked out of the ball park. The resulting self harm the immune system does to us can be devastating leaving many with long term damage to multiple systems in our bodies. The scary thing is that the damage can come along later, much later and not necessarily at the time of taking the medication. In my case I had an immediate reaction which appeared to improve over many months only to explode almost 6 months afterwards having taken Ibuprofen, a commonly documented trigger amongst the Floxed community.

So for me it’s two years into this battle and I don’t feel significantly improved if I’m honest. There are many symptoms which I now only get fleetingly and some which have gone altogether it seems but others have held on tight and won’t let go. I’m not as bad as many out there which I am thankful of but I am sufficiently bad that my life is no longer normal and there are many restrictions on what I can do now.

On a good day I can wander slowly and maybe cover 5km or so but not without pain and not without consequences after. On a bad day I have acute burning and pains in my knees, ankles and feet and even wandering 50m is hard. It’s the nature of this condition, it’s not constant and not predictable.

The damage done is subtle and hard to detect in scans and x-rays, requiring surgery, arthroscopy and biopsies to actually check the internal condition of joints, tendons and muscle fibres. Each of those procedures in itself carries additional risks and I have first hand accounts of long term additional pain and suffering after having some of these. So that leaves us in a difficult place where there are often “indications” that there may be something going on but it’s all a bit fuzzy in nature.

In my case I have many indications but no hard diagnosis:-

  1. I had a back MRI that showed 3 slipped discs, another MRI show a thickening of the tendons in my foot that could indicate tendonitis yet pre-Cipro I had no symptoms or indicators for these issues.
  2. I have re-occurring joint pains, joint weakness, burning in joints that could indicate arthritis yet the blood tests don’t indicate that (although my consultant believes I have arthritic symptoms now). Again prior to Cipro I never experienced any joint pains or stiffness at all.
  3. I have had significant worsening of my eyesight although the eye health itself is fine, but this is another well documented Floxing issue.
  4. Nerve issues come and go with tingling, pin prick sensations, muscle spasms, teeth numbness, twitching, skin burning and weakness. Again my nerve conduction tests did show some nerve damage but it wasn’t felt to be overly significant and may well improve… once again something I have never had prior to Cipro.
  5. Insomnia comes and goes but in the beginning it was horrendous!
  6. The collagen depletion has left me with foot atrophy and loss of padding around ankle joints, knees, my backside and elbows. It hurts to sit on a hard surface or walk barefoot on concrete or lean on a table with my arms because it feels like I’m putting weight on bone with nothing in between.
  7. My most debilitating issues are musculoskeletal, in combination with the weakened tendons and ligaments I have lost large amounts of muscle. I can actually feel the difference in the structure of my arms, legs and back, the lumpy muscle has been replaced with soft flesh as if the muscle simply vanished. I struggle carrying a single bag of shopping now as I can feel the weight go right through my arms, down my back, down my legs and into my feet and it hurts. I used to carry 3 or 4 bags in each hand! My mobility is massively reduced, leaving my ability to do things around the house, do my hobbies, travel, go out, live life! massively restricted.

I am staying positive and I still intend to get some or all of my life back but I realise the timescales are longer than I had hoped for. It may be a year, two or more before I can look back on this and feel like I am well again but that’s what I intend to do somehow.

Remember, don’t take Ciprofloxacin unless you really have no other choice!

 

 

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.

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!

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.

And so it continues

Just catching up here with an update on Life. I thought the gout was kicking in again 2 days ago but so far it hasn’t but instead I’ve had increased all over joint and muscle problems, fatigue, burning in the joints and skin. FQT symptoms have gone up significantly and my general feeling of well being is through the floor at the moment. Mentally I’m at a low, too much stress, too many problems and unexpected things converging on my life from lots of directions have led to sleepless nights and a brain that refuses to shut up. I’m tired, both physically from the day to day struggle that is apparently life and mentally from the constant pains, worries, up and down emotions of dealing with FQT, work worries and the list just grows.

I keep seeing things on TV, people enjoying life, trekking across amazing countryside, swimming in crystal blue seas, just doing what normal people do and I wonder if I’ll ever be able to do that again. Not having been able to walk properly for over 6 months, limping around all the time, the constant twinges in my muscles, the sharp pains in my ankles, hips, the up and down sleep patterns, the increased anxiety and palpitations that seem to come with that, a constant reminder that my body isn’t right and waiting to “break” with one false move. I just want the ability to enjoy life and I seem to have lost that at the moment.

I try to get through each day as best I can but it’s hard work, never knowing whether you’ll get through without a major incident or if a sudden burst of physical symptoms will kick in and you’ll be back to being a heap of flesh and bones sat immobile in a chair just hoping the latest batch of torture will pass. You just want to be able to go out and do physical things, plan stuff and know that you’ll be able to do them. I’ve never felt so trapped by life, restricted by my own physical abilities and I don’t like it.

Our cat Luna has brought some much needed light into a very dark world. Her wonder and curiosity of everything is a delight to watch. She goes from being a maniac cat running around the house at warp factor 10 to a calm purring kitten sat on your lap in almost an instant.  When your opinion of the world and life seems to fade something like this is a much needed reminder that life can be fun and interesting. I think I want to be a cat in another life!

 

There’s a lot of interest in #FluoroquinoloneToxicity

In the 2 weeks or so since I started my blog on my Cipro issues I’ve had 473 people visit it from all over, USA, Canada, Japan, Denmark, UK, Hong Kong, Australia, Slovenia, Israel, Spain, UAE, Jordan, Norway, Netherlands, Ireland and a load more, just shows how much interest there is in this subject now.

Every day that passes I see more and more stories of people discovering that they have been damaged by these drugs. Some newly damaged and some suffering long term illness who have finally put the pieces of the jigsaw together and realised the catalyst for their misery was taking medication that they believed was safe.

Joint pains, Insomnia and Muscles

I’ve had a day or so off from updating the blog and wanted to do an update on how things are progressing. I’ve had a tough few days mentally unfortunately, the changes I feel in me every day both physically and mentally, the constant pains and discomfort just take their toll, that and my sleep patterns still being blown out of the water. I swing from anger to sadness over and over during the day. I’m angry that I let myself get into this condition and didn’t research before taking the medicine like I usually would. I’m angry that doctors and pharmaceutical companies produce drugs that they know can and do cause harm yet have no accountability or plan to treat those like me who have been poisoned by their drugs. I’m sad that my life has been changed for the worse, that my health will likely not be the same, that the things I love to do in life I can’t anymore and I have no idea if I will again or when. I’m sad that this has impacted on my partner and it’s not just me dealing with this. She has had to deal with seeing me fall apart, watch a grown man cry from the mental torture that this induces and she doesn’t know when things will improve and how much. I am lucky though, she accepted early on that this was the result of my Ciprofloxacin, something lots of people struggle with is getting family and friends to understand the severity and hopelessness of it all. She has been so supportive and positive, driving me along when I just want to lay down and wallow in my own self pity.

Every day I wake up from what little sleep I’ve had and I feel “groggy”, my legs are always tight first thing, often my shoulders and arms are also. My head takes a while to focus on anything and my eyes are generally tired. I have a routine of sorts in that I get up, have a healthy breakfast of some description, then go clean up and get ready for the day. I then get on with some work if I can or if I need to I’ll ease in with some music and catch up on the world news and social networks.

I guess I’m in the acute phase of all this as I literally do feel like I’m falling apart. Here are the current symptoms:

  1. Tendon/Muscle pain and tightness in legs (top to bottom), Achilles, arms, fingers, shoulders and neck. If I stretch any muscle, e.g. I bend over and pull the hamstring or reach for something and pull the back, the muscles immediately want to cramp.
  2. The neck pain is worse at the moment, there’s a burning pain, the bones at the top of the spine seem more prominent and the whole left neck muscle is sore. The muscle itself has decreased in size quite a lot as has the muscle all over my body.
  3. My left elbow is slightly swollen and sore, again I had this in my original reaction months ago but it went pretty quickly back then, this has lasted weeks this time.
  4. My head has the well documented “fog” that comes and goes, no doubt driven by the damage these drugs do throughout the body, the fatigue and anxiety. I can at least get on with things most of the time unlike some people and I find the distraction helps but again that is most of the time.
  5. My skin has changed drastically, it has aged, wrinkled, dry, thinned and I have a load more moles and age type spots. It’s literally like I’ve gone from 46 to 70 in 2 months. It was weird that my toes nails have beau lines but when I discovered Ciprofloxacin was a chemo drug I found identical images of people’s toes who were recovering from actual chemo.
  6. Weakness is a bit problem which is a side effect of the muscle loss. Even simple tasks are tiring, carrying a tray of food, lifting a small bag of clothes, standing for any length of time just all drains me.
  7. Insomnia continues to be a big problem with 3 or 4 hours sleep followed by restless dozing the norm at the moment.

I know from Floxiehope and various sites that recovery is measured in months and years not days and weeks. I know I need to be patient, keep eating healthy foods, keep taking supplements especially magnesium and antioxidants and try to stay positive, easier said than done!

I think that I dodged the bullet only to be hit by a ricochet with this. My original “floxing” event, back in May 2015 gave me unpleasant but relatively short lived symptoms. After I stopped taking the medication, 8 days in, the symptoms I had did fade over the next 2 or 3 weeks. I had a good 6 months of normality, did active things, went to the cinema, on holiday, sailed, kayaked, rode motorcycles, I just lived. I would never have suspected that the ADRs could return at a later date or that taking something as simple as a Ibuprofen painkiller could be the catalyst for a relapse of symptoms 100 times worse than the original episode. And that’s the problem, patients don’t know, doctors don’t know and pharmaceutical companies don’t know what the real consequences of taking drugs will be for each individual person and their unique genetics and medical history. That means that there are likely hundreds of thousands of people out there with illnesses likely as a result of medication they took in the past and they have no idea.

I can’t go back in time, if I could I’d do a lot of things differently in my life and there’s a lot I wouldn’t change but I’d never have taken that leap of faith that the doctors know everything about the drugs they prescribe and can guarantee you will be OK. I have to deal with this now for the foreseeable future and do everything possible to mend, but if I can get the word out, stop anyone else from taking risks they don’t need to, make people think twice then I will. If I can research and find studies that might point to cures I’ll try and find them. In the mean time, I’ll try and get through another day of pain and anguish.