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.
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.
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!
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!
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!
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!
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.