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!

 

 

Another month passes

The last month has been a continued rollercoaster of issues, some clearly Cipro related and others that could be totally unrelated it’s hard to know. One of the concerns was a sudden increase in heart palpitations and related discomfort, often I’d be getting skipped beats or thumps every few minutes. I’m used to feeling them, having had a problem with stress about 15 years ago and episodes of anxiety and panic at that time. Since then I would get them infrequently but usually when tired or very stressed, but never this many and this often.

In December I saw a cardiologist who based on initial observations and historic evidence thought it wise to have an echocardiogram done. Being the NHS this took another 3 months to happen which considering this is a heart related issue is pretty dire. Anyway, the palpitations had eased a little in the weeks leading up to the scan and on the day of the scan I felt relatively OK. The result of the scan was that in general the heart looks healthy, no real obvious issues with the chambers or valves except a small amount of leakage in one valve which wasn’t considered anything to worry about. The scan doesn’t show the condition of arteries as the resolution isn’t enough so they could not comment on that aspect or even provide a reason for the AF type symptoms I’d been getting.

So the palpitations continued with some days worse than others until the frequency started to decrease and I thought great, things are getting better again. Then out of the blue I had an episode that did frighten me as the pain and sudden start was unexpected. Driving home in the dark I had a car drive right up behind me with head lights dazzling me. For miles the car just sat there and I obviously became annoyed, I could feel my pulse increase and the feeling that adrenaline was kicking in. Then suddenly my heart beat started jumping all over the place, followed by a tight clamping pain in my chest. I had to pull over, I felt dizzy, my right hand was shaking like a leaf, my left arm was uncomfortable. I pulled over and it took about 10 Minutes for the pain to subside and my shaking to stop but I felt awful after, drained, nauseaous and hot. I went home and to bed to try and sleep…

The next day I went to the GP who did a quick ECG, could see no obvious issues and sent me home. I had already read up on my symptoms and my conclusion was a couple of possible scenarios. The less concerning one being that it was simply a bad panic attack which somehow caused the blood flow to the heart to reduce triggering the unpleasant symptoms. The other idea was it could be Angina pain which very much matched the scenario and the symptoms. Of course I am hoping the second option isn’t the cause but I now feel like I need to have that ruled out. Having spoken to a friend who has suffered heart issues it was clear that you don’t mess about with pains in the chest, better safe than sorry.

Anyway, that was a week ago and this week I’ve only had a few flutters again but I’ve been feeling very fatigued, my vision has been blurry again and my mind has been a bit fuzzy. With regard to definite Cipro related issues I’ve had increasing flares of Arthritic burning in my knees, ankles and elbows along with stiffness in fingers and shoulders. My left calf has once again developed the cramps painful feeling I first had 15 months ago which is frustrating. This weekend has been very quiet as I’ve not wanted to walk much, the feet just hurt too much to stand around for long. The loss of padding which has been a steadily increasing thing over the last year now makes bare foot walking painful. My heels have become pretty sore the last 4 or 5 days, throbbing, tingling and tender to stand on. Likely a mixture of the collagen loss and tendon issues. Another symptom I’ve confirmed with many others suffering the same sadly.

I’ve been getting twinges and pain in my lower back now for about 7 months I guess. The MRI identified 3 bulging discs including a tear in one which likely explains why I’m getting this. I’m being extra careful to not lift too much or bend quickly as advised by the consultant but it’s yet another restriction on my already restricted physical activity. Like everything we can’t see what’s going on inside regularly to know if things are getting worse or better. My back MRI was done almost 6 months ago and I’d be interested to know if the discs are worse or improved. The sciatica and weakness has subsided so I assume the disc has improved that was pushing on the nerve.

Physiologically things are steady, I still feel annoyed and get angry and depressed on occasions as I think about the damage these pills have done to me and how many years of my life will have been vastly restricted as a result. Sleep is OK probably 75% of the time, but when insomnia does kick it it’s brutal. I am focusing on trying to learn new skills for work, improve my outlook on life itself and work on plans to improve my future… there’s a lot of things to fix and it all takes time.

So this week I’m kicking off a renewed plan to get my diet healthy and improve my physical and mental state. I’m going to start making Kefir and drink that every day as it is supposed to have a big impact on gut health… which in turn is supposed to help the immune system and pretty much everything else. The relationship between gut health and many illnesses is now widely agreed, the ability for the nutrients to be properly absorbed must be a big factor.

** UPDATE

I started writing this post a few days ago and had to leave it as draft as I didn’t have time to complete it. Since then a whole series of things have happened healthwise which I want to document. The palpitations I’ve been getting have continued steadily at a level higher than normal and I have been getting discomfort and burning in the chest along with that. On Tuesday morning I called the GP to follow up on blood tests taken after I saw him a couple of weeks ago and thankfully they were all normal but I needed a follow with him to discuss the continued palpitations. At 3.10pm I walked into his office and discussed the situation, I had the feeling he was annoyed that I had once again turned up with health issues but what do you do, sit at home and worry or feel unwell without a solutions. I appreciate the work GP doctors do and I understand they are dealing with lots of pressures but they are paid to investigate our concerns and to find solutions that either make us well or make us comfortable so I resent feeling like my attending a clinic is in some way a burden.

Anyway, he reluctantly did another ECG which looked OK apart from something he remarked about a Q3. On checking previous ECG it was there also so it wasn’t a recent thing and could either be a sign of a previous heart attack… or nothing at all! Anyway I got the feeling he didn’t really know what to do next and he ended up referring me to a clinic at the hospital that could hopefully do more tests. So I left the GP surgery and went to get in the car where my Caroline had been patiently waiting. Then the car wouldn’t start! I had about an hour to get to hospital and no transport. Frantically she called the auto services whilst I tried to get a taxi but to no avail. The auto services arrived in about 45 minutes and fixed the car but by then it was too late and I was told to go to the usual Accident and Emergency department. So after 4 hours, more blood tests an ECG and having to sit with a Canular stuck in my arm I eventually leave with an appointment to come back the next day. The next day I attended a clinic and will be having a 24 hour monitor fitted again shortly. Hopefully they will find a reason for all this but at present the tests are at least negative and nothing concerning has been found.

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.