How a moment can change your life

I’ve seen a lot of ill health over the years, friends, family and my own, too much. The last 4 years have been particularly bad for my own health with around 2 years of reoccurring UTI later suspected to be a prostate issue. The following 2 years have been dealing with the aftermath of the adverse reaction caused by the Ciprofloxacin I was given to cure the prostate issue! It’s been a long, tiring and stressful period of life and one I had hoped would eventually pass leaving me with relatively decent health to live the rest of my days.

Yesterday things changed somewhat and once again I’m facing an uncertain future and life. I have for many years dealt with having a slightly fast pulse and slightly raised blood pressure. However it was always assumed that the cause was simply anxiety, the go to diagnosis when doctors don’t really know what’s causing a problem. Last year I started to develop slightly longer episodes of palpitations than I was used to and I was referred to a cardiologist. It took over 3 months to see the doctor and after an initial appointment I was referred to have an echocardiogram. I could see that the doctor wasn’t convinced anything was actually wrong but to appease me and my concerns he booked it. Another 3 months passed and the echocardiogram was done and showed no obvious issues.. hurray!

However I had some additional symptoms that started to develop in particular some discomfort on the left side under my ribs. I assumed this was digestive in origin and once again figured anxiety was the culprit. Then I had an episode of quite acute chest pain during a stressful encounter with a car driver who was driving right up my rear end. This was followed by a number of chest pain episodes caused by exertion and again stress. I notified the cardiologist and provided a detailed report of what had been going on and they decided to refer me to have a CT coronary angiogram but again it would take weeks or longer. The problem was that I am supposed to be flying to Florida from the UK in July and I wasn’t sure if I could fly.

So I ended up spending a lot of money to get the scan performed privately in order to speed things up. That was done on Monday in Wales, a very professional and nice hospital which has once of the most advanced scanners in the UK. It didn’t go exactly to plan as they struggled to get my heart rate down to the magic 60bpm event with heaps of beta blocker. I ended up having a longer scan than I had hoped and therefore more radiation but it was necessary. I got home Monday feeling pretty unwell and with a much increased shortness of breath. I stopped the beta blockers I had been taking in the hope those symptoms would reduce which then did, but the adrenaline type sensations have returned since. I’m currently waiting to get some alternative drugs to decrease the work the heart is doing.

So the results were sent to NHS cardiologist on Wednesday morning and I chased for an update. Although I was told the report had been passed on and I would get a response I heard nothing all day even after I chased multiple times. Then again yesterday I chased multiple times and had pretty much given up when I finally had a call at around 6.30pm.

It was one of those moments when reality seems to fade away for a moment and the voice in your ear becomes noise and meaningless. Expecting that he was going to tell me it was normal and again likely stress I was totally unprepared for the “we’ve found a narrowing in the left major artery that feeds your heart” that entered my ear. It took a moment for my mind to make sense of the words and then the realisation hit, I’ve got a problem with my heart, it’s not anxiety. He explained that he couldnt be certain of the extent of the narrowing without doing a full angiogram so he was going to book an emergency appointment (still 1 to 2 weeks on the NHS) and once that was done they would decide how to treat the condition. Basically the scale of narrowing will dictate whether I’m put on medication, have a stent or worse case need a bypass.

Now part of the reason this is all so unexpected is that I’m not high risk for heart disease. I have never smoked, I might have 1 or 2 beers a year! I have. Pretty healthy diet, my cholesterol is normal and my weight is only slightly higher than it should be. Yet somehow I have developed heart disease… as if the floxing wasn’t bad enough.

So now I have an unknown again whilst I wait and I know it’s highly unlikely I will be able to make the holiday to Florida in a few weeks time. The best I can hope for is relatively early stage build up and a successful stent placement which should in theory give me some years of better health. At 47 I have rather a lot to do in life yet, there’s too much that has been put on hold the last few years with my partner Caroline and my family and I need to amend that, get life on track, fix the broken things and make the most of the life ahead. When these things happen in life you realise that stress, jobs, things out of your control in the world, possessions, big salaries etc… all mean nothing in the end. Without your health you have nothing and all the material things and the stupid worries simply cause you anxiety and lost time you can’t ever get back.

Hoping for a better few weeks!

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.

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.

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.
 

 

Update on MRI and EMG

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

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

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