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!

 

 

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!

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!

UK Newspaper Article

Finally a UK paper has written a story about Fluoroquinolone Toxicity. Focused around a fellow UK floxie the story gives some background and details about the potential effects of these medications. Sadly the story is a bit wooly and vague and although I along with others were interviewed our stories were not included and so could not bolster the credibility of the story.

Unfairly comments were made insinuating that Jane, the floxed interviewee, had some financial compensation desire when the truth is she simply wanted to spread the word and hopefully stop others suffering as we all do now. It’s better than no story at all but in truth it could have offered a lot more information and more statistics.

So it may not be perfect but it’s a start.

http://www.dailymail.co.uk/health/article-3593515/Antibiotics-got-rid-chest-infection-Jane-says-destroyed-health.html

Hope at last!

After 5 very rough months and almost a year of cipro related issues I finally got to see a specialist who has given me something I had lost, hope.

The appointment went very well,  she went through the history, frequently talked about the cipro causing my issues and was very realistic about the whole situation. She did a brief examination including my gout which she confirmed looked pretty typical for acute gout.

So finally there’s a plan, something I was lacking and something that gives direction. She thinks that in time I’ll get much better, she doesnt believe I’m about to kick the bucket or that I’ll get worse but she can’t guarantee that of course. She wants me to have a bunch of tests checking things like autoimmune profile, RA, liver and kidney function etc. .

The initial plan is to take a round of  Colchicine to try and rid the gout from my foot. Then get the tests done so I can start a “baby dose” of Prednisolone which she hopes might produce some relief whilst my body tries to deal with the problems. I know there’s mixed feelings about Prednisolone  but if it stabilises my inflamed muscles, joints etc.. and allows a better standard of life then it is worth trying.

She will review the various tests when they are back and in about 6 weeks we will catch up to see if the Prednisolone has helped at all. So I feel a bit more positive and just having a plan of sorts is a big mental boost.

Gout still not gone :(

So my foot is in agony still.. I’m not even sure if it’s 4 or 5 weeks now. I can’t walk on it, another weekend I’m going to be stuck in bed. I can’t stand this anymore… I’ve been trying natural paths, but nothing is helping and this 24/7 pain is just taking away what little life I had left after cipro. My joints in general are stiff and that was already a concern but now I worry about long term high uric acid levels and gout. My foot and toe joints will get damaged if I can’t stop this swelling and my kidneys and other organs will suffer if I can’t get this under control.

I’ve no choice but to look at medication, I wish there was another option. I was prescribed colchicine to deal with the inflamed joints so I’m going to try it. I’m not keen on the idea of long term or life long meds though.. that with the potential for nasty ADRs with them worries me. I at least need this attack reduced or gone.

So I’m sadly waving a white flag, my body couldn’t fight this alone, probably due to being floxed and not at full strength already. I just hope these meds will work without issues, I need this vice like pain gone.

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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.