This is my story as of 20th February 2016…
So what happened that made me want to write a blog? It started in 2012 when I developed a suspected urinary track infection (UTI). I visited my local GP who prescribed a course of antibiotics. A couple of weeks passed, the UTI subsided only to return a couple of weeks later. After 3 UTI’s I had already done a bunch of research and suspected it could be a condition called Prostatitis. The problem was that I was in the middle of moving to Norfolk from Reading so I had been seeing various GP’s. I suggested Prostatitis and it wasn’t entirely excluded but since it is a condition that is very difficult to diagnose it was side lined. Over the next 16 months I had another 12 UTI’s, some of which I passed blood, each time I was given a bunch of antibitotics, each time the symptoms subsided. Finally I was referred to a consultant and had a endoscopy performed (very uncomfortable) that found no obvious issues in my bladder but did leave with with on going pains to this day. After that I was sent to have my colon checked and a colonoscopy was performed, again no obvious signs of any issues. I had 3 CT scans done over that time, only some signs of Diverticular disease were found as expected at my age on a western diet.
Finally I was referred to another Urologist in May 2015 and 18 months after I suggested it, he agreed it was likely I had Prostatitis! If they had listened to me before I could have avoided probably a dozen doses of antibiotics which no doubt screwed up my internal biodome. His treatment was to get me to take another stronger antibiotic called Ciprofloxacin, a Fluoroquinolone (FQ) antibiotic, for 6 weeks. This was apparently the usual approach and the drugs were much better at dealing with deep rooted infections. What he didn’t tell me was what could go wrong, what side effects I could expect or worse case scenario the long term effects.
As with most people I was desperate after so long dealing with the UTI problems and didn’t really digest the leaflet that came with the pills. I was pretty reluctant to take them, the idea of yet more pills, 6 weeks worth this time, filled me with dread, but what choice was there and the consultant had advised and issued them to me. Just 4 days into the medication I was feeling unwell, I had some muscle pains, nausea, headache and sleeping difficulty. I persevered as I wanted the UTI issue gone but by day 8 I was a wreck, my elbow was in agony, my legs and arms felt weak, my muscles hurt, I couldn’t sleep at all, nausea was coming in waves, my head hurt so I stopped taking them.
About 2 weeks later things had settled down and I felt generally better. What followed then was 6 months of pretty reasonable health, the odd aches, the odd pains and I still had sleep issues but I put that down to stress. During that time I walked in Scotland, rode my motorcycle miles, drove for hours in the car many times, did kayaking, sailing, swimming and generally was fairly active. Then out of the blue I developed a cold at the start of December 2015 and felt the usual pains including quite a bad headache. I rarely used Ibuprofen but this time I decided that I needed something as the paracetamol was not helping so I took one tablet and went to bed.
I woke up the next morning, headache still present and worse, my left calf muscle and leg were painful and tight. I scratched my head, tried to think if I had done anything physical the day before but no, nothing. So I ignored it and figured it would settle down. I carried on getting ready for Christmas which included hobbling around town getting gifts etc… I had a couple of weird “moments” during this time where I suddenly lost all strength and felt twice as heavy as normal. So much so that I ended up having to sit down for a while to recover. Again, I put it down to stress, lack of sleep and general fatigue.
So over Christmas the leg did not improve, insomnia was getting worse and I was feeling generally tired. I carried on as normal, even did a few walks although I had to hobble along a bit. Then by mid January and still no improvement I decided to go to the Doctor as I was concerned about the length of the pain and risk with clots. In the mean time I had started researching on line and looking for links to events that had happened to me over the previous months. Then I found it, a scenario that fitted my predicament completely.
The likely cause was adverse reactions to the Ciprofloxacin taken 6 months before but re-triggered by me taking the Ibuprofen, a drug reported by many to kick of a relapse of symptoms. At first I found it difficult to believe something I took that long ago could still cause me problems until I started to research the drugs themselves, how they work and the plethora of reports of ADRs including death and permanent nerve damage! The drug is part of the Fluoroquinolone family of drugs which are generally synthetic in nature and work by stopping DNA from replicating. They also contain Flourine, a known toxin and the more I’ve read about that the more I’m blown away that we use it anywhere.
My symptoms rapidly exploded not long after this and I developed a whole host of problems including burning skin sensations all over my body, muscle tightness, cramping, pain in joints and clicking joints all over, pins and needles in toes and fingers, pain behind eyes, digestive issues such as burning gut, headache, nausea, fatigue, muscle weakness, terrible insomnia and more. I checked on line and found dozens of blogs with almost identical stories, then support groups on social media such as Facebook, again with thousands of registered people going through the same. So many people have been left with debilitating ADRs that have left them housebound, unable to work and often their lives are permanently changed. I also found sites like Floxiehope which did at least tell stories of those who made it through to the other side.
So here I am, February 18th 2016, 2.5 months since my relapse if that’s the best way to describe it. What are my current symptoms?
- My left leg is still the same and my right leg is also suffering now
- My skin has aged with wrinkles and marks that have appeared
- My left eye is still dry and aching and has the odd sharp pain
- I get periodic burning skin issues
- Occasional pins and needles or pain in fingers or toes
- Insomnia is terrible and sleep is still nearly impossible
- My joints (I mean all of them) click and feel loose
- My limbs get tired really quickly from doing light work
- Stress, Anxiety and Depression are big issues with this
- I’ve lost 12Ib in weight in about 6 weeks, some likely to diet changes and some due to muscle loss as I’ve noticeably lost muscle and padding.
So what am I doing to try to get better?
I’ve cut out all processed foods and hardly eat meat except a small amount of chicken and tuna. Eating lots of fruits and veggies and drinking lots of water. I’m also taking a heap of supplements, in particular:
- Omega 3 fish oil
- Vitamin C
- Multi-vitamin with A, B, D and E vitamins along with other useful stuff (Wellman Original) I’m considering getting the Immunace ones next time as they seem to have higher doses of specific vitamins that might be useful.
I’m trying to carry on as near to normal as I can, working from home, getting out for short walks and a bit of fresh air when I can or feel able. I even managed a trip to see Star Wars at the cinema! But some days I simply can’t focus on anything or my leg or joints might be particularly painful or as today, my eye is sore and blury and I’m fatigued.
For the foreseeable future my life has changed for the worse sadly. I can’t ride a motorcycle at the moment, I can’t run or risk putting pressure on the tendons and causing a rupture in my Achilles. I can drive short distances but my arms and legs get tired and I may have to swap to an automatic car for a while to try and reduce that. Trips I had been hoping to go on are now unlikely this year so I watch from afar as friends plan those holding on to the weakest hope I might feel better in a few months. Life carries on all around me and I do feel like I’m a bystander to much of it.
Every day has it challenges, whether they are physical or mental in nature. I’m lucky to have my partner Caroline supporting me through this, she tries to keep me focused on the goal of getting better when sometimes I feel like everything is falling apart.
You can find good support groups on social media, blogs online and google will no doubt bring up a million links but beware of reading the horror stories. I have to remind myself that thousands use these drugs and likely have ADRs but get better so you never hear about them. Many more get ill, join the groups then vanish when they are well again. Most of those left are either going through it now or have had long term damage done or other medical conditions either as a result of the FQ drugs or because they had them already. It’s very easy to get overwhelmed with all the possible outcomes.
Don’t expect your GP to be forthcoming with help either. Most people find their GP’s dismissive about the chances of this being a reaction to the FQ medication, especially those like myself with delayed onset ADRs. Even though there are thousands of people documenting the same symptoms having take the same drugs it seems only a few doctors have looked outside the box, outside their medical checklists and really read into the reports and studies out there already. And even if you are lucky enough to get your GP to acknowledge that the FQ drug was the likely source there are no direct tests or treatments for the damage done which is sadly at the cellular level. You have to hope your body can fix itself with the right diet and time.
So here I am, in the middle of my own personal nightmare, waiting to see my GP for the second time to discuss my lastest blood tests and my ongoing symptoms. He wasn’t particularly responsive to the whole ADR diagnosis on my last visit and was reluctant to view any research I had done. The reality is you have to research and weed out the junk. You have to try to find out what is going on with yourself because they simply don’t have the time. We get a 10 minute appointment and if I’m lucky that would be every 3 to 4 weeks, what can you really diagnose in that amount of time?
This blog will be a way for me to continue to track my health and dump my feelings as I walk along this road of recovery.