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.

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And so it continues

Just catching up here with an update on Life. I thought the gout was kicking in again 2 days ago but so far it hasn’t but instead I’ve had increased all over joint and muscle problems, fatigue, burning in the joints and skin. FQT symptoms have gone up significantly and my general feeling of well being is through the floor at the moment. Mentally I’m at a low, too much stress, too many problems and unexpected things converging on my life from lots of directions have led to sleepless nights and a brain that refuses to shut up. I’m tired, both physically from the day to day struggle that is apparently life and mentally from the constant pains, worries, up and down emotions of dealing with FQT, work worries and the list just grows.

I keep seeing things on TV, people enjoying life, trekking across amazing countryside, swimming in crystal blue seas, just doing what normal people do and I wonder if I’ll ever be able to do that again. Not having been able to walk properly for over 6 months, limping around all the time, the constant twinges in my muscles, the sharp pains in my ankles, hips, the up and down sleep patterns, the increased anxiety and palpitations that seem to come with that, a constant reminder that my body isn’t right and waiting to “break” with one false move. I just want the ability to enjoy life and I seem to have lost that at the moment.

I try to get through each day as best I can but it’s hard work, never knowing whether you’ll get through without a major incident or if a sudden burst of physical symptoms will kick in and you’ll be back to being a heap of flesh and bones sat immobile in a chair just hoping the latest batch of torture will pass. You just want to be able to go out and do physical things, plan stuff and know that you’ll be able to do them. I’ve never felt so trapped by life, restricted by my own physical abilities and I don’t like it.

Our cat Luna has brought some much needed light into a very dark world. Her wonder and curiosity of everything is a delight to watch. She goes from being a maniac cat running around the house at warp factor 10 to a calm purring kitten sat on your lap in almost an instant.  When your opinion of the world and life seems to fade something like this is a much needed reminder that life can be fun and interesting. I think I want to be a cat in another life!

 

I’m not the man I used to be

My life has changed in the last 3 months and sadly it’s for the worse at the moment. The impact of the adverse effects from the Ciprofloxacin I was prescribed have had a dramatic impact on my quality of life and of those around me. When the plethora of symptoms started to appear, abruptly and almost simultaneously, I went from a relatively healthy and active 46 year old guy to a man that felt 20 years older overnight. I was unable to walk even short distances, unable to sleep, I was suffering ever changing pains and neuropathic symptoms and the end result of this is that my emotions and anxiety levels have been on a rollercoaster ever since.

Am I getting better? That’s the million dollar question that no one can answer. I have seen some improvements, my legs although weaker are not as painful as they were a month ago although this varies from one day to the next. However the muscle loss is very noticeable which not only means I have less strength but also that the muscles tire very quickly. The areas on my legs, arms, shoulders and neck where tendons join to my skeleton and muscles are tender and often give me sharp pains, likely due to collagen damage. My joints grate and click all the time still and I hope that there isn’t more damage being done there. My left elbow has been sore and painful for 6 weeks or so now and isn’t showing signs of improving. I do have much less pain that relates to peripheral neuropathy i.e the burning sensations, painful eyes, twitches, tingles, vibrations etc.. are 90% better. I do have sore/numb teeth at the moment, the odd eye twitch and the odd pain in a finger here and there but it’s not restricting my life.  My sleep patterns have improved since I started drinking tart cherry juice, whether that’s a coincidence I don’t know but I’m getting 5 to 6 hours sleep instead of the 3 to 4 I was getting before I started drinking it so that is an improvement .

The way this reaction has aged my skin, leaving me with wrinkles, age marks and new moles in such a short time has both concerned me from the medical aspect in that I have no idea what processes are going on inside my body to cause that and also from the emotional aspect in so much as I feel older when I look at myself in the mirror, I don’t like that very much at all.

It’s clear that these drugs and many others chip away at our bodies natural defenses and often without it being apparent to us or the doctors around us. Sure, we may appear to recover from an infection but at what cost? What damage has been done that is sat waiting to manifest itself at a later date in some other illness or condition. I was prescribed a drug based on a “hunch” that it might help but not told of the potential risk and I am angry about that. These are peoples lives that may be affected forever, I’m sure that more thought would be taken on prescribing these if the patient was a relative of the doctors or the doctors themselves.

So how am I “feeling” at the moment? Not great if I’m being truthful. Every day I wake up and I wonder how the day will progress, will I have some new symptom or will an old one raise it’s head? I continue to “treat” my condition by eating healthy, taking supplements to try and support the bodies natural healing and trying to stay positive. What else can I do?  The psychological aspect of this is the most difficult to counter, for me at least. This whole thing couldn’t have come at a worse time as I was already dealing with the whole reaching “midlife” situation. The time of life that for many people is difficult to come to terms with and is certainly made worse by not having your parents around anymore. The feeling that each year passes ever more quickly and that the time to do all the things on your bucket list is rapidly decreasing was bad enough but to now have all of that put on hold or possibly even have things you may now never do is pretty devastating. Not that I’m rolling over and giving up, I’m determined to get back to health but some days it feels like an enormous mountain to climb and there is no guide to lead you to the top and no maps to tell you how far is left to go.

I’ve found both comfort and anxiety from researching this condition online. Often we go searching for reassurance and confirmation that something we are experiencing others are experiencing also. This knowledge that we are not alone can at times offer comfort, “I’m not alone after all”, “others are going through the same things that I am”. But it can also have the reverse effect at times when the the harbingers of doom arrive and try to erase any amount of hope you have that you might get better. I’ve seen situations were it almost seems like a competition is going on as to who can have the most severe or long term condition and that every ailment they have must be as a result of “floxing”. Then you read the “oh and I had this before floxing” and “I’ve always had xxxx but it’s worse now” etc.. and you question everything that is being said. The problem is no one really knows whether all the conditions they have are as a result of taking these medications or whether they would have ended up with some of them anyway but it’s easy to put 2+2 together.

It’s very frustrating when you see someone asking for some positive comments about people’s recoveries and the first response is something like “Forget it, you’re screwed, there’s no coming back from this… bla bla bla”. Whether that’s the thruth or not neither party knows because some people, probably lots of people, do get better to some degree. Those comments are not helpful in the slightest and only serve to demoralize the people concerned, which seems to be the goal for some people.

Then again I have made contact with some very supportive people who have gone through or are going through this nightmare. There are groups out there who can offer support and not remove the hope that you will recover. Hope is incredibly important, it’s hard to hold on to, but essential to keep you focused. The recovery stories on Floxiehope.com at least offer a chance of recovery however long that might have taken.

So today I’m not the man I used to be, in many ways. My physical body has taken a beating and I just hope that time will help it recover. My emotions are up and down from one day to the next and that has a huge impact on my outlook for the future but I’m holding on to that future with both hands.

 

 

 

 

Joint pains, Insomnia and Muscles

I’ve had a day or so off from updating the blog and wanted to do an update on how things are progressing. I’ve had a tough few days mentally unfortunately, the changes I feel in me every day both physically and mentally, the constant pains and discomfort just take their toll, that and my sleep patterns still being blown out of the water. I swing from anger to sadness over and over during the day. I’m angry that I let myself get into this condition and didn’t research before taking the medicine like I usually would. I’m angry that doctors and pharmaceutical companies produce drugs that they know can and do cause harm yet have no accountability or plan to treat those like me who have been poisoned by their drugs. I’m sad that my life has been changed for the worse, that my health will likely not be the same, that the things I love to do in life I can’t anymore and I have no idea if I will again or when. I’m sad that this has impacted on my partner and it’s not just me dealing with this. She has had to deal with seeing me fall apart, watch a grown man cry from the mental torture that this induces and she doesn’t know when things will improve and how much. I am lucky though, she accepted early on that this was the result of my Ciprofloxacin, something lots of people struggle with is getting family and friends to understand the severity and hopelessness of it all. She has been so supportive and positive, driving me along when I just want to lay down and wallow in my own self pity.

Every day I wake up from what little sleep I’ve had and I feel “groggy”, my legs are always tight first thing, often my shoulders and arms are also. My head takes a while to focus on anything and my eyes are generally tired. I have a routine of sorts in that I get up, have a healthy breakfast of some description, then go clean up and get ready for the day. I then get on with some work if I can or if I need to I’ll ease in with some music and catch up on the world news and social networks.

I guess I’m in the acute phase of all this as I literally do feel like I’m falling apart. Here are the current symptoms:

  1. Tendon/Muscle pain and tightness in legs (top to bottom), Achilles, arms, fingers, shoulders and neck. If I stretch any muscle, e.g. I bend over and pull the hamstring or reach for something and pull the back, the muscles immediately want to cramp.
  2. The neck pain is worse at the moment, there’s a burning pain, the bones at the top of the spine seem more prominent and the whole left neck muscle is sore. The muscle itself has decreased in size quite a lot as has the muscle all over my body.
  3. My left elbow is slightly swollen and sore, again I had this in my original reaction months ago but it went pretty quickly back then, this has lasted weeks this time.
  4. My head has the well documented “fog” that comes and goes, no doubt driven by the damage these drugs do throughout the body, the fatigue and anxiety. I can at least get on with things most of the time unlike some people and I find the distraction helps but again that is most of the time.
  5. My skin has changed drastically, it has aged, wrinkled, dry, thinned and I have a load more moles and age type spots. It’s literally like I’ve gone from 46 to 70 in 2 months. It was weird that my toes nails have beau lines but when I discovered Ciprofloxacin was a chemo drug I found identical images of people’s toes who were recovering from actual chemo.
  6. Weakness is a bit problem which is a side effect of the muscle loss. Even simple tasks are tiring, carrying a tray of food, lifting a small bag of clothes, standing for any length of time just all drains me.
  7. Insomnia continues to be a big problem with 3 or 4 hours sleep followed by restless dozing the norm at the moment.

I know from Floxiehope and various sites that recovery is measured in months and years not days and weeks. I know I need to be patient, keep eating healthy foods, keep taking supplements especially magnesium and antioxidants and try to stay positive, easier said than done!

I think that I dodged the bullet only to be hit by a ricochet with this. My original “floxing” event, back in May 2015 gave me unpleasant but relatively short lived symptoms. After I stopped taking the medication, 8 days in, the symptoms I had did fade over the next 2 or 3 weeks. I had a good 6 months of normality, did active things, went to the cinema, on holiday, sailed, kayaked, rode motorcycles, I just lived. I would never have suspected that the ADRs could return at a later date or that taking something as simple as a Ibuprofen painkiller could be the catalyst for a relapse of symptoms 100 times worse than the original episode. And that’s the problem, patients don’t know, doctors don’t know and pharmaceutical companies don’t know what the real consequences of taking drugs will be for each individual person and their unique genetics and medical history. That means that there are likely hundreds of thousands of people out there with illnesses likely as a result of medication they took in the past and they have no idea.

I can’t go back in time, if I could I’d do a lot of things differently in my life and there’s a lot I wouldn’t change but I’d never have taken that leap of faith that the doctors know everything about the drugs they prescribe and can guarantee you will be OK. I have to deal with this now for the foreseeable future and do everything possible to mend, but if I can get the word out, stop anyone else from taking risks they don’t need to, make people think twice then I will. If I can research and find studies that might point to cures I’ll try and find them. In the mean time, I’ll try and get through another day of pain and anguish.

 

Today “I Hurt”

After a bit of an up and down day yesterday I went to bed with a headache brewing and feeling pretty weak and tired. I’d taken a small drink of tart cherry and sprayed my limbs with magnesium oil to try and ease the discomfort. I woke up at 5am and I didn’t feel good. My head was throbbing, my arms, neck, shoulders all hurt. There was a pressure behind my eyes which felt like my eyes were being pushed out from behind.

I couldn’t settle, the pains were quite intense and the head pain evolved to include burning pains. I couldn’t believe I was going through this again, like I’d gone backwards weeks in time.

I grabbed a cold flannel,  put it on my head and lay back trying to at least get into a position that didn’t hurt. I dozed for a couple of hours and eventually woke properly. And so today I’m aching and my neck, shoulders, arms, legs all ache. My head hurts and eyes feel really tired. I have to remind myself this is early days, it’s going to take time, keep focused and positive and don’t fall into the abyss of doom!

I can see how easy it is to simply roll over and give up. Sometimes the mental torture is extreme, you think you’re going to die, you feel like your body is falling apart bit by bit which to some degree it is. I’m determined to get better, it will take time and I will have bad days I’m sure buy I can’t rollover and give up!

My Story

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, 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:

  • Magnesium
  • 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 taken 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.