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!

Muscles, Tendons, Ligaments

A few more weeks pass by and my body continues to struggle dealing with this illness or condition, whatever we label it. I’ve had a steady decline over the last couple of months with increasing amounts of leg pain and mobility issues. Some of this I believe is down to Peripheral Neuropathy, in particular the burning which is fairly constant, twitches and weakness. I’m more aware of the muscle loss now than I was, I can see it, my shape has changed!

The biggest issue I’ve had is with mobility due to the problems with the muscles and connective tissues. I’ve had ups and downs this year, varying from hardly being able to walk to being able to wander around town even if there was pain doing so. I’ve not been in a situation where I could consider hiking anywhere and anything more than a slow walk has always been out of the question. Putting any stress or strain on any of my limbs or muscles causes immediate pains, pin prick sensations, feelings of tearing or burning.

What has been more of a concern is the decline with little improvement and no real “up” moment now for quite a while. I’m currently able to limp around the house, I can get out and wander short distances as long as I take breaks and I can drive. I even managed to fly this last weekend, it was only a 50 minute flight, but I had to deal with plenty of stairs and walking and I made it through with absolute grit and determination because it hurt, a lot.

My hip on the left, my back on the right side and my thighs have all been problematic, weak, suddenly giving away if I turn a weird angle or twist a certain way. It gets me down, of course it does, you’d have to be made of stone to not feel depressed when someone 20 years older goes flying up stairs that you can only manage 1 step at a time. I know rest is important but I also know too much can be detrimental so it’s trying to understand that balance. Last thing I want is to end up pulling or tearing a major tendon and having to deal with the recovery from that but the truth is I simply don’t know what damage has been done and is continuing to be done.

The best way I can describe this is that it feels like I’ve gone to sleep and drifted into a nightmare. A nightmare where my life has been taken away and I’m trapped inside a broken body that looks like mine but isn’t! I’m living groundhog day, the same routines, the same pains, the same future and it’s over and over except the symptoms change, in an every spiralling fashion, unpredictable, debilitating, ruining plans, making life a misery.

I guess I’m doing what so many have already have done, looking for answers, looking for hope, dealing with the anger, the pain and the sadness. Why did I take the damn pills? Why didn’t I research before I took them? Why did I blindly believe the consultant who gave them to me? I still relatively young, possibly only half way through my life yet it many ways right now it feels like I’ve had my life and this is it now. I “hope” that my body still has the ability to recover, that not too much damage is done. I mean I’ve not abused it, I rarely drink, I don’t smoke nor ever have. Yes I’ve maybe had a sweet tooth and probably could have been a bit more active at times but I’ve been healthy, gone through periods of visiting the gym regularly, did Kung-Fu  for a while, did Tai Chi for a while, cycled, did a bit of running many years ago etc..

The Ciprofloxacin just seems to have aged me from the inside, damaged anything that needs collagen and stopped my body repairing itself properly. My muscles, skin, teeth, eyesight and so much more has been impacted, quite unbelievable. Yet NO pharmaceutical company offers a solution, a majority of doctors won’t accept the drug caused the condition and those who do accept it have no treatment they can offer. I’ve read horror stories of people being treated like idiots by medical professionals (I use that term loosely) who have financial interests in prescribing various drugs. The USA seems much more aware of risks and the FDA recommendations compared to the UK agencies such as NICE and MHRA but the doctors still offer no solutions over there either.

I’m seeing the consultant Thursday 6th October, the 7th year anniversary of my mothers funeral as it happens. I hope she can advise and help in some way, she does at least accept that Ciprofloxacin caused all my issues but has stated that time is the only real healer.

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!

 

Something Positive

I’ve had a few up and down days with the health but there’s a some good news in the mix I hope. Firstly the Gout seems to have subsided but I’m left with joint issues in the big toe and the joints under the foot. Along with what I believe is “Burning Foot Syndrome”, a small fibre neuropathy issue which may be related to the Gout or Floxing I don’t know.

My general well-being has been mixed, had some jittery days, the odd palpitation here and there, weird head, tired a lot of the time. Now this may be simply where I’m tired and I’ve not taken any supplements for a couple of weeks whilst suffering the Gout or I’m just going through a phase of some sort. Yesterday was a difficult mental day for me, it was my mothers birthday which is always a mix of emotions since she passed away.

But there’s some interesting news on the health front. A friend passed on the details of her rheumatology consultant so I dropped her an email. She replied and suggested I call her which I did yesterday. She was very friendly and explained that she had seen a few people with ADRs in the past and would be happy to try to help although she did state that often time is the main healer. Happily she gave me the details to pass on to my GP. As it happens my GP appointment was later in the afternoon! So I spoke to him about the Gout, to which he currently wants to do nothing and just watch and see if I have another episode. I then brought up getting a referral and although initially he was reluctant to refer me out of the area, I explained that she was aware of my situation and had agreed to see me. So he took her details and said he put in the request and hopefully it would be approved.

So fingers crossed I’ll get an NHS referral and will get to see her in a couple of months (yes months… this is the UK) However based on how far away that appointment might be I have already thought about having a one off private appointment with her to get the ball rolling. Whether she can help or not I’m not sure but if she can at least check for other issues and rule them out then that is going to be a step forward for sure.

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.

 

Feeling pretty tired

It’s been a tough few days dealing with this. I’ve had some better moments only to be knocked back hours later. The psychological effect of this constant up and down can’t be explained adequately. You are constantly in a cycle of believing things are improving followed by a crash.

After a better evening Saturday and probably a good 6 hours sleep I felt OK yesterday morning. When I say OK that’s a relative expression in that I felt OK compared to recent symptoms. I had a lazy morning and rested. I decided to grab a short walk in the afternoon just to keep the legs stimulated. But my legs were tired, the muscles tighter than recently and I felt weaker again. I managed a short walk but decided to head home earlier than I wanted.

I had muscle tightness and cramping sensations when I got back so decided to take a epsom salt bath soak. I lay in the warm water listening to more Floxiehope Podcasts,  looking for inspiration and a positive vibe to stop me spiraling down again. That offered temporary relief but it faded pretty quickly.

Caroline made us a lovely veggie meatloaf for dinner which I enjoyed although I struggled to get through eating the meal due to my tired arms. I retired to bed by 7.30 and read for a while, caught up on social media etc..

My neck was in a lot of pain by now, it’s been pretty sore and weak for a few days. The skin is tender, the muscle tight and my joint at the top of the spin is hot and painful. The muscle has reduced and I expect the joint is weakened by the Ciprofloxacin. I found being a passanger in the car yesterday for a short time really aggrevated the issue.

I was still awake at 23.00 but tired so tried to settle. I managed to sleep until just after 3am again and woke up feeling pretty dire. My head hurt, muscles ached, heart raced and I felt pretty awful. I ended up dozing the rest of the night and couldn’t sleep again.

I dragged myself out of the slumber and realised I was feeling pretty sore today. My right arm is twitching a lot which it’s never done before. I’m feeling drained and emotional again, even shedding a few tears whilst Caroline comforted me. She’s been a rock for me during this, keeps me from diving into a real depression and gives me a reason to want to recover from all this.

Today I’ll try a mixture of rest and work. Hopefully things will improve for a while during today.