Anxiety

Anxiety, stress, tension, worry… Whatever you call it the effects on a person are substantial. The physical symptoms which manifest themselves as a result psychological issues that you have little control over can be debilitating and upsetting, leading to further anxiety and depression.

I first encountered the monster that is anxiety some 14 years ago when dealing with a whole bunch of life stresses, long working hours and the sudden death of a friend due to suicide. I suffered a massive panic attack one morning on my way to work with such extreme symptoms I couldn’t believe there wasn’t some physical illness or condition causing them. That morning I ended up in the Emergency department of a hospital in London after I was carted off in an ambulance as a suspected heart attack case. Some 4 hours later I was discharged after a plethora of tests all of which indicated no problem except for rapid heart rate.

So began over 18 months of learning to deal with anxiety and stress during which I was hospitalised 2 more times, 1 of which was incredibly distressing as they struggled to slow my heart rate below 140 resting and they resorted to using some pretty hard core drugs requiring me to be taken to the crash room in case my heart stopped. Thankfully it didn’t but they still couldn’t slow the heart rate so I remained in hospital for a further 4 days. When I eventually made it home I struggled with weird symptom after weird symptom. Dizzyness 24/7, muscle spasms, headaches and weird pains in my head, palpitations, insomnia, fatigue, twitching, odd burning sensations, adrenalin rushes, digestive issues and many more. I did CBT, read a lot of books, saw a therapist and learnt how to deal with it all for the next 8 years, mostly.

However the last 6 years have thrown a whole raft of stressful situations at me. First was losing my mother to cancer just 4 weeks after being diagnosed. Then my marriage broke down and a difficult divorce followed. My father was then diagnosed with cancer and died a year later during which time I developed some issues with my prostate which lasted around 1.5 years. The end result of that was the prescription of Ciprofloxacin that has left me physically and mentally tortured since May 2015. On top of this are job worries, day to day stresses and the world we live in which is stressful in itself just to be a part of.

This last year I’ve had good days and bad, some of the bad days have been really very low indeed. Depression has been a problem with periods where I couldn’t see point in the future, I struggled to enjoy anything, I would choke up or start to cry out of the blue. Recently I’ve been dealing with increased palpitations, arm pains, sleep issues, digestive issues, fatigue, tight chest and the usual anxiety symptoms. The knock on effect is feeling fed up and depressed about this constant battle of trying to beat the floxing, which in turn leads to more anxiety. So I’m going to try to address that, meditation, more sleep, swimming, peace and quiet to start with. I’d like to do Tai Chi again which I did years ago but physically I can’t right now. I think I’ll remove stimulants from my diet such as coffee and reduce sugar and salt to see if that helps. I’m sure in time this will pass as I hope the floxing will also, I just wish it would hurry up!

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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.

 

I managed some sleep!

My anxiety levels must be up at the moment as I’ve been getting palpitations over the last few days. I’ve had them on and off for years but it’s never a pleasant feeling when it happens. Last night I was feeling a bit shaky and then muscle cramps kicked in again so I decided to call it a day and go to bed. After a quick squirt of magnesium oil on my arms and legs I climbed in expecting a restless night. I dropped off fairly quickly and woke up about 5am, actually getting a good 5 to 6 hours of reasonable sleep!

I’m still a bit tired this morning but happy my body and brain had a rest for a change. The sun is out at the moment, birds are chirping outside and it sounds like spring. Think I’ll take a short walk and then get on with work and the usual chores.

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.