I’m broken.

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extrawheel cycle touring chile

I added some more to my symptoms so they are up to date

You might have noticed the lack of posts on this site since early 2013. The short story is that I’m broken and haven’t been on a bicycle since December 2012.

We have been busy with a new house, new jobs and a wonderful dog, so in the last two years we haven’t just sat around twiddling our thumbs.

But settle down for a long read. :)

Regular readers of this blog might have read that we had to stop cycling in New Zealand and cut our tour short because what happened to me. Shooting, constant, throbbing pain, just like when you hit your funny bone, from my fingertips on both arms, to my shoulders.

Numbness, pins and needles in hands and arms and the lack of feeling. If I was holding something, say a glass, I could see I was holding a glass, but I couldn’t feel if I had applied enough pressure to lift the glass.

I had to ask Peli to pack my panniers in the morning since I couldn’t use my fingers and hands or make a fist without using all my strength and enduring extreme pain. After 30-45 minutes I could use my hands and arms, if I did grin and bear the excruciating pain.

Here is a rundown of how my symptoms have changed:

November/December 2012 – October/November 2013
– Severe numbness, pins and needles, pain like hitting my funny bone shooting from fingertips to shoulders.
– Any vibration causes pain to flare up.
– Can’t for a few hours in the morning make a fist without extreme pain and using all my muscles and strength.
– Can see I am holding a glass of water but can’t feel if I have applied enough strength to lift the glass.
– I also had extreme pain in my arch of my foot and up the lower leg when standing up in the morning impossible to walk without the fear of falling, a bit like plantar fasciitis, but the pain subsided after 40-60min moving. Pain came back if resting, say watching a movie, reading a book.

How I managed it and what happened:

I tried painkillers, more rest days and a different set-up on my bicycle – nothing we did made it better. Even pushing a shopping trolley around caused extreme discomfort, numbness and impossible make a fist for 20-30min after. When we rented a car so we could go walking and I could be the support vehicle for Peli. The vibration on the gear shifter and steering wheel set off the pins and needles.

We went to our GP as we arrived back in the UK in Feb. 2013, who then sent me to various specialists and after long waits between appointments, we have yet to find out what is going on.

Carpal tunnel syndrome or damage to the ulna nerve it is not. I have had three nerve conductions studies done and there is some damage to the carpel tunnel on my left hand, but not enough to cause the rest of my symptoms.

I have had a full body MRI scan done, focusing on my brain, neck and my spine. This only showed normal wear and tear to a 40+ old person, to the neck area – T1/C7.

I have had blood test to see if it could be – Lyme disease, MS, low B vitamins or lack of iron etc. They all came back negative for the doctors. No sign of diabetes, thyroid or the like – I really got the doctors baffled.

We even tried to borrow a recumbent tricycle, from a good friend (thanks) to see if that could help, it didn’t cause me any problems with my arms. Though where we live we don’t have many places to ride it, too hilly for a trike.

I do tell a lie, I have been on a bicycle since this started, but only 3-4 times out to a local ruined Abbey about 6 miles away. Though, after a few miles I can feel the discomfort coming on strong and on the last hill is painful, and this just causes me to suffer for 2-3 days after.

September 2013 – March 2014
– Numbness and pins and needles less than before but still painful.
– Fear of lack of grip. Don’t have the last turning ‘oomph’ to tighten things, e.g. bolts.
– Not sure I am holding tools or objects enough to use them or lift them.
– Can feel sharp pain at joint points: wrists, elbows, shoulders, where nerves go, but not really pain in muscles.
– The pain in feet totally disappeared after taking 2 antibiotic pills for middle ear infection. Even GP was baffled.
– Was given Amitriptyline for the pain, but it made me sleepy, dizzy, slurring words, talking nonsense, stopped taking after two pills. Felt like I was high on bad drugs.

How I managed it and what happened:

I had a second MRI scan on my neck area to see if it was the brachial plexus that had been damage but the second specialist said it was not.

I have asked if pilates, yoga, swimming or physio would help. The consultants and specialists just shrug their shoulders and said they didn’t think it would harm it, but it will not help it. From what I have heard from friends who have done so, they all feel happy and better after a few sessions.

Though I’m dragging my feet, because every time I work, do cleaning or DIY or just stay up late chatting to a friend, I know I will suffer the next day or longer. Both from the extra moving about/exercise and that when I’m tired I will sleep deeply and don’t move around when my arms starts to hurt.

The good news is that I do normally sleep lightly and wake up every time I feel the tingling in my hands and turn around and shake some blood/life into my fingers and hands.

March 2014 – Feb 2015
– Numbness and pins and needles slightly less.
– Extreme exhaustion. Totally drained for a couple of days after work.
– Have to think about breathing when tired, the upper chest is constrained but not wheezy.
– Physically and mentally drained. Had “micro-goosebumps” — fine static tingles, not visible — coming from my arms, going up to head and down my back.
– Hot flushes with goosebumps and I feel dizzy and extremely exhausted, nearly fainting and it is draining mentally to concentrate or do things.
– Aching, muscle exhaustion moving from arms, to neck, running down back and into legs over a day or two.
– I have to really concentrate to be able to move my limbs.
– Painful swollen fingers and hands in the morning that takes a few hours to go down.
– In the last few months the extreme pain in my feet has come back, especially after two days off work, and standing up after rest, pain slowly subsides after half a day’s rest.
– When it is bad, after 2-3 days work, where I normally should be 5/6 out of 10 tired, I’m 10. It is even painful to wipe my bum. Scared of taking a shower, since I’m so weak and not 100% sure of my legs.
– Dropped two bowls into another and broke all three when washing up the last time, no grip.
– Last extreme exhaustion episode after working took three days to get over.

How I managed it and what happened:

I had an asthma test, since I struggled with breathing when very fatigued. I really had to think about how I took a breath, if I didn’t, I felt out of breath like I had just run hard. I got the all clear there.

The good news is that the shooting pain like a hit of the funny bone, has nearly gone away, when I don’t work. I sometimes work in a local bicycle shop and the boss there has been very good to me, letting me have days off to go to all the tests and appointments I have had. Which I haven’t done since Nov. 2014 because of low season. The pain is there when I do work.

Sadly putting in two days work means that the rest of the week I’m out of the count, resting. Which just ruins my time together with Peli.

The last two really bad events, while working 2014, have had very sore swollen fingers that took a day to go down. To get “fully” recovered. e.g to get to a place where the problem isn’t causing me any debilitating pain or tiredness takes up to three days.

The more I work I do and tired I feel, the more I have to concentrate and double check what I do. I can’t trust my grip on the tools and fear that they will slip and damage the object I’m working on. I really don’t have the “oomph” to just give that bolt/nut that extra turn to make sure it stays put. This drains me more and therefore I have spend more time to think about simple day to day things, lovely vicious circle.

The bad news is that numbness and tiredness (like after a day digging your garden up after neglecting it for a few summers, but ten-fold, that totally drains me and moves from my arms to my upper back then lower back and legs) is still there.

The last few months we (the doctors and I) have become sure that I’m suffering from mild CFS/ME (Chronic fatigue syndrome/myalgic encephalomyelitis).

Though no explanation as to what started it all or the cause of the pain which is still there.

Other than that my nerves and immune system had been kicked into a panic and they are over reacting – by something which probably have gone and left by now – and I stuffer “pain memory” from that.

I have figured out that, if I have a day off before an event – work or say a long walk – and a day off after, I feel OK.

For example, I can work a Tuesday and a Friday but no days in between as I need two days off in between the working days, one to recover and one to prepare myself.

And I really mean proper days off. So no little house chores or hobbies, just sitting around. On bad days I can just about concentrate enough to watch a simple movie.

Which sadly kills the spontaneity of just popping out for a walk, shopping or going to a cafe to visit friends.

For example: A gentle swim in a local river last summer, less than a swimming pool length, with no current to speak of.

It was a beautiful hot day and we wanted to have have a swim with our dog. That set me back three days, where the most exciting thing I can do is nothing.

As one of the medical people I have meet said – how much does it cost? Would it be worth the “expense” doing X before doing Y. Is it ok for me to be a bit tired while doing something, would it drain me totally and do I have enough time to rest before I do something new?

The worst part is when I spend too much and hit the wall/ceiling, is that it takes a long time to save it up again.

I find that if I have a rest the same length as the event will be, before and after I can just about keep going through the day without suffering too much.

So a typical day, when I’m not working is: get up walk the dog 30-40min, rest 30-40min, then rest for say 30min because I need to the washing up, wash up, rest for 30min, then rest for 60min because I need to do the shopping, do the shopping, rest for 60min after shopping…

Keeping active for up to 1.5-2 hours is my max in a day, without a break. If I go longer and don’t rest enough, I need to take out of my “savings” for tomorrow’s energy.

A few weeks back we did a 1.5 hours walk and straight after went shopping. That meant that the following day, half of it was spend on the sofa doing nothing, because I went into the red.

I found that when I’m between 100-80% energy level I’m doing ok, just like before. Between 80-60% I start to feel tired and weak, need to do the rest before and after technique.

When I hit 60% the energy level starts to nose dive double fast. Upon hitting 40% I hit rock bottom right away.

If I don’t start to rest before hitting 60% I often can’t bring it back without a good rest; I need at least a night’s sleep. I really have to stop, that “just few more minutes” to finish the job is bad, I really got to stop dead, just leave it where I got to.

Hitting 40% I out for the count for a few days.

If this makes sense, I got only 60 “credits” but need to save up 100 “credits” – my zero is 40 not zero.

So we are now working on getting my days sorted to that I can manage the CFS/ME and then build up from there. Sadly this is a slow process and if I push a bit to hard I risk the need to start all over again.

Feb 2015 – June 2015
– Haven’t worked since Nov 2014
– Really have to rest before and after I do anything.
– Remember to stop way before I get tired or else I bunk/hit the wall.
– Longer to recover after overdoing it.
– Still get waves of pain running from fingers up arms to neck down the back to legs when recovering.
– More often suffers from Brain Fog.
– Tried to do less just like Leeds CFS recommended, but became more lethargic, tired, weak, struggling to motivate myself, hit the wall much easier, got tired quicker, took longer to rest and regain “power”, felt bad all the time (whole week). Where before I knew I only had 1-2 days down time and had the energy to do thing e.g help people with DIY or do house chores.
– Went back to my own system and felt better, well as good as it gets while suffering.
– Ears has become very sensitive, light breeze or colder temperature I feel pain in the inner ears. Every day I forget just for a short time to cover my ears, the next day I wake up with blocked nose, pain in inner ears and pressure in sinuses. Feeling like I’m coming down with bug.
– Pain in bottom of the feet is back, flares up when over tired, takes a few days to subside to a bearable level.

June 2015 – Sept. 2015
– Pain in the bottom of the feet is worse, every morning I wake up with pain. Not as bad as in early 2013, but enough to struggle to walk for the first 20min.
– Pain in middle ears is constant, nasal spray from GP did only worked for a few hours for a few days and then went back to “normal”. Have to wear ear warmers every time while outside or else sharp pain in middle ears and sinuses. Booked in to see a ENT specialist on 9. Sept.
– Pain in hands and arms nearly gone, got good days, but as soon as I do anything it is back. Can be active for about 2-3 hours a day, with rest between each job/chore/activity, more than that the pain comes back in arms and hands.
– Very tired feeling in the back of the legs, not front at all, from buttucks to feet every morning. Arms feel heavy and tired every morning too. Takes about 20-30 min to go away.
– Wakes up 2-3 times a night with pain and very numb and tingling feelings in arms and hands depending on which sided I have slept on.
– If I over do it it takes a long time to get over the fatigue, need a long sleep 15-18 hours.

Sept. 2015 – Present day
– From about late Sept. I have felt the cold. Remember! I have been in shorts all year around. Hot water bottle in bed. Last to put on jumper etc. Now need extra layers on when out, inside over night in bed. Now don’t sleep with windows open (even in Sept. – used to have them open all year). Takes a long time to get warm. Started overnight, one day to the other. Even when the weather was still Autumn/warm, and a time of the year where I would have been happy with just shorts and a base layer. Bought my first pair of trousers in 20 years!
– Can’t lift my arms above 45deg. to the side, without pain, weak no oomph no strength. Started in early Nov. again.
– Feet has steadily become worse, no good days anymore. Constant agony in the AM, staggers around for about 30min not sure if I can trust my feet/legs. Gets somewhat better during the day or am I getting used to the pain doing the day.
– Pain in feet crawls up the legs up to the knees.
– Pain often from lower back down the nerve to my right foot.
– Fatigue takes longer to get over.
– Haven’t been able to do longer walks or my hobbies, because I know that I don’t have the oomph to do it. And I know that it will take long time get over it. And will be in pain.
– Since I have been on steroids for my ears, I have had more set-back, fatigue takes longer to get over, felt the cold.
– Often have numb hands/arms and sharp nerve pain in hands/fingers.
– It has become harder to do daily chores, takes longer to get over them.
– Feel more tired, weak and out of breath when out walking the dog, over the last few week (Late Oct./Start Nov.), at the end of the walk, where I used to be just fine.

One day I will back out on my bicycle, eating that slice of cake you had your eye on. :)

NB: If you fancy reading more – click here. It is on a cycling forum that we use. We first reported the problem there and have had great help as the condition progressed. We post there under woollypigs and peliroja.

If want to see all the meeting and dates I have had with my GP and NHS, click here, it is a Google Docs. I didn’t bore you with that story – long wait, misplaced appointments…

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