The unexpected neuropathic pain battle – my new plan!

So who said that a knee replacement was the toughest thing I would ever do? erm… me I think. Well I take that back. If you are a knee replacement warrior you will know how hard (and wearing) pain can be. I was sure that was the end of the pain battle for me, until I started with nerve pain in my other leg. Will this thing ever end?

Early warning signs

I noticed a few weeks ago that the ball of my foot had started to go numb when I was out cycling. I put it down to perhaps ill fitting shoes or something because it was always short lived.

Escalating symptoms

That was, until it started escalating to throbbing, itching and stabbing pains in my foot culminating in allydonia type symptoms (pain response from stimuli which do not normally provoke pain). Socks became painful, shoes became painful then walking became painful. Before long I was struggling to walk more than 10 metres.

Time to take action

I had no idea what was going on so I went to see a podiatrist, who was equally stumped, so I went to the doctor. He told me it was nerve pain. I have never had any experience with nerve pain until now, so I had to do some research, because this pain was much harder to ignore, was constant, more intense and did not follow any particular pattern, other than the fact than it was ten times worse at night, making sleep almost impossible.

My reaction

I can very easily see how nerve pain can lead to depression and all sorts of other things very quickly. It is no fun at all. I would go as far as to say it’s worse than any other type of pain I have ever had. And it’s not even the TKR leg, so suddenly my bad leg has had to become my good leg. It has worn me down very quickly and already given me depressive thoughts and brought me to tears on many occasions. My husband is feeling rather helpless. I feel like a failure because I feel like it is one thing after another and I am totally sick of being in pain, unwell and impaired in some way. I am over it, totally over it. Sufficed to say I hit rock bottom rather quickly.

The research

I have done some extensive online research. My symptoms are most definitely neuropathic (nerve) pain. The top causes listed are

• Trauma / injury
• Diabetes
• Vitamin B12 deficiency
• Thyroid problems
• Chemotherapy
• Shingles

I have had a blood test, which clears me of thyroid issues and vitamin deficiency. It also tested for HbA1c which is blood glucose; that was also normal. I don’t have a rash so it can’t be shingles. I haven’t had chemo and haven’t had any trauma. So it leaves me stumped (and still in pain).

What does neuropathic pain feel like?

• Numbness / tingling
• Prickling / sharp jabbing
• Extreme sensitivity / painful to touch that usually isn’t painful
• Throbbing / burning pain
• Itching that is subsequently painful when scratched

It is really most unpleasant, cannot be predicted and is not easily controlled. At the moment it is affecting mostly my left foot (but has mildly started in my right also) which is making tolerating shoes, and walking around actually incredibly painful. I can’t imagine what it must be like to tolerate this as a direct result of TKR surgery, but I know that it can be quite common.

What happened with pain meds?

These quite frankly scare me to death. I have such a bad history with pain meds (nearly all prescribed anti inflammatories and all opiates) that when the doctor gave me nerve pain drugs I was actually almost hysterical. He has given me preglabalin (Lyrica) rather than Gabapentin. I can only assume that is because, from what I read, it is much less likely to cause nausea as a side effect. I started taking it on a very low 1 x25m daily dose (usual dose from what I read is 300mg).

Initial dose; 1 x 25mg each evening. It stopped the numbness but did not deal with the nerve pain. No sickness or other side effects that I noticed, thank goodness.

2 x 25mg morning and evening. It took the top edge off the pain but it was still not enough, the pain was still keeping me up at night (mostly due to the allydonia – even the bed sheets were hurting me). I called the doctor for advice at this point.

3 x 25mg, 2 evening, 1 morning. For the first time since this started, I managed to get some sleep and was not woken up with the pain. But, I was still in too much pain during the day to be able to walk properly. I started to notice feeling slightly ‘odd’ – and more tired than usual.

4 x 25mg (2 morning, 2 evening). Today was the first time I tried this. Within an hour the meds had kicked in enough to make walking much much easier and almost painless again. This lasted 6 or so hours before it started to wear off again. But, although its painful again, it’s not as painful as it was on the 3 x dose, just yet. Next dose due in 4-5 hours. I have noticed the same ‘not feeling quite right’ feeling, which peaked at around 4 hours after I took the meds, as did the fatigue, but if i kept occupied and moving, it helped. I also felt better after eating something, even though I was not massively hungry in the first place.

What next?

I have read that lyrica takes a few weeks to work properly and the side effects often abate as you get used to the drug. So I am hoping that if I stick at the same dose for a few days, it will settle down a bit. If not I will be forced to reduce the daytime dose again. I think I will go to the pharmacy / doctor for further advice as I did not get a drugs information sheet with my prescription.

What about cycling / racing?

I have not ridden a bike for 2 weeks. my foot has been too painful. This alone was making me feel incredibly depressed so I set my brain to work. I suddenly thought, If I can get some bigger shoes with a bit more space (not ideal for bike shoes but it could work) then I might be able to get this crazy nerve pain foot into it. Until I can do that I will not know if cycling is possible or not. When I last went swimming, water pressure was even painful so I have not tried this for a while. But swimming doesn’t worry me, I am confident I can pick that back up again quickly when I am physically able to get back into the water.

Motivated by my followers

While sitting crying over the new pain issues I was now facing, two followers commented on a post of mine on Facebook.

you’ll come back stronger..You don’t quit. You are a warrior..

Brad

I take 1 pain pill every night so I can get to sleep, most nights consist of 4-5 hours sleep if I’m really lucky, God has a plan and I’m just along for the ride! By the way had total knee replacement in April 2013 and 5 heart attacks in October 2013 and a quadruple bypass, was told I had less than a year to live in 2015, I’m still here traveling all over the US In a motor home, living the dream🙏

Robert

Well, hell. That was a kick up the pants if ever I got one. Why have I given up so quickly? Look what I have achieved over the past 12 months, am I really going to let this thing beat me?

So with new motivation, I dug out my husbands old bike shoes. Coincidentally they were 3 sizes bigger than mine and still one size smaller than my trainers. AND… I could tentatively get my foot into them! YAY!!!

Muscle pain side effects

Due to my weeks of limping, the muscles in my leg are all pissed off with me too. at first the calf was screaming, but I ripped out the newly adjusted orthotics and it calmed down a bit. Nevertheless when I ride with any load, it is still not that happy. but, if I ride on an easy setting, all is ok. The pain when walking is now foot (still) and hip / glute. But, this is not aggravated by cycling. 😀

Being bloody minded and motivated

So, in secret while hubby was asleep early this morning, I went to the garage and sat on the bike on the indoor trainer for an hour. It hurt the foot, I had to stop and take the shoe off for a minute a few times, but hell, I managed to turn pedals for mostly an hour, when I have not managed this for the last two weeks. I still feel like my race is a million light years away from being possible, but I am happy that I can do something (and its easier than walking at the moment too!).

What about alternative therapies?

My nerve conduction test (which I am paying for privately to save the public wait list) is not till 26 Nov. I simply cannot wait in this pain situation for that long. So I got back on google to look for some other alternatives.

• Vitamin B12 – being deficient in this often causes nerve pain so I got some from the pharmacy
• Vitamin D – can help alleviate nerve pain – so i got some multivits from the pharmacy
• Fish oil – was also reported to be something that could help so I got some of that too.
• DIET. That warrants a whole new paragraph of its own.

Diet and its impact on nerve pain

Ok, so I know that I am not diabetic (or even prediabetic because I had a blood test to prove it) however almost everywhere I look – blood sugar is connected to nerve pain at the top of the list of likely causes. So, surely this is worth a try also?

I immediately stopped drinking the beer I was drinking at the pub on Friday night, swapped to water and have not had any more since. Within an hour I was starting to feel better already. My all time worst night of pain so far was the previous night. the last thing I had before bed was a handful of lollies. So I threw the rest in the direction of my husband (much to his delight!) and will not be eating any more. Other things I am going to cut out / cut right back on for two weeks include

• no more biscuits, lollies etc at all. I will switch to nuts for snacking
• no cereals or bread for breakfast, I will swap to omelette or back to jumbo oats.
• very little fruits, so I can even cut back on natural sugars
• natural yoghurt, once the one I have in the fridge already has been consumed.
• Warm / cold salads, soups etc for lunches, with nuts for snacks.
• no deserts at all.
• No alcohol
• Cut way back on carbs, limiting where possible to low GI carbs with lots of fibre.

I have no idea if this will have any affect on the nerve pain at all, but hell, it is worth a try, right?

I will report back and let you know how I go. It will surely be an interesting (if not slightly tricky) experiment!