Home » Health & Wellbeing » Small Fibre Neuropathy

Category: Small Fibre Neuropathy

Living with Chronic Illness – How We Support Each Other

It’s no secret around here that TJ and I have (more than) our fair share of health troubles. Between TJ’s Small Fibre Neuropathy and my combination of Endometriosis, Hypermobility and IBS, life can be challenging to say the least.

It would be hard enough if just one of us were struggling, but when we’re both sick it makes it very difficult to support each other through our darker days. And yet, support each other we do… and we do it well!

Living with Chronic Illness-How We Support Each Other

Some of this comes from the fact that we both know exactly what it is like to feel exhausted the entire time, to have our energy zapped by constant pain (and other symptoms), and to feel that life is entirely unfair at times, regardless of whether this is just our perception or we really are facing discrimination due to our illness.

But the rest of it simply comes from the fact that we love and care about each other, leading us to find ways through the tough times even when it feels completely hopeless.

The past few weeks have been particularly troubling for us, as TJ has had to come off yet another medication due to side effects that are simply unacceptable long-term. He is doing much better now he is off the medication, but it does mean we’re in even more uncertain waters in regards to management of his pain and the extra health issues the medication caused.

And amid all of this, my health has taken a drastic turn for the worse, with more bad days than good (I’m talking 3 day migraines, crippling nausea, indescribable exhaustion). Simply surviving has become a challenge, and at times like this it is more important than ever that TJ and I come together to support each other, rather than falling prey to the misery that chronic illness can bring.

But what does this actually mean? What is it that we do that makes such a difference to how we survive these challenges and even find joy in the midst of them? I’ve been thinking about this a lot lately and here’s what I’ve realised…

We talk. A lot. It sounds simple, doesn’t it, but it really does make all the difference. It doesn’t matter what we talk about, the most mundane conversations can lead to some really interesting insights into what is going on inside the other’s mind. I’m very open and honest and blurt out what I’m thinking and how I’m feeling without any prompting most of the time, but TJ finds it more difficult to express these things. When we make time for each other in this way, it all becomes easier.

I’ll admit that I find it rather annoying when he hassles me to get ready for bed as he’s tired, only to begin telling me all sorts of things once the light is turned out and I’m about to drift off to sleep, but those talks we have before sleep are often some of the most telling! And that’s another way that we support each other – we give each other time. No matter how tired we may be, how inconvenient the timing is, or how many jobs need doing, we make that time for the other person when it’s needed.

Heightened emotions mean that outbursts can come at the most inopportune and unexpected moments, especially if we’ve been holding them in all day to get through everything else we needed to. Knowing that the other person offers safety in which we can let go and show how fragile we’re really feeling makes a massive difference. We both understand what it’s like to lose it, and so we give each other grace for those moments when we’re acting irrationally or taking it out on the other person, when they are the person who least deserves our wrath.

We make compromises. Big ones. When you’re chronically ill, you have to learn to know and accept your own limitations. It means that so many of the things you always thought you could have are no longer attainable without having a serious impact on your health and well-being. If you know anyone with a chronic illness, chances are you’ve heard of The Spoon Theory. TJ and I are well versed in this, and we both know that right now in our lives we are over extending ourselves massively simply to get by day to day… we have to work to make ends meet, we have to find the energy to put food on the table, and we need to provide a safe and happy environment for Little Man. By the end of all that we are usually beat… but we still want more.

This is where we find that it is important to know which compromises we can live with and which we can’t. We can live with a certain amount of pain, but we cannot push ourselves so far beyond our limits that we become unable to function. That financial security we crave is nowhere near as important as being well enough to enjoy what we do have. The higher paid job is not worth the added stress that impacts on our lives. And the larger family we’d have loved is not possible when we are both so ill. We get that. All of it. So we focus on what is most important to us – family, health, and happiness.

We work together to find new ways of surviving this crazy life of ours – we research our options and make changes accordingly. When I tell TJ that I want to try changing my diet to check for yet another food trigger, he does not question it but supports my decision. And when he tells me he wants to try exercising in a different way, I say “let’s do it”. When you’re chronically ill, you’ll try anything to find a better balance in your life and avoid triggers, even when you know that your latest idea may not work at all. Having someone support you in this rather than dismissing it from the start can make all the difference.

And finally, when all else fails, we care for each other. When, despite our best efforts, we are struck down with such severe symptoms that we simply cannot do more than sit in bed and cry, we allow this to happen. We allow each other to scream, shout, and cry about the injustice of it all, how we’re feeling utterly defeated, and that things will never, ever get any better. We’ve learnt, through the years, that sometimes there isn’t an answer, that sometimes we cannot fix it for the other person, and that despite the heartache that brings us both, we have to accept it.

And so we cry with them, allowing the grief to surface, safe in the knowledge that together we can get through it. None of this takes away the pain, but it does make it far easier to bear. It’s a dance that we have learnt together and will continue to follow and adjust throughout our lives. Living with chronic illness is tough, supporting someone with a chronic illness even tougher at times, but together you can get through it.

Tell me, how do you support your loved ones when ill? And what support do you find helpful when you’re sick?

Some Good News At Last

If you’ve been following us here at The Patch for a while, you’ll know that TJ has been suffering from some truly awful symptoms that have been getting worse over the past year or so, to the point where we were seriously beginning to worry about how bad it would get.

We’ve been to appointment after appointment, fighting hard for a diagnosis and treatment, and TJ has struggled with balancing out the side effects of pain medications with the pain itself (which is better: being in unbearable pain and struggling to function, or suffering from lower levels of pain but still struggling to function because the pain meds make you so woozy and sick?!)

The nearest we have got to an answer is a “probable” diagnosis of Small Fibre (or Peripheral) Neuropathy. But as this kind of neuropathy is most commonly seen with Diabetes, which TJ does not have, the neurologists we have seen have decided to simply class it as “idiopathic”. This basically means they don’t know why he is suffering from these symptoms.

Two separate neurologists at two different hospitals have given this answer to us, leaving us feeling like we just have to accept that this is it. And as TJ has not responded well to the “typical” treatments, he has just been given one pain medication after another. The two which were most likely to help had such awful side effects he could not continue on them.

But what about the good news, I hear you say?

Well, today we saw a pain specialist at our local hospital and I cannot even begin to tell you how much I love this man for actually caring enough to look at every single option, including a referral back to the neurology department to try and find out why TJ is suffering from these symptoms.

Finally we have found a doctor who, of his own accord, agrees with us that it is ridiculous to give the diagnosis of “Idiopathic Neuropathy” when they haven’t ruled out every option. Out of the depths of his memory he remembered that exposure to certain metals can cause neuropathic symptoms, and as TJ used to be a plumber and first started getting the very early stages of these symptoms whilst still working in that field, exposure to metals such as lead could be an explanation. It might not be that, but it is certainly worth ruling out!

The doctor we saw today is writing to TJ’s GP to recommend a referral back to the neurology department to look into this further. But even more astonishing (to me) is that he also looked up the name of a neurosurgeon at that same hospital who he thinks TJ should see to discuss the possibility of a Spinal Cord Stimulator. The reason for this? Because, as the doctor said, even if we find a cause… “what next?” Finding a cause is only half of it. TJ is only 33, and so he has at least 30 working years left ahead of him. He needs to be able to live his life and work (like he wants to) and therefore we should be looking into all options to make that possible.

Isn’t it wonderful to find such a caring doctor? Especially after years and years of being fobbed off. I mean, TJ has already changed careers twice and gone through multiple “probable diagnoses” before getting to this point. It’s about time we got a plan in place!

Talking of plans, that’s another thing the doctor did for us. He created a two-year plan of action. He talked us through how useless the pain medications that TJ is currently on are for neuropathic pain. They just aren’t effective for this kind of pain and so there is no point in him putting up with the side effects from them.

Unfortunately the two which are well known to be effective for his kind of nerve pain are the ones he has struggled so terribly with, and the target dosage for these is much, much higher than the dose he was on before. However, the doctor explained how ridiculous it was for him to have been started on the doses the GP gave him, because they need to be started on a much lower dose and given several weeks for your body to become accustomed to them before that dose is increased. To reach the target dosage of one of these medications will take roughly 6 months, to reach the target dose of both together will take around a year. That’s a pretty long process… but it is a process we can begin to take. And that is a massive relief.

In the space of maybe 15 to 20 minutes we went from feeling totally helpless (and hopeless) to having hope that one day TJ may well be able to live a much happier and healthier life again. He may be able to do more with Little Man and me, to go for walks in the woods, and to work a full-time job without making himself so ill he has to spend the weekend in bed recovering. He won’t be totally pain-free, but he will be able to live his life again, and that is the best news we have ever received.

Our Consultation with the Neurologist

You may remember that in November last year I wrote about us finally seeing a GP about TJ's sensory disturbances (And Now We Wait). He's been having pain and some sensory issues since 2008 but in the past 12-18 months they have progressed quite significantly and in October TJ went for nerve conduction tests and then we followed up with blood tests and a lot of waiting…

The GP finally agreed to refer TJ to see a neurologist in January and to speed up the process we decided to go private for the initial consultation. That was today. It feels like a long time coming.

We discussed all the symptoms TJ has been experiencing, all the pain (which keeps him awake at night and stops him from doing a lot of things he'd like to do) and all the sensory stuff (like not being able to tell if the washing is still damp when taking it out of the dryer). And we discussed the various medications he has tried in order to deal with these symptoms, the tests he has already had, our fears over what it might be and the affect all of this is having on TJ as an individual and us as a family. And the consultant took it all on board with complete sympathy and sincerity, which was very welcome.

He carried out a thorough physical exam and then sat us down for a chat – to say we were nervous is an understatement, but we were ready to get some answers. The problem was there are currently no answers and may never be any…

According to the neurologist, it may be that we never find a specific cause for TJ's symptoms. In fact his actual words were, "if I were a betting man I would wager that we'll never know exactly what is causing these symptoms". However, the consultant also put a very big emphasis on the fact that this does not negate the fact that TJ is suffering from some rather extensive symptoms and managing these is a priority.

He explained that TJ's symptoms do not suggest anything major such as MS, cancer, diabetes etc, which we would have expected to have progressed much further and faster than they have, and whilst that doesn't rule out things like MS completely it makes them highly unlikely. He also explained that a lot of the tests look at large fibres in the nerves, whereas a lot of people have issues with the small fibres which are rather more difficult to study and find a diagnosis for, and this may be where TJ's issue lies. Although apparently TJ's symptoms are rather more extensive than the typical small fibre neuropathies.

The consultant was very sympathetic in the fact that not being able to diagnose the problem can be frustrating, but explained it is still a good sign that it isn't anything major which would likely progress further and further as time goes on. This is hopefully as bad as it gets and our aim now is to work on finding the best way to manage the symptoms.

To be honest we had already considered this as a possibility. TJ used to work on a neuromedical ward and so has already self-eliminated a lot of the more typical conditions. He'd also eliminated some of the less common conditions, purely based on the symptoms he knew these would cause had he been suffering from them. But it is a relief to hear that from a specialist in the field. It is also a relief for TJ to hear a specialist qualify what he is going through, as all too often it is far too easy to question what you're experiencing and believe it may be "all in your head" even when you know that is not the case. 

So our next step is to go back to the GP and discuss the suggestions made by the neurologist with her. He mentioned that we could go down the route of CT scans and a lumbar puncture, but as these may not provide any further clues to a diagnosis we may decide we'd rather not go down that route. It is something to discuss with the GP. He also said that we can discuss the treatment options with the GP and start with the one that seems the "least undesirable" to us first (which worries me slightly as to what he is going to suggest, but we'll wait and see).

All in all we are both very pleased with the consultation. The neurologist was extremely sympathetic to what has been going on, how TJ has had to change careers twice because of this and how it is holding us back as a family as well as limiting TJ in what he can do. Hopefully we can find a treatment plan which works far better than the few suggestions offered by the GP so far and can move forward with less pain and more freedom.

But for now we have a little more waiting to do… 

And now we wait…

Today we had an appointment with the doctor. It was to discuss the sensory disturbances TJ has been experiencing over the past year or so, sensations which are getting worse (not better) and becoming more and more unbearable. They have come after many, many years of intense chronic pain, which has had a maasive impact on TJ's personal life and our life as a family.

To explain how big this has been for us, I need to backtrack to the beginning. So bear with me.

In 2008 TJ and I moved in together. He had already been suffering from painful arms and hands, which meant he was struggling to keep up with the physical demands of his plumbing work. Just a few weeks after we moved in together he lost his job. It was hard. We were living in Cambridge on my incredibly low income (childcare does not pay well!) and so the hunt was on for us both to find new jobs. I moved to the Tourist office, easing the pressure off us a little bit, and Tim eventually retrained in healthcare and took on a role which was far more supportive than physical. 

Things should have picked up, but I was going through my own health issues and in 2010 I quit my job due to discrimination over my health. We were back to a single income and had to relocate to survive – and the pressure fell solely on TJ to provide for us, all while he was in intense pain himself. It was tough!

Between the two of us, health issues have severely limited our financial stability. Changing careers has meant TJ has repeatedly had to take a pay cut to start at the bottom of the ladder. And I have been unable to work full-time hours since 2010 due to first my severe pregnancy sickness and then balancing work and childcare for Little Man. We've struggled more than we would care to admit, and the financial stress is just the tip of the iceberg when looking at the difficulties we've had to face together.

The worst, for me, has been seeing TJ suffer from depression due to a combination of the trauma from my pregnancy and the fact that being in pain every single day just wears you down. I've been in that place myself and I know it is an awful place to be. And the reality is I would rather be there myself than see someone I love so much fall into that hole. There is nothing I can do to stop the pain and that hurts me more than I can say…

In fact, seeing TJ in pain and struggling with even simple tasks just breaks my heart. I've dealt with pain before and know my own limits and how I cope with that. But seeing someone else in so much pain is a whole new experience for me and one I find incredibly hard to deal with. Am I supporting my husband enough? Am I giving him what he needs to get through this?

I feel like I failed in that last part quite spectacularly these past few months. I was so caught up in dealing with all the other things in our life (issues with childcare, financial worries and needing to find a new/second job etc) that I just didn't stop to wonder why certain things were happening. I'd get cross at TJ for always leaving bits of food on the plates he washed up or for putting clothes that were still damp into the wardrobe. It just seemed like he wasn't trying. But what was really happening was that he was struggling to actually feel what he was doing… and once he told me that it scared the hell out of me!

We were in the car one day and he suddenly blurted it out. "My hands feel numb… I have an intense itching in my arms, and pins and needles in my hands, and I can't quite feel the ends of my fingers". My mind went into overdrive thinking of all the things that could cause this, I can tell you. 

We went to see the doctor not long after that. We discussed the fact that over the past 5 years TJ has tried multiple painkillers, all to no effect, and that he'd had to change careers twice and was now struggling in day-to-day things and his symptoms had begun to progress from pain to sensory disturbances. At that point it was just his hands, and so he was referred to the hospital for nerve conduction tests. That appointment was 19th September (Little Man's birthday) and his nerve conduction test was on 16th October (the day after our 3rd wedding anniversary and my handover day for my new job). Let's just say there was a fair amount of emotional confusion on those days between both happiness and worry, relief and concern. It was pretty intense.

But it didn't stop there. The following week TJ's discomfort continued to increase and he admitted that he had similar sensations in his feet. That was when I really panicked. If it were just in his hands, maybe it could be something simple like Carpal Tunnel… but if it were in his feet as well, well then we could be looking at something far more serious. 

We saw a nurse practitioner that week out of desperation. She confirmed our fears – this could be neurological. She mentioned a wide range of things that could cause this kind of pain, none of them very reassuring. She advised us to make an appointment to see the doctor again. And so that is what we did…

Today we saw the doctor. She said TJ's symptoms do not follow any "textbook" examples, but then not many people's symptoms do to be fair. She's ordered extensive blood tests (tomorrow) – TJ has had blood tests done twice before but this time she will be checking for things which could affect the nerves. His nerve conduction test results have yet to come through, so she is chasing those. He sees her on 14th November for the results from both. At that point we decide whether he is referred to neurology or not.

And until then we wait. We wait very impatiently to find out what is causing so much pain and discomfort that TJ is struggling to do simple tasks like wash the dishes. We wait impatiently as the discomfort keeps him awake at night and gradually breaks down his barriers and his mood plummets. We wait impatiently until the 14th November when we still may not get any answers. And I won't even be there to go with him as I'll be at a conference. 

I'm not sure my heart can wait… my husband is hurting badly and there is nothing I can do.