dawnmist: My homebuilt gaming keyboard - version 1 (Default)

The new Rheumatologist was utterly unhelpful - ignored previous test results confirming Small Fibre Neuropathy, asked questions then wouldn't let me answer them, abused me for taking too many medications for the pain SFN was causing, then having ignored the abnormal SFN test results said that there was no evidence at all that there was anything actually wrong with me and therefore I should stop the treatment I was already on as she doubted it was doing anything for me anyway. She left me feeling like I had been treated as though she thought I was making everything up to get access to pain medication.

My existing Rheumy was appalled.

That leaves me with no treatment to slow/stabilise the rate of nerve damage...and my understanding is that any nerve damage that is more than about 2 months old is permanent. The wait for that appointment with its completely unhelpful outcome used up my 2 months grace that might have saved my ability to walk without needing crutches. So now I find myself having to accept that the state I am in now will be the best I can hope for going forward.

Read more... )
dawnmist: My homebuilt gaming keyboard - version 1 (Default)

I don't know if there is anyone following this other than my best friends, but if anyone else stumbles across these posts please know that you are welcome - and I hope you don't end up with the amount of trouble I'm experiencing.

I've been using crutches since early August, because the pain in my feet by the end of the day had reached severe migraine levels. It had reached the point that I couldn't really walk without aid anymore. I got a snazzy set of "SmartCrutch" crutches, which were adjustable in the angle of the arm section, so I could rotate them up to horizontal and put my weight through my forearm/elbow instead of through my hand. I also added a loop to both crutches so that I could lift the crutch with my arm instead of having to do it with my hands. The crutches have helped significantly - but they are a total nuisance when it comes to anything like shopping, carrying a drink, etc. In order to get my morning chai, I've had to get up a lot earlier for work in the morning, so that I could sit at the chai place to drink it...no more drinking it while walking to work. It's often a little too hot to drink right away, so I had to factor that time in too. But it was working ok for me.

It's also been useful on public transport. People can see that I need a seat, and have been very kind about helping me with things like lifts, doors, etc. Heavy doors that you need to open towards yourself are bloody difficult. The door at work is one of those...opening it to get out is no problem because I just have to lean against it. Opening it to enter is harder - it's almost knocked me off my feet a few times. I've learned to use the foot of my crutches to jam it in place so I can get in.

My Rheumatologist has referred me to another Rheumatologist at one of the major teaching hospitals here. His hope is that I can get access to the biological medication "Rituximab". It isn't approved for use with Sjogren's here, so he couldn't give it to me himself (too expensive without approval). The first appointment with the new Rheumatologist is on the 12th Sept. It will have been less than two months between when I saw my current Rheumy and when I finally get to see the new one - which is a remarkably short time. I was still walking without the crutches when I saw my current Rheumy...and I'm scared that by the time any immune-suppressant treatment is started it will be too little, too late.

I've been worrying that I'll be in a wheelchair by Christmas if nothing is done to stop it before then. My pain specialist has added an oral form of lidocaine ("Mexilitin") to everything else I've been using to try to get the foot pain under control. I'm still on a very low dose of that (titrating it up slowly), and have noticed no benefit or side effects from it at all yet. I'm finding it hard to wait for that September appointment.

Yesterday, I really needed a wheelchair.

I didn't have one, of course. But even with the crutches, getting up to go to the toilet was triggering migraine-level (7-8/10) pain in my feet. I caught a taxi to the station in the morning, because pain was already increasing significantly. When I got to the city, the two major blocks walk seemed endless - particularly the uphill part at the end. I couldn't detour to get chai - if I did, I would have been stuck there unable to walk any further. All day, people at work kindly made me cups of tea, refilled my water-bottle when it got empty, got me lunch from the local SpudBar, and did pretty much anything they could to help. I was ok when sitting quietly for a while, with my feet hooked back under the seat so that the lip of my sheepskin boots was caught on the ground and the weight of my feet/legs was hanging on the front of my feet instead of my soles/heels. Mind you, "ok" was still a 4/10 pain level. At the end of the day, I was leaving at the same time as someone else from work, and they hailed a taxi for me from the taxi rank around the corner from work so I could catch a taxi for those 2 blocks back to the station. Walking them was simply unthinkable.

It's all so variable. The day before, I almost didn't need the crutches at all. The day before that, pain was bad but not at migraine levels. I can only hope that yesterday was a flare that will settle back in a few days...but past history shows that this is a slim hope.

It leaves me wondering whether those few months I thought I had before needing a wheelchair will turn out to be only a few days? Will I have deteriorated far enough that I'll be in a wheelchair before I get to see the new Rheumatologist in September?

dawnmist: My homebuilt gaming keyboard - version 1 (Default)

A pox on this stuff!

For the last 1.5-2 months, I've been using the Lidocaine patches on my feet at night, because it would stop the broken-bone type ache in my heels caused by my heels touching the top of the mattress. But during the day, the pain in my feet had been getting so bad I was struggling to walk at all by the end of the work day. So last night/today I switched them over to using the patches on my feet during the day. I reasoned that I could go back to using my cushion under my calves at night, so losing the ability to walk was the more pressing problem to solve.

And it worked! I did get the beginning of a late-afternoon pain escalation, but it settled back down again. I was able to walk freely to the station, and still able to walk freely to the car at the other end. Yay!

Everything went well...until I went to bed. I will admit that it took an hour or so to build (mostly because I felt the bed was cold to begin with I think), but the cushion under my calves set my calves off (giving me a new description of burning to add to my list - being boiled in oil - it's hotter and "stickier/thicker" than just boiling water). Getting warm triggered off some scalding pain on chin, forehead, back of neck & back of the shoulders - pains I'd been trying not to "notice" or acknowledge for the last few weeks in the hope that they would go away or that I was imagining them. The pain is enough to make me headachy and nauseas.

So I've taken additional 50mg of Tramadol, in the hope that it can get things to settle down enough so that I can get some sleep tonight.

I have a phrase from the soundtrack of "Return to the Forbidden Planet" stuck revolving in my head right now - "I can't win either way!". lol


I woke up this morning with a potential solution to the problem. I usually cut the patches for my feet into 6 sections (3 per foot) - one each for under the ball of my foot, under the heel of my foot, and one wrapping around the back of the heel. What I really need during the day is the 2 pieces that go under the foot. What I need at night is the strip around the back of the heel. So instead of using all 3 pieces at once, I'll split my usage so that I use the strip around the heel at night and the other 2 pieces during the day. That way I should be able to avoid using the cushion that sent my calves nuts last night.

dawnmist: My homebuilt gaming keyboard - version 1 (Default)

Well...it's been an increasingly challenging few months since my last post. I'll apologize in advance for this post rambling around somewhat. I tend to use these to help work out how I feel about things that are complex issues in my life, and I feel like I'm facing another of those "oh crap, now what" chronic pain/disability issues - this time with mobility.

Assorted ramblings about mobility and pain... )
dawnmist: My homebuilt gaming keyboard - version 1 (Default)

Last time I posted it was immediately after the attempt at a Ketamine infusion. I did at least have lower pain for the 2 weeks following it - but not enough to drop out any medications. I saw my Pain Management specialist about 3 weeks later, and he decided to increase the Duloxetine to the normal theraputic dose of 60mg/day. He also suggested that some Lidocaine patches might be able to help, and gave me a prescription to get some to test.

Since then, pain has been mostly stable. I've been able to drive with the steering wheel merely causing discomfort - and not escalating over time as I drove. I've been able to do most normal activities without too many issues (apart from the "stand-up get-dizzies"). But I still haven't been able to use a computer mouse (I tried - it only took about 2 minutes for my palm to catch fire), and carrying things when shopping (like a couple of spools of thread!) also sets my palms burning and fingertips feeling mashed/bruised. I have to be careful holding my husband's hand when we're out - the outside of my index finger starts getting chilli-burned within a few seconds, so I've learned to pull my index finger out on top of his hand instead of clasping it around/in his hand. That finger seems to be ultra-sensitive to touch.

I did go and see a Neurologist. He was intrigued by the puzzle of what had been happening (and the huge bundle of documentation my Rheumy had sent him) and decided it was worthwhile to do a few new tests. In his opinion, the most common cause of neuropathy in women my age is due to MS, and as my cousin actually has MS he wanted to rule that out. He was also not sure that the neuropathy is being caused by Sjogren's - because (in his words) "the people with Sjogren's that I've seen previously had both large and small fibre nerve damage". Apparently there is one test available in Australia for testing for small fibre neuropathy - the Qualitative Sensory Test (QST), so he wanted me to go for that too.

When the Neurologist's test results came back, the MRIs absolutely proved that there was no demyelenation occurring - so I definitely do NOT have MS. The QST test came back with sensory anomalies - loss of temperature sense in the foot tested, and loss of vibrational sense in the hand tested. The results were consistent with a length-dependent small fibre neuropathy...and the Neurologist couldn't drop me fast enough after confirming that diagnosis, since there was absolutely nothing he could do to help me. He's passed me back to my Rheumy, with a suggestion for a few additional tests if they hadn't already been done to rule out there being some cause other than the Sjogren's for the SFN. I really do think it unlikely that they will find something else...I've tested as dead-centre of the normal range for glucose tolerance (absolutely not diabetic), I'm not coeliac (though I am severely wheat-intolerant...but rye and barley are fine), I don't drink, I don't have hepatitis, etc. That rules out most of the other potential causes...

When I saw my Pain Management Specialist at the end of Jan, he proposed trying to increase the Duloxetine to 90mg since the 60mg had stabilized things. To do that, I needed to drop my use of Tramadol - but he suspected that with the Duloxetine interfering with the Tramadol, Tramadol wouldn't be doing much anymore anyway. I initially tried to do it straight out...and 36hrs later had severe skin pain that felt like what had happened in the Ketamine infusion, just not quite as intense. I figured it was a withdrawal reaction, and went back to the previously stable doses. Then I talked with my GP about how to properly taper off the Tramadol so that I could try increasing the Duloxetine safely. As I tapered it off, I noticed a definite increase in pain, in a dose-related pattern. The final week while I stabilised on the lower dose before increasing the Duloxetine (so that I knew any bad reactions were due to Duloxetine and not to the lower doses of Tramadol), the pain was very noticeable...so I decided it was a good time to test the Lidocaine patches. They managed to make my hands feel like "normal" hands at the end of the day, so they most definitely DID help! They also cost $160 for 30 patches, and a single patch could only be used for 2-3 days. Still, it made it possible to get through the last couple of work days for that week.

Then I tried increasing the Duloxetine. With the initial increase (and much less strongly, the original dose) there was a noticeable effect within the first couple of days, and it increased in effectiveness over the first week. With the increase from 60mg to 90mg...there was no noticeable improvement, and in fact the pain in my hands deteriorated daily. When the touch-sensitivity of my hands reached the point that tying my hair back first thing in the morning caused 6/10 level pain - with mornings being normally the best time of the day for me! - I called the increase a failure and reverted back to the Tramadol + 60mg Duloxetine that had been working and holding stable (as had been discussed with my Pain Management specialist prior to making the trial).

I'm still holding relatively stable with the Lyrica + Tramadol + 60mg of Duloxetine, but there has been a minor increase in overall "reactivity" of my hands to random touch. I've had a few more days where I needed additional Tramadol to deal with break-through pain, and have used another lidocaine patch when things were getting nasty. I'm still stable...but not as good as I was prior to testing increasing the Duloxetine. My fear is that the severity is still slowly ticking up underneath the current medications, and that sometime soon they'll fail to be enough to keep it under control. I try not to dwell on that though...and focus on enjoying what I have while I still have it.

dawnmist: My homebuilt gaming keyboard - version 1 (Default)

I'm sitting here tonight trying to come to terms with the progressive loss of ability to use my hands. It doesn't seem like such a big thing...the only real issue is the misreporting of touch sensation, so that instead of feeling touch, I feel fire and abrasion. They work perfectly fine...it just becomes progressively more than I can bear to continue to use them.

General ramblings as I try to put my thoughts in order... )


dawnmist: My homebuilt gaming keyboard - version 1 (Default)

February 2017



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