Welcome to my Lyme Disease, Rheumatoid Disease & Arthritis Diary, something I never thought I would be writing! Scroll to the bottom to begin at the beginning of the sorry tale.
February After taking lorazepam once or twice a week I've started a herbal sleeping remedy based on hops and valerian & passionflower each night. So far sleep is better, getting to sleep fairly easily and then only waking once or twice during the night. Joint pain all but gone, just the normal grumbly foot.
10th January Back to being pain free despite a long day on the ski slopes yesterday and think this must be down to the lorezapam rather than the mtx so am going to drop back to 10mg per week next week, a week early. Will take the lorezapam as needed.
2nd January 2018 A reasonable night's sleep last night after 2 rubbish ones, but pain in left wrist and hand back again, the first time since early December.
December Continued taking lorazepam nightly until 23rd December as I wanted to drink over Christmas. Headaches largely gone in the morning and joints have remained pain free. Sleep very difficult when not taking the tablets so took one again 29th after 2 nights of almost zero sleep. Woke morning of the 30th after almost 9 hours unbroken sleep with a splitting headache and then went back to sleep for another 2 hours.
9th December A good sleep and no headache or confusion this morning. Joint pain is definitely reduced - lorazepam or mtx?
8th December Woke up again with a thumping headache and after a less good sleep. Confused and disorientated this morning, struggling to add up the shopping prices and kept tripping over things. Irritated most of the morning! Flu Vac at lunchtime.
7th December Woke up from a solid night of sleep with a thumping headache, but a second skiing day cleared this. No knee pain today, either.
6th December Visit to GP for pre flu vac check up and he recommended lorazepam for one month (1mg per night) to help with ongoing insomnia - stress can cause pain in the joints through tensing muscles and ligaments - and the insomnia is a symptom of this stress. Asked if I'm stressed - umm #Brexit?! However, the raised dose of mtx plus the lorazepam means no alcohol at all - right through Christmas and New Year, but it will be worth it to feel well again.
5th December Yesterday I took the second elevated dose of mtx and today have the familiar unpleasant metallic taste in my mouth. But yesterday was our first trip out on skis for the season, skiing from 10am until about 15.30 with a forty minute break. We stopped more to lack of fitness. My knees were excruciating for about the first two hours, but only when sat on the chair lift: when up and moving again the burning stopped.
24th November Rdv with the rheumatologist who has declared herself to be baffled. Despite having pain in multiple joints I have no inflammation or swelling to suggest that this has anything to do with RD which is alarming. Do I have something else wrong with me instead or as well? She thinks it may be stressed related.
The mtx dose is being raised by 2.5mg a week for two months and if at the end of this period the pain has gone then we conclude that is is RD despite the lack of inflammatory markers and I'll stay on that dose until I see her again in three months. If there is no change in the pain levels then I'll revert back to 10mg and further investigation will have to be done.
To counteract the pain I'm to take 500mg paracetamol three times a day for five days even if the pain goes after the first couple of days.
I am feeling quite depressed by this lack of progress especially as the start of the year was so positive.
23rd November Last 2 weeks - a couple of short walks (2hrs) without problems and a few days of gardening, managing about three hours at a time before wrists and hands and particularly knees become very painful, knees getting worse after I stop. Hands/fingers have been locking closed last few weeks, especially inn the mornings or when holding tight onto something small. This is painful, but more alarming. Stiffness in the mornings is noticeable now, but eases after about half an hour. Soles of feet hurt most mornings. Paracetamol (500mg) once a day, maybe three times a week for the last fortnight.
7th November Wrists, thumbs and ankles took about two weeks to recover from the walk, with a combination of sudden surging pain in the joints (wrists, elbows and between the two, knees and ankles and joint where first and little fingers join hand) regardless of being at rest or active, difficulty using hands, especially thumb on right hand and general stiffness in the mornings, easing after thirty minutes or so. Feet increasingly painful, especially when walking or standing eg cooking. Stiffness continues to date (colder weather?) as does sudden throbbing pain in elbows, ankles and hands. Feet back to continuous pain, especially where little toes joins foot and length of big toe, both sides. No insomnia since start November.
Little fatigue, and being active, even if painful improves mobility and mood! Taking paracetamol, usually 500mg once a day, two days out of three on average, usually at lunchtime if the pain hasn't eased or at night to aid sleeping.
16th October Five hour walk in the mountains - feet really painful after only an hour or so. 1g paracetamol stopped it getting any worse. Wrists and thumbs also very sore by the end - from using walking poles?
14 October Finally shaken off the deep burning pain which also effected my left ankle from time to time. Tried a shot motorcycle ride but was really stiff and the next day I could barely move. Loosened up enough for a three hour walk on 12th. Working hard on the garden but only managing about an hour at a time between rests.
4th October Really unpleasant deep-seated pain in my left elbow and wrist and effecting the whole of my forearm and sometimes spreading up to the shoulder. Was nagging yesterday with just ocasionnal bursts of pain but during the night it became pulsating and has continued into the morning. Very little sleep last night. 2x500mg paracetamol has not even taken the edge off.
September Busy month with a trip to the UK and a motorcycling week in the Alps marred by just one day of stomach cramps from the mtx. Insomnia is a constant companion, with maybe one or two nights of five or six hours of uninterrupted sleep per week. The rest of the time I get two hours here and there throughout the night, usually falling dead to the world just as the alarm goes off!
25th August Visit to consultant and she is much happier with me. No obvious swelling or inflammation in feet, wrists or hands and I have to accept that the pain will just be there in varying degrees.
Summer has largely gone well, although my consumption of paracetamol feels terrifying - probably three or four times a week, but rarely more than once a day. But that said I have been busy, getting a fair bit done in the garden and a few trips away.
19th June Jaw (R) painful to open mu mouth for the last week or so. Not enough for pain relief, or maybe I should anyway to avoid the pain memory effect.
29th May Eight hour hike in the mountains, two co-codamol at the end of the walk as my feet were screaming, but no long term effects on my feet.
26th May Foot pain has reduced just to the location where there is some joint damage on the toes, which is a relief. The test will be if it stays away. Trying to wear the insoles as much as possible and garden in lace up shoes rather than wellies or plastic crocs.
22nd May Pain in feet marginally worse despite the medication plus shoulders and jaw are grumpy.
16th May Consultants visit and a right telling off! I have to wear shoes with made to measure foot beds at all times (at a non-reinbursable €200 a go that just is not going to happen) and must take pain relief whenever there is pain, something I am reluctant to do. She thinks the pain is causing more pain so I need to stop just putting up with it! On a two week course of 500mg paracetamol three times a day and if the pain along the length of my foot does not go then I have to have an MRI of that foot.
14th April Largely back to normal, just tired and with more joints (shoulders. ankle (L) and knees) having a persistent background throb.
11th April First flare of the year - throbbing pain in feet, ankles, shoulders, wrists, elbows and jaw, but not continuous. Very fatigued. Not ideal in the middle of the spring gardening rush. Difficulty sleeping for a few days before the pain started - wonder if that was related. Taking paracetamol.
2017 January to March
The year has in general gone well or at least nothing has got significantly worse. The pain in my feet, especially the left now extends along the full length of the foot - tendonitis? Pain in my feet and also wrists is constant although rarely debilitating. Shoulders cracking and painful if lifted above head height and rotated. Periodic burning and sharp pains in all joints day and night with little relationship to use, exercise or rest.
Mid December 2016 Still no fatigue which is fantastic as that was so debilitating - I can take pain relief but no amount of caffeine could get me moving when the body was too exhausted! Pain in my left wrist which I now have accepted as likely to be always present, as is that in my feet. Ankle pain, again left, on and off during the month and often sharp enough to take the breath away. Intermittent pain in left elbow and shoulder continues, worse at night and I cannot sleep on my left side. All the left is effected - interesting. Pain in left foot which was limited to joint where big and little toes join the foot has now spread along the left edge as far as my heel. Constant, but does not get worse with walking, of which we have done quite a bit in the last month, or skiing - first day of the season on 3rd December, although not enough snow to want to go back for another day.
Start of November Switched the mtx dose to the evening with dinner which has made a massive difference - I often used to be groggy on a Monday, but now I guess that is happening while I sleep, or toss and turn in semblance of sleep. No fatigue.
October Pain and small amount of swelling in left wrist again (continuous and worse if I use it), plus intermittent pain in left elbow and shoulder. Stomach cramps on 10th, still sore 11th. (Gynae episode 17-20, twisted fibroid outside uterus).
Ankle pain again end of month. No fatigue this month.
September On-going pain in ankles, wrists, elbows, jaw and shoulders, but rarely all at the same time!! The intense pain in ankles in first week of the month gone by the end. Walked up a long steep path in the Cantal which was just too much for my knees which were excruciating coming back down.
August Several days of continuous pain in ankles (one or the other) especially bad at night. Pain in right jaw for several days making eating painful. Stomach cramps most weeks.
July Periods of intense burning pain in wrists, elbows, shoulders and ankles lasting a few minutes but painful enough to take the breath away. Stiffness in the mornings has become noticable this month, but only lasting fifteen to thirty minutes or so. Feet painful as always at the point where the little toe joins the foot, plus the big toe.
1st June Knuckle between second finger and hand red, swollen and painful. Hard to use the hand to grip.
13th May Better, but still painful feet and shoulders.
12th May Woke with lots of joint pain - shoulders, elbows, feet, ankles, wrists and jaw - and real feeling of fatigue and malaise.
10th May Stomach cramps on and off for the last week, bad enough to wake me at night.
29th April Rhumatologue appointment - progress is so good I can 'lead a normal life' again, just stop/rest when there is too much pain or fatigue. So great to not have to worry about resting and protecting the joints all the time.
13th April '16 Two largely good weeks with just the odd day put aside for rest and recovery. It is the busiest time of year in the garden, but I've been able to assist my partner with his garden maintenance business, wielding the large petrol strimmer (The Beast) for almost an hour. Insomnia for the last 5 nights.
29th March After a busy weekend gardening and motorbiking on Saturday and then working in the garden all day on Sunday, Monday sees a return to fatigue, malaise, stomach cramps and painful hands, knees, ankles, shoulders and jaw!
14th March Heavy fall skiing, landing on neck and shoulder. A fall I would have previously laughed off resulted in a sleepless night and a very stiff and sore neck, shoulder, elbow and wrist the next day. May just be old age, of course!
8th March Back on skis again. Hard work but fantastic fun. Stiff knees, shoulders, elbows, wrists next day and sore feet as ever.
24th February Back home and my joints are once again stiff and sore, especially wrists, elbows and shoulders. Probably due to transition from a lying by the pool in the heat of the sun to a cold unheated house after almost 23 hours of travelling.
February Ten fabulous days in South Africa, where despite lots of walking I was almost pain free - I put it down to the warmth and the dry climate, plus the end of the disease flare.
26th January Knees are poppy, stiff and swollen which is no great surprise. General all over pain in the joints today, but worth it after yesterday. But a whole day in the sun topping up the vit D!
25th January Skiing today. Spent some time with a friend who is learning so lots of snowplough (poor knees) and then went off and bounced down a bumpy black run (poor knees part two). Just general aches at the end of the day although I crashed out a 9 on the sofa and went to bed at 9.30!
22nd January Appointment with rheumatologist and ex-rays. A little more erosion on my toes but otherwise the x-rays give no more indication of why I have so much episodic pain than do the blood tests. Because my joints are still in good nick I have been given free rein to do anything I like - if the pain gets too much I am to take lamaline again (paracetamol, caffeine and opium) and I must stop if I get swelling in the joints and return to her if it doesn't go down quickly. Vitamin D levels a little low. Conclusion: I've just had my first bad flare of the disease after the initial start.
We have also explored the possibility of undertaking some allergy tests to see if there is any non-steroidal anti-inflam that I can safely take. We will have to pay for this.
Meanwhile, my shoulders, wrists and feet (as always) are sore today.
11th January Blood tests back - all within band. Good but frustrating. Pain in wrists and feet, plus left ankle which feels stiff and rigid. Depressed.
8th January Difficult appointment with rheumatologist. She is concerned by the continuing pain issues especially because the blood tests show no inflammation. I must take 500mg paracetamol 3 times a day for the next ten days to see if that is enough to eliminate the pain. More blood tests, looking at deficiencies and other possible infections. X-rays of feet, wrists and hands at next appointment in 2 weeks. Ultrasound today showed small cysts on both wrists but not enough to explain the pain.
5th January Much better, wrist still sore but usable again. Energised!!
2-4th January 2016 Very painful left hand, wrist, elbow and shoulder - impossible to lift or hold anything; also left ankle and both knees grumbly. Insomnia.
31st December Blood tests, largely good although TGO & TGP are both at the top of normal band so will need watching - if I recall correctly they are indicators of liver health and mtx is bad for the liver.
8th December Just general first day of the season aches this morning, and no obvious pain in other joints after the exertions.
7th December First day on the ski slopes, after a trial run to make sure I could get my boots on. We headed for the first lift at 10am had a 45min lunch break and finished just before 4pm. All seems to be working well, although both ankles hurt most of the time, as did my feet and knees by the end.
16th November Couldn't last - two days of intense pain in my left wrist, total loss of flexibility and the appearance strange bony lump appeared. Pain largely gone but the stiffness and lump remains. Curious. Fatigue at the same time.
8th November No pain today for the first time in months and months. I've got so used to the background grumble in my shoulders and feet that it took a few minutes to realise that it wasn't there! Day out on the motorcycle which often brings out pain in hands and wrists has had no ill effects.
26th October - ankles, wrists and elbows have been bad for the last week making sleep difficult. On top of insomnia all month.
11th October Excruciating pain in both thumbs, especially the left, when I try and grip anything. Interestingly, this is the top joint rather than where the thumb joins the hand as usual.
1st October onwards Bad insomnia since late September, and only getting 3-4 hours per night. Also night sweats started which also adds to a disrupted night. In terms of functioning I'm getting a good rhythm of one day off one day on in terms of labouring in the garden.
26th September Consultant's appointment. Most of the swelling and pain has gone from the ankle and the rheumatologist did not comment on it! In general, all good and she may reduce the mtx dose in January at the next visit.
19th September Turned my ankle walking, ironically having done the scrambling up and down, this was while walking on the flat. Very swollen and painful by the end of the day.
18th September Three monthly blood tests; all good.
August In general a good month, although the days of fatigue seem to be on the increase. I'm getting much more done and just learning to live with continuous pain in my feet and shoulders, and often in my hands too. Digestive issues are common with mtx and for me this manifests as an upset stomach on the day of the dose followed by a total stop in all functions for a couple of days and then back to normal in time for the next one! Sometimes it is more severe than others.
26th July The fatigue has gone despite a restless night and although there is still plenty of pain I'm happy to get on with doing things, and more importantly am able to do so. Feeling happy again.
25th July After a month of feeling well and close normal, this morning I woke late and with a deep grinding pain in my feet, toes, ankles, hands and elbows. It took the best part of half an hour to get up and spent the rest of the day with shattering fatigue, unable to do little more than stare into space or doze for most of the day. The pain reduced but was replaced with sudden stabbing pains in any or all joints. like hot wire. This is the worst I've felt for months.
26th June Three month check up with rheumatolgist - she is very happy with progress especially the blood test results showing almost no inflammation at all. My symptoms of fatigue, insomnia etc are just down to the mtx or picking up viruses thanks to reduced efficiency of the immune system. Next check up in three months and medication staying the same.
17th June The last three weeks can be summed up in terms of bouts of fatigue and insomnia, plus too much pain in my hands, especially the right one to do more than an hour in the garden at a time. Definitely not improving at the moment, although I hesitate to say getting worse again. Maybe this is how it will be from here on in.
25th May Pain in left ankle for the first time, and general malaise this week.
12th May Pain in neck for the first time - maybe due to lots of planting and therefore bending from the neck in the garden. Insomnia continues, but interestingly levels of fatigue (as opposed to just feeling tired through lack of sleep) don't seem to be related to sleep. More likely to feel fatigued and have stomach cramps on Wednesday/Thursday/Friday (mtx day is Monday).
April Round-up A month dominated by insomnia and fatigue, with pain in both shoulders (left worse) both feet, inside and outer edge and elbows from time to time.
4th April Still lack of sleep and much background pain, plus sharp pains in left big toe.
30th March Serious fatigue and insomnia this week, plus pain in hands, feet and shoulders. First painkillers for ages, paracetamol at night. Stiff in the mornings. I've done a lot in the garden so it may be self inflicted. Skied yesterday, pain free again, but it was a short day due to the poor (spring) conditions.
27th March Rheumatology appointment. Thumb issues are part of the progression of the disease (as I assumed) and are only likely to get worse with time. Otherwise all good - back in three months.
24th March Skiing again - no knee pain for the first time.
20th March Blood works - slight indication of inflammation, otherwise OK.
10th March Knees very sore in the morning but by lunchtime almost all the pain had gone, I guess because I'm getting fitter and stronger.
9th March Thumbs back to normal after a painful and clumsy week! A good day skiing today including a couple of bump runs. Knees excruciating by the end - sharp pain at the front of the knee below the patella on bending. This has happened every time I've done more than cruisey blues and has taken a few days to recover.
7th March Lots done in the garden including pushing barrow loads of compost up and down the hill; I could not have done this a couple of months ago. Woohoo!
1st March Both thumbs have joined the party; now I understand the evolutionary importance of opposing thumbs. It has been almost impossible to pick up a pint glass.
26th February The foot beds seems to be working well and happily survived a ten day trip around Cuba. Walking on cobbles was a pain and we seemed to spend the first day visiting places at the top of long flights of steps. Knees were pretty sore the next day, but not enough to take pain killers.
I was worried about being cramped on the flight (nine hours, although closer to seven on the way back!) but all seemed fine. First time swimming also left my knees grumbling. But it was worth it!
And I have a cold! Hardly unexpected after being in close proximity to people for such a long time on top of immunosuppressant drugs. But I have read lots of reports of Lyme sufferers not getting colds so another hint that I may be clear of that disease and it was simply the trigger for an under-lying auto-immune condition. We'll probably never know.
23rd January Visit to the podologue to get a set of thermal foot beds made. I've been told to stop wearing high heeled or pointy shoes. Good job I don't wear them, then!
17th January Reading that both mtx and RA reduce life expectancy by a decade. Bugger. Best get out and do stuff, then!
9th January Flu jab. Nice to be able to walk into the Cabinet like a normal person, unlike my twice daily visits last January!
3rd January 2015 Started taking 1g paracetamol three times a day for six days in preparation for flu jab. Three weeks after that I will have a vaccination against streptococcus pneumonia, both to stop me getting pneumonia as that would mean stopping the methotrexate.
First motorbike ride of the year.
30th December Visit to the consultant - very happy with progress and we talked long term. In 9-12 months, assuming I've had no flares, she'll reduce the dose of methotrexate to 5 or 7.5mg per week but then I have to accept that that is where it will probably be for life. She feels that if we stop the drug, I may be fine for as much as a couple of years but then will be bad again with all the risks to the joints. As I'm having no ill effects so far from the treatment, this makes sense.
I've read a lot more about alcohol and the mtx, the US advice suggests almost stopping, but have had no advice here. As she explained the drug can compromise the liver and kidneys as can alcohol, so the two in combination can be a bad thing. But she is also pragmatic and if a nice glass of wine with a meal is important for my general well being then so be it. I have also read about hangovers being worse when taking the drug so have decided to move the mtx day to a Monday. I'm dry Monday to Thursday and will have a couple of glasses on the weekend only, so this makes sense. As I don't work it doesn't matter if the fatigue hits on a Monday or a Tuesday.
Nothing to be done about the fatigue, so long as it is manageable.
29th December No Insomnia or pain for a good week now.
19th December A Red Letter Day! Two and a bit hours on skis this afternoon. Very sore knees and knackered by the end but it was good, despite the ice! Nothing flamboyant, but it would seem the few remaining muscles still know what to do. No ill effects the next day either.
Bad insomnia for about a month - I'll wake up after an hour or so and that is often it for the night. Getting very tired.
10th December Very up and down couple of weeks with severe fatigue after taking the mtx each week - sometimes Saturday but more normally late Sunday/early Monday. Walking and exercising more, with more pain in the knee (L) but also more stability and strength. Shoulder pain (both) is constant and does cause problems at night, but not enough to take anything. I have decided to cut back on alcohol as USDA advice is 2 glasses per week, although the French Drs have not suggested anything. So Monday nothing, Tues, Weds, Thurs one glass, Fri, Sat, Sun two glasses.
28th November Last dose of prednisone today. Shoulders and feet more painful. Difficulty sleeping all night. Overall in more pain at the moment, but also feeling fitter and stronger. Clearly going to have to try and balance strength Vs pain (and the risk of joint damage).
Apparently 30% of RA sufferers are sero-negative, which is some comfort. Still waiting for a response from RAM, but I have bought a new skiing helmet in anticipation of getting out there this season!
8th November Down to 1mg a day of steroid for the last two weeks. Good cycle ride today - much, much stronger. But pain in left shoulder now, especially at night.
4th November Back to the GP and the forms are off to RAM to see if I classify as ALD once again.
31st October Appointment and x-rays with consultant. So I do have Rheumatoid Arthritis but am seronegative for the rheumatoid factor. Confused. The x-rays have shown some damage in my right foot and right shoulder, unsurprising as they are the most painful bits at the moment. She has prescribed foot beds to help my foot and physio in the future for the shoulder. Meanwhile I have 3 more weeks of prednisone and the mtx remains at 10mg per week.
6th October Visit to my GP to discuss if I do in fact have a maladie longue duree as there is some doubt. And yes, although I have the same treatment/symptoms as for RA I'm not classifies ALD because the cause of the arthritis itself is unknown. Only if I become disabled by the disease will this become the case. I have mixed feelings - ultimately the condition will cost us in terms of buying top up insurance, but there is also the hope that it may just go away, which would not be the case with RA. I have a what, but still lack the why! GP seems pleased with my progress, too.
29th September Monday fatigue is still there but much better. Now down to 4mg steroid per day. Shoulders ache mildly all the time and jaw at the end of the day.
8th September I feel much more awake than usual for a Monday, often the day the fatigue hits, so taking the folic acid on Thursday may have done the trick. However in general I feel more achy and sore than in recent weeks, so either the steroid dose is coming down too fast (currently on 6mg) or the methotrexate dose is now too low.
29th August. Visit to rheumatologist and bone density scan. Scan is fine and she is so happy with progress that the cortancyl (steroid) is being dropped a milligramme a fortnight, rather than every three weeks and she has also dropped the methotrexate to 10mg per week. I am getting fitter and stronger with each day, although still feel exhausted one or two days after the mtx dose so we are going to try taking the folic acid supplement two days before the mtx rather than two days after.
25th August Little change from last month - although I'm now celebrating (!) one year since the first exploding knee kicked this thing, painfully off! Now on 7mg of steroids and still 12.5mg methotrexate. A mild but continuous pain in both shoulders and right hand side of the jaw. Not bad enough to take painkillers, just an annoying niggle. More cycling, more walking and a few trips out on the motorbike. The road to anything remotely like normal fitness is so slow.
27th July Second cycle ride. Worse than the first and took over half an hour for my breathing to recover. pathetic.
25th July Down to 8mg steroids for the next three weeks. Generally feeling better - went for a cycle ride for the first time. Decided to opt for the uphill route as it meant a downhill cruise home and managed less than a Km - burning lungs and shaking legs. Four months to ski season which at the moment seems impossible.
20th July Finally took some paracetamol last night to try and get some sleep and awoke this morning with the cramps mostly gone, just a dull ache remaining. But the joint pain in my shoulder is back - can my body now only cope with one source of pain at a time?
16th-19th July Terrible stomach cramps and a raging hunger! But no joint pain at all. How odd.
4th July Appointment with rheumatologist. All good - keep reducing the prednisone by 1mg every three weeks. Next appointment and a bone density scan at the end of August. I'm not to worry about the persistent ache and may just have to live with it. I will be taking the methotrexate for at least another 18 months and then there is the possibility of reducing it to see if the illness has gone away.
26th June Prednisone reduced to 9mg today. Shoulders and jaw still persistently aching and horrible mood swings this weekend. Clearly methotrexate and pmt do not mix! .
27th June Another set of general bloods, all within band and only the C Reactive protein is slightly up on last month.
16th June loads of joint pain after the walk - jaw, shoulders, fingers, wrists - but not knees or ankles!
15th June Second walk, same time and distance as before but quite a bit of scrambling and all joints were sore by the end and next day.
11th June Went for a walk, about two and a half hours and probably only four miles. Sore knees by the time we got home.
6th June Rheumatologist is happy with the blood results and has lowered the steroids again - 10mg for three weeks then 9mg for three weeks. I should be off them in NINE months time!! Hopefully sooner.
I have been given permission to cycle but must turn back as soon as it hurts. The current pain in my joints is because the treatment is masking the illness. I must be more patient and wait for the joints to settle down before pushing it. Jaw pain is common, so no cause for concern.
Next visit July 4th.
31st May More blood tests - all within band and little changed to 30th April. New test for potassium levels show the levels to be low - at the very bottom of band so I will see what the rheumatologist thinks about this next week. Meanwhile I'll be eating a banana everyday.
No pain in knees now, unless I try to crouch too low. Shoulders still crunchy and sore at night.
26th May Over the last ten days I've had niggling pain in my jaw (both sides) and left hand where the little finger joins the hand. Both shoulders also sore. Not enough to take pain killers but definitely a step backwards. Knees and shoulders still click and grate!!
At the back of my mind is still the nagging doubt that the Lyme bacteria are still present and the current drug regime is simply masking the infection.
16th May First ride on my motorcycle since July 2013. We went out for about an hour - all twisty roads around here in the foothills - and my right elbow and shoulder really ached by the end of it. But what a feeling!!
Knees still painful going down hill but less so and I'm able to bend down much lower with each passing day.
6th May Update with rheumatologist. Reducing prednisone to 12.5mg per day and upping the weekly methotrexate to 12.5mg Next blood test in time for seeing consultant again on 6th June.
30th April Blood tests back and at last everything is within band, the first time since mid December, so hopefully there are going to be no side effects of the methotrexate, if I'm going to be on it for life. Right shoulder still painfully catchy, clicky and crunching.
28th April Week three and nothing to report. The metho leaves me feeling a little fatigued 24 to 36 hours after the dose but otherwise no change.
Bloods were taken on 23rd April to check all was OK, but the results have as yet not been emailed to me (If I wanted to pick them up they would have been ready that night!!) but I assume no message from the rheumatologist means all is well.
Shoulder still painful with movement and knees hurt going down hill.
19th April Week two on methotrexate. Pain has finally gone from shoulder unless I move too much, in which cast it is now more of a catching/clicking discomfort. And quite loud!! No obvious side effects at the moment. Trying to garden as much as possible and rest when the body says so.
11th April Yes - finally able to start the arthritis treatment - 4 X 2,5mg methotrexate once a week with a folic acid supplement, also once a week. I have blood tests in two and four weeks time and return to the consultant in a month. The aim is the bring down the steroid dose over time. The methotrexate will probably have to be jiggled up and down until we get the level right. I may be on it for life.
So what caused it? Who knows, not the medics who have tested me exhaustively. The rheumatologist has seen inflammatory arthritis brought on by stress, so it really could be anything. Maybe even the Lyme?
But I am feeling better, and definitely more mobile. But I must not over do it!!
Formal diagnosis is polyarthrite inclassée. I still have the dermatologist to see as psoriasis is still a possibility.
3rd April appointment with the lung specialist this morning and everything is normal, thank goodness. Seeing the rheumatologist again next week to hopefully start the methotrexate. I now officially have polyarthrite which mean I have a maladie longue duree and will get 100% of my treatment paid for via the Carte Vitale.
Have pottered in the garden this week whilst trying to put no force through my knees and shoulders which is rather difficult!!
27th March Appointment with the rheumatologist in theory to start three months of methotrexate to control the inflammatory arthritis, however she is concerned by the lung x-ray and wishes me to see a specialist as the drug can have an impact on the lungs. Booked in for next Thursday, 3rd April.
She also wants me to see a dermatologist as there is pitting on one fingernail - maybe psoriasis. No appointment yet but the treatment for psoriatic arthritis is also methotrexate so this is more diagnostic.
We had a discussion about Lyme and she is certain it is clear, but will give me another dose of abx (3 weeks) if I wish. But after consultation with colleagues she says the only Lyme symptom I have is the arthritis and it is almost never seen with fluid in the joints which I have. Ho hum.
More instructions to rest!
Terrible migraine in the evening, the first one for at least a year so took a single migraleve despite the paracetamol content.
19th March Blood tests back - all negative for various heps and HIV. Infection and inflammation rates are down, although still above normal. Only R shoulder is still painful despite total rest. I'd rather be gardening... No Lamaline since 16th. Liver function on the mend.
16th March After six days on the prednisone (20mg day one then 15mg per day) my knee, wrists and elbows are much less painful, but the right shoulder is as bad if not worse than ever, so still taking the Lamaline. Trying to slide one of the doors closed yesterday resulted in an almighty crack in the shoulder, pins and needles and numbness all down the arm and from then on the throbbing pain in the centre of the joint. What fun.
Lung x-ray showed some thickening of the lining of the lungs (Infection?) and first stage osteoarthritis in my spine which is just taking the piss!
11th March Late yesterday afternoon the consultant rang, despite being on holiday and called me in today. She has had much discussion with her colleagues and is coming to the conclusion that the Lyme may not be responsible for the arthritis (polyarthrite) but cannot as yet find a reason. Her reasoning re the Lyme was that the abx saw no improvement, and the bloods suggest the Lyme infection is an old one.
She has started me on a low dose of cortisone (prednisone) once again, 15mg per day and I have to stop the high dose paracetamol as it is impacting on my liver. She has upped the Lamaline (opium), but the cortisone should take away the need for pain killers, anyway.
In two weeks I am to begin an anti-arthritis drug regime for three months and should slowly come off the cortisone once that has started. Tomorrow I have more bloods to check liver and also test for HIV and hepatitis B, C & E. She thinks there may be a virus involved. I'm also to have a lung x-ray as a before shot as the new drug regime may impact on the lungs.
And have been told to reduce my salt and sugar intake, which given our healthy frugal life might be a touch difficult!!
I have also been told to rest and not do anything that might damage the joints, like digging, skiing, running. I can do gentle walking and will try to get the go ahead to cycle.
10th March Still no news from the consultant so chased her up this afternoon to discover that she has just gone on holiday for a week. It would have been nice to have some kind of progress report beforehand as at the appointment on 28th Feb it was decided that the point of potentially going into hospital was to speed things up...
Settled into lamaline in the morning and paracetamol at night, although nights still very difficult with too much pain for more than a few hours sleep.
Am trying to garden as much as possible as there s a huge amount to do, but cannot do more than an hour of heavy stuff over the course of a day.
2nd March I stopped taking the lamaline yesterday as the pain relief side seemed less good than the codeine plus I was getting bloating and pains in my stomach, which may of course not be related.
28th February Forgot to ask any of the questions plus the blood test results were not ready so very frustrating all round at the consultant yesterday. X-rays taken of hands, feet and pelvis and, along with those of shoulders and knee done last week were looked at closely and the rheumatologist is certain that despite the pain there is no damage to the joints. She also confirmed no neurological abnormalities, ruling out MS.
She will discuss with a colleague in Toulouse and the next stage is either three weeks of abx injections or being admitted into the Uni hospital in Toulouse for even more tests!
Meanwhile, I'm trying Lamaline for pain relief which has opium powder with paracetamol. So far it seems less effective and I wouldn't have been exercising anyway.
26th February. Questions for the consultant tomorrow - can I/should I exercise? And if so to what point in pain? I am very, very unfit with lots of muscle loss and wish to get strong again, not that I feel better in myself.
I am sleeping/working/walking in knee and elbow supports - is this sensible?
Should I take food supplements in addition to the omega 3 I'm currently taking?
What about herbal anti-inflams as NSAIDs are out - turmeric, garlic?
24th February Off the codeine for a week so my digestive system is finally working normally, the first time since late October. What a relief!!
Pain in shoulder still gets worse, especially at night and first thing in the morning, and has got worse in elbows and R wrist. Knee is improving, hurrah, and I can kind of walk again. I've managed a few hours in the garden this week, despite the pain (or maybe that is why it is worse) and even managed to turn over most of one veg bed. Only 9 more to go...
19th February Rheumatologist has just telephoned to say she has changed her mind about the abx. I am gutted as my symptoms are exactly the same as before the first course of abx so I'm more than a little worried that any remaining bacterial infection is now going to be left to spread. Next visit 27th Feb.
17th February Visit to rhueumatologist who is concerned as my symptoms are not normal for post Lyme and she thinks here may be something underlying that has been triggered or exacerbated by the Lyme. She has called for yet more blood tests and x-rays of all the few normal bits - pelvis, hands and feet. Meanwhile she wants another course of antibiotics to clear up any residual Lyme bacteria.
12th February Blood tests back - no test for Lyme (will be a false result because of the abx) but elevated immune response and inflammation indicators. Negative for rheumatoid arthritis. X-rays today - minimal joint damage, but a little bone de-mineralisation. Still a lot of pain in right shoulder.
7th February Back to the GP today, and for the first time it has taken a couple of days to get an appointment, previously I have always seen him on the day. He thinks the Lyme is gone but has called for further blood tests to confirm and also to investigate why my joints are again inflamed. Knees and shoulders are being x-rayed and I have an appointment with a rheumatologist in ten days. Not sleeping - a combination of pain and worry.
4th February Unable to get ski boots on yesterday for a first trip out today, mentally a very low point. No ankle bend (R) and no push/twist from either knee. Increased pain in R & L shoulders. Will arrange new Dr appt. 1 co-codamol in the morning.
3rd February Bad night. Took one co-codamol (500/30) in the morning and two paracetamol at bed time.
30th January. Quite a lot of pain in the right shoulder again, left knee swelling has reduced with strapping and rest. Taking paracetamol only for the pain - just 2 in 24hrs yesterday, so hardly debilitating pain. I want to give my body a little time to settle back to 'normal' before returning (or not) to the Dr to seek further treatment.
28th January. First day without steroids. Knee is considerably more swollen and shoulder more painful than for a week. Not looking good for the 'cure'.
27th January Last day (hopefully) of drug taking. Walked down the garden stairs 22 times yesterday and ran up 12 times. Left knee a bit swollen this morning but feels over worked as there is not the pain associated with the Lyme swelling. Right shoulder still sore. Planning on giving the joints two weeks of gentle exercise before deciding if I need a referral for possible damage to the joints. L knee and R shoulder both concern me.
24th January day one of 10mg. Able to walk up and down steps for about ten minutes, down painful; shoulder still has a continuous residual ache. Today is two weeks since completing the antibiotics so is when I would expect to start getting symptoms once more if the Lyme bacteria (b. bavariensis) has not been completely killed off.
21st January day two of 20mg. Good night's sleep last night, almost normal. Still some pain in right shoulder.
18th January. 40mg Prednisone. Awful night last night - almost no sleep and no coherent thoughts, either. I'd hoped a couple of hours in the garden should have tired me out, but obviously not.
17th January. Second day on 40mg. Very sore legs and shoulder this morning after over-doing it in the garden yesterday and Wednesday. Nice to be able to over-do it! Sleeping a little better last night.
15th Last day on 50mg. Sleeping is still difficult but I no longer walk like an old person, well, downhill is less good. Overall feeling well and less foggy.
14th Another sleepless night but again less overall pain. When there is pain caused by careless movement it is very bad. R shoulder and L elbow. More tired but generally feeling better.
13th and day two steroids. Bad nights sleep, less pain but a brain that both wouldn't go to sleep and wouldn't put any coherent thoughts together. Less general pain right shoulder, and more movement, but movement into the wrong place is more painful than before. General feeling of malaise today.
12th January began steroid course to tackle inflammation in joints. 9am took 2.5 tablets prednisone (50mg). 13.00 dizziness/light-headedness and trembling in hands
9th January completed antibiotic course. Pain R shoulder slightly improved.
Early January (ten days in) pain gone from all joints except R shoulder which is much worse and has been joined by both elbows, R mild pain, L moderate. L knee and R ankle still swollen, but reduced.
27th began injections
24th December GP appointment, issued prescription for antibiotics Ceftriaxone, 1g given by injection twice daily for a fortnight.
23rd December bloods back from lab, positive Lyme (Western Blot) for an old infection (3 months plus)
16th December saw GP, we both thought I had rheumatoid arthritis and the Dr called for blood tests to confirm, plus x-rays of R ankle and shoulder and L knee. Ordered Lyme test to rule it out.
First Week December 2013 Right ankle and right shoulder become inflamed and very painful. I'm unable to spend more than a few minutes without elevating the ankle.
17th October, right knee subsiding, but awoke with left knee swollen, inflamed and very painful. Assumed patella subluxation.
Late August 2013 Woke up with a swollen but pain-free right knee, assumed to be an extreme case of patella subluxation, a regular event.
Spring and early summer 2013 cold and wet and continually removing ticks from the cats. None seen on us.
April 2013 Last day of ski season - swollen and sore R ankle, assumed twisted in a fall - it was a powder day and there were many falls!
May 2011 Came off motorbike and hurt right shoulder. Occasional intermittent soreness at night from then on.
2000 Tested for rheumatoid arthritis as I had sore fingers with swollen joints and nodules. Results were negative and a daily dose of ibuprofen resolved the issue, although I became seriously allergic (anaphylaxis) to that drug family.