My bizarre body

I haven’t posted in a while, I actually don’t think I’ve blogged since my last Rheumatology appointment in July… Sorry about that.

So what’s been happening? Well I think I am starting to flare but I am not 100% sure because it is early days. I woke up on Thursday far more fatigued that I usually am, it was an effort just getting out of bed… In fact it was an effort just having the energy to lift my arm! I am well acquainted with fatigue but this is one of the first times it has affected me so severely. I woke up feeling like I hadn’t slept in a week yet my SleepCycle app showed that I had slept the best I had in days.  

 
Earlier in the week I had started running again. I didn’t do much (6x 1 min running each followed by 90 seconds walking) but it really took it out of me. My costochondritis wouldn’t let me run for any longer than 1 minute without making me want to be physically sick… So I stopped running. My knees were also aching after the run and on examination I had found that they had both become puffy.  

 Although they weren’t pink/red they were warm to touch and so I iced them and put Voltarol (topical NSAID) on them but I saw very little improvement. They haven’t really gone down all that much since.

Yesterday the distal interphalangeal joint (aka the joint at the top of the toe) of my fourth toe also joined in the fun and decided to swell. I actually couldn’t decide if my toe did look swollen or not because I haven’t really examined my toes before so I recruited some of my expert friends who confirmed that my toe was in deed swollen. [I would post a picture but my nails are in desperate need of painting and I don’t really want to inflict that image upon everyone đŸ˜…]. My friend Elizabeth from The Girl With Arthritis suggested that my toe looked suspiciously similar to those of people with Psoriatic Arthritis, a condition that has been brought up as a diagnosis for me. Here is a link to a picture that looks very similar to what my toe looks like. [Note – the picture is about half way down the page, but the page is a good read to learn about PsA].

Apart from my knees and my toe my thumb and PIP (middle joint) on my index finger have been swollen on and off… This isn’t unusual but if you add in my other joints and the fatigue (and of course the increased stiffness and pain) it’s starting to look like a flare. And on top of all that I have a low grade fever which isn’t unusual to have during a flare, but this is the very first time I have noticed it. My temperature was 99.4 degrees Fahrenheit earlier and I haven’t checked it again but I feel much the same so I would assume that I still have a low grade temperature. 

As you can probably tell from what I have written, I am not feeling on top form but I am actually doing a whole lot better than I usually am during a flare so I am grateful for that. I have also been researching supplements that are supposed to be helpful in treating the symptoms of autoimmune diseases so I am going to bring these up with my GP next time I see him… I am not a great believer in holistic medicines but I am more than happy to give them a go as long as my GP/a qualified medical professions familiar with my case/symptoms/condition/me clears me to take them.

 Surprisingly despite this flare my ankle is feeling amazing… This is the same ankle that I have been having trouble with for years but for the last 2 weeks or so it hasn’t swelled up once! I also have very minimal pain from it although stiffness is still a problem. My body is bizarre and I don’t understand it but I am totally on board with my joints feeling better so I am not going to question it! I’m just extremely grateful that I don’t have to deal with a flaring ankle on top of all the other joints and the low grade fever! 

Time for a new Rheumatologist

A while back someone posted on one of the support groups I am a member of asked for people to take pictures of themselves holding a sign with a message they would like to give doctors so that they know how we feel. My sign had a message which said that just because my problem may seem small to you [i.e. the doctors], doesn’t mean it is small for me. When I wrote that I was thinking about my experience with my rheumatologist. She sees people who are really really sick and she also sees me. I am not that sick at all. My condition is not life threatening nor has it caused huge problems for me in the past. But the problems it does cause me feel like a big deal to me and when doctors do not take these things seriously it feels like you are being ignored. It feels like the problems you’ve come to them for are invalidated.

As a future medical professional myself I never compare people’s conditions. Just because one patient is sicker than another doesn’t mean that they can be made to feel that their condition isn’t a big deal. I also try to put myself in the patient’s position and think to myself, “if I was this patient, with this problem, what might I be feeling?” and based on that I try my best to treat them accordingly.

Yesterday I had my 3rd review since starting Plaquenil/Hydroxychloroquine in November 2014. I expected my rheumatologist to be engaged, to ask questions and to do a physical exam but instead I found her to be disinterested, unwilling to ask questions and unable and/or unwilling to answer my questions. The only examination that she did was on my ankles as these have been causing the most problems. I explained that my wrists were sore. Her response was to say “okay”, she didn’t look at my wrists or ask any more about them. I asked her about my hair falling out and all she could tell me was that it might be my autoimmune condition but she didn’t look at my hair. I came out of that appointment feeling totally invalidated, she knows I have pain and she doesn’t doubt that but by not examining me and not letting me know what she is thinking she makes me feel as if she doesn’t care.

I felt as if I couldn’t tell her everything that was going on because she didn’t care. I felt as if I was bugging her more than being her patient so I didn’t ask about things I was intending to ask about which was daft because I had waited four months for this appointment but when you are facing someone who you feel doesn’t care what you are saying or seems completely uninterested, it is hard to go into the things that you want to discuss. It’s easier to just leave them.

This appointment has had a few outcomes:

  1. My ANA is now negative where it was positive before… but we don’t know what this means or what has caused it [although I believe it was the Hydroxychloroquine]
  2. The MRI of my ankle came back clear but it is going to get reviewed by a specialist to double check, and if it is clear I will get referred to physiotherapy [which is what I requested]
  3. My Rheumatologist didn’t say anything about the Hydroxychloroquine so I am going to continue it at 400mg as I was prescribed until someone tells me otherwise
  4. I can try OTC topical NSAID gel to see if that helps on top of the Naproxen and paracetamol – I have since bought Voltarol
  5. I need to get a new Rheumatologist – as suggested by many, many people throughout social media

It has been a day since my appointment and I still feel quite upset about all of this. I have been with this rheumatologist since I was 14 or 15 and she has always believed me, though is never able to give me many answers. She doesn’t seem to care that much about my case and makes me feel invalidated. But if I go to another Rheumatologist [who will be an adult Rheumatologist, not an adolescent Rheumatologist] they might not take me seriously either or even worse, might not believe me. I have so many emotions flying around, my head feels like a bit of a mess but I have decided that it would be best to ask for a referral to another Rheumatologist. Hopefully this new Rheumatologist will be closer to my University than this one was.

Achilles tendonitis and podiatry 

People who have been following this blog for a while may remember that back in December I was diagnosed with Bilateral Achilles Tendonitis (a fancy way to say inflammation of both tendons at the back of the ankles). I got my Achilles Tendonitis diagnosis just 3 weeks after I had been diagnosed with an Autoimmune disease so the thought was that it could be my autoimmune disease causing the inflammation. Makes sense huh? Well it isn’t quite that simple. Achilles Tendonitis can be caused by an autoimmune disease BUT it can also be caused by mechanical problems such as flat feet etc. And I do have flat feet. So my Tendonitis could be caused by my flat feet or by my autoimmune disease or both. 

My Rheumatologist referred me to a podiatrist that specialises in Rheumatology for some exercises/insoles that in theory should help strengthen position my feet in a way that reduces the strain on my tendons therefore preventing them from becoming inflamed because of my flat feet. But a podiatrist can not do much for inflammation caused by my autoimmune disease. The first podiatrist I saw believed that my autoimmune condition was the cause of the Tendonitis and it had nothing to do with the fact that I have flat feet because I already had insoles. I have given exercises to do and told to come back in a few months.

Those few months passed quite slowly. Although the Tendonitis was resolving, it was taking a long time and so by the time I saw the second podiatrist, I was better but not 100%. This time they decided to have a look at my insoles. It turns out that the hard plastic material my insoles were made out of couldn’t even support the weight of my podiatrists hand and would flatten out. Meaning that my insoles were pretty much useless as they couldn’t hold their shape when I stood on them. The plan from there was to get molds of my feet (involing me standing in a shoe box full of foam) and to get custom insoles which I should be getting tomorrow.

It took over 6 months for my Achilles Tendonitis to resolve, or almost resolve because I still had a few days where they were sore. But since the start of this month my heels have been getting progressively more sore. Not a good sign. As a physiotherapy student I am able to do a mini assessment (I can’t do everything because it’s actually surprisingly hard to assess your own feet) which is telling me that it’s quite likely my Achilles Tendonitis is back, and based on the area of my tendon that hurts (the insertion site) it’s quite likely that it is because of my immune system rather than if a different area of my tendon hurt which would be more likely a result of strain or injury.

Something that we also found with my tendons is that one is thicker than the other. This is usually a result of inflammation, so the 6+ months of inflammation I had earlier this year have caused scarring at my Achilles tendon causing it to become thickened. There isn’t an awful lot I can do about that unless it becomes so bad that surgical intervention is needed, which is not necessary right now. But hopefully with the help of these insoles we can reduce any inflammation caused by my flat feet and that won’t become any worse. 

I see my rheumatologist next week, on the 29th, and this will be another thing we have to discuss. I am getting worried now that the combination of me having more inflammation at my tendons and already having one ankle that has lost a significant amount of movement is going to cause problems for me. Walking is hard mainly because of the pain so I am back to taking Naproxen 500mg twice a day and topping up on Paracetamol as needed but that is only doing so much. Walking is also hard because of the lack of movement in my right ankle which means that walking on uneven ground or up steps that aren’t level is quite difficult because of the lost flexibility. I don’t think I wrote about the problems my ankle has been causing me when I was on placement (part of the physiotherapy course is called placement, where you go out into a hospital and learn how to apply the skills learnt at Uni in a hospital setting with real patients). With most patients I was okay to treat them while I was standing up which is perfectly fine for me, but for a few patients their treatment involved me kneeling. My ankle is not flexible enough for me to kneel, and at one point the pain caused by my needing to kneel resulted in me nearly passing out and almost being physically sick. This is a major problem because if I can not kneel, working is going to be difficult. I am terrified that I won’t be able to work in the future because I won’t be able to sit in the positions that I need to, to treat patients. I’m terrified that the Plaquenil/Hydroxychloroquine medication I am on is not helping me sufficiently so that I know I will be able to work when I qualify, and I know I will be able to finish my course. And I am really angry that my joints have got this bad that I am terrified about my future. This should never have happened, I should have started physiotherapy as soon as it was apparent I was loosing range of movement instead of being in the position that I have lost the range of movement and I don’t know how easy it is going to be to get back. Physiotherapy is definitely one thing that I am going to ask my Rheumatologist for. Along with discussing whether the Plaquenil is working sufficiently to help reduce the inflammation in my joints even though I am still swelling and sore and stiff.

Is it a flare? Or not?

I apologise for the lack of posts… I have been revising for a couple of exams at uni which hopefully went okay. I don’t get the results for a little while. It’s crazy that I only have 4 weeks of placement until I finish my first year at uni.

Today was my first day of placement and although my joints held up while I was there they seem to be hurting quite a lot more now. I’ve had a sore lower back and sore hips for a little while now, to the point where I am needing naproxen twice daily and paracetamol multiple times a day… I feel like I’ve taken a step back in terms of how controlled my joints are. I’m struggling to work out if the back pain is actually because I have a sore back or if it’s referred pain from my hips since my hips are also sore. Or if the back and hip pain is a result of SI joint issues. Either way, I hurt and it’s seriously pissing me off.

On top of the back pain and hip pain, my knee and ankle are also kicking up a fuss which makes walking around in placement more problematic… I have some joint supports that have helped in the past so hopefully that will help tomorrow.

I’ve also found my hips have been getting creaky… Usually this means stiffness but my hips are creaking once I’ve been up and about for hours. I wake up with them creaky and they are still creaky when I go to bed. My elbows have also been creaking a lot recently but thankfully they aren’t warm to touch or swollen, just creaky and sore so I am only keeping an eye on them, but I’m not too worried at the moment.

The warning signs of a flare that I look for are swelling, increased pain, heat at joints, increased stiffness and fatigue. So far I have:

• Swelling of my ankle, knee and wrists (periodically). 

• Increased pain in my lower back/SI joints/hips, knee, ankle, elbows, wrists, and various fingers.

• Heat at my knee and hips 

• Increased stiffness at hips, knee, ankle, wrists, elbow and hands

But I don’t feel any more fatigued than usual so I am watching and waiting to see what happens. I am hoping that this is a reaction to the added stress of exams and organising placement but there is also a chance that Plaquenil isn’t working as well as it was especially since I’m experiencing ulcers and hair loss… I see my rheumy in July so we can hopefully work out what’s going on then, if there is something going on.

You’d think that after dealing with this disease for so long, I would have more of an idea what’s going on with it… But it’s still a bit of an enigma to me.  

A failed 12 of 12

So I tried and failed to do a 12 of 12 today so I am going to incorporate the pictures I took today with just a general blog post/update.

Those of you who know me know that I haven’t slept well at all since February… Partly because the bed in my flat is not comfortable and partly because of my joints but mainly because the people in the neighbouring flat are so loud. They play instruments and video games at all times of the day and night so I am lucky if I only wake up twice in one night, most night I am woken up between 3 and 5 times, more if I am unlucky. But because of all this I am pretty exhausted so on days like today when I have to get up even earlier than usual I find it really hard. 

The past few months I have had increasing amounts of hair loss to the point I need to unblock the plug everytime I shower. Everyone experiences hair loss every day but when it has suddenly started increasing, it is a bit worrying. If you add that into my other new/increasing symptoms like my nose ulcers it pretty much points to autoimmune. But my mum was getting worried that I could be slightly anaemic and wanted me to get it checked out by my GP.

Today was the day I went to the GP about it. I only rang yesterday lunchtime and managed to get an appointment for 8.10 this morning which was surprisingly fast but did mean that it was an earlier start than usual. The second problem, or what I thought was going to be a problem, was that this appointment was supposed to be with a GP that I vowed I would never see again… Why? Well that’s because in December right after I had been diagnosed I went to see this GP who turned around and told me straight out that I was going to become disabled because I have an autoimmune condition that isn’t magically going to go away?! Who says that to anyone! He wasn’t an expert in my condition and I was literally so appalled and gobsmacked that I couldn’t even think of anything to say, I literally just sat there and gawked. But hearing that this was the only appointment available I decided to give him a second chance… 

I turned up at the Surgery for 8.05 so there was 5 mins before my appointment… Turns out I could have turned up at 8.30 and still been early.  

 

I had the whole waiting room to myself and the GP was half an hour late! Not a good start.

But when I finally got in with the doctor he was brilliant! Totally different to what he was like last time! I did wonder if I was actually seeing the same doctor at one point. I wasn’t met with the cold GP who appeared not to care but I was greeted by a guy who was trying his absolute to do his best for me. 

We started by checking my asthma out. I switched from Flutiform 125/5 (3-4 puffs twice a day) to Seretide 125/25 2 puffs twice a day which seems illogical because that is actually a decrease in the total amount of inhaled steroid I would be taking a day but I did it anyway and it worked!!! I have only had one attack (actually it was 2 but it was one after another so I am not sure if is a continuation of the first attack or if it was actually 2 separate attacks) which was my fault because I exposed myself to a trigger stupidly and then suffered the effects. But if we ignore that then I have had virtually no symptoms at all! Not even during exercise! That is pretty much a first ever since I was diagnosed! My GP was actually ecstatic, he was so happy for me. We even had a little competition with peak flows… He betted [Note: we didn’t actually bet anything] that I could reach 450… 1st blow was 420 so not quite there. 2nd try 440! 10 points off!!! 3rd attempt 440… So I didn’t quite get the goal but it was very close and 440 is a good peak flow value for me. And if you accompany that with my lack of symptoms your doctor will write down on your records ASYMPTOMATIC!!!! So the decision is to stay on this dose of Seretide indefinitely, either until I feel that I can step down or if I need a higher dose for some reason. It isn’t clear why my asthma is controlled on this dose of Seretide when Flutiform, Symbicort, or a combination of Clenil and Serevent didn’t help before but as long as it is helping I don’t really care about the science behind it.

Then we went onto the hairloss and ulcer. The GP thought that these were probably because of my autoimmune condition… Although a side effect of Plaquenil/Hydroxychloroquine is hairloss. Having said that, it is unlikely that the Plaquenil is causing my hair to fall out since I have been taking it since Novemeber and this is a recent symptom. As I said earlier mum thought that I could be slightly anaemic which I mentioned to the GP and he was more than happy to run some bloods for me. I got my ESR (Erythrocytes Sedimention Rate – I.E inflammation levels), LFTs (Liver Function Tests), HbA1C (looks at blood glucose levels over a period of time) and my thyroid function tested as well as the usual CBC (Complete Blood Count). 

The actual blood test was fine except I bled through a cotton wool bud and then proceeded to bleed out the side of the tiny little plaster they gave me.

 

But apart from that everything was fine and I only got 3 vials taken, which, if my memory serves me right, is the smallest number of vials I have ever given? It has bruised pretty well though.

So that all happened before 10am and that was essentially all I did all day, apart from some revision which was broken up by watching episodes of Orphan Black… Unfortunately I have finished every episode of Orphan Black on Netflix so I feel a bit lost now.

Like I said, I have massively failed on that 12 of 12 since I only took 3 photos but I was in my room literally all day apart from for the appointment  and the fire alarm that went off (if you’re a student living in halls you will totally understand). So there is an update and a totally failed 12 of 12… Maybe we should just call it a 3/12?

May Day & Knee Pain

I have had an amazing day today… It’s May Day/May Bank Holiday over here in the UK and we have a BBQ every year come rain or shine (literally we have all my been camped in my house before with Dad running in and out to turn the stuff on the BBQ because it was torrential rain). I got out on my Indo board for the second time this year and managed a good 20-25 minutes [check out my Instagram for photos] and I am starting to get the hang of some of the tricks I could do on it last year… My balance definitely hasn’t got any worse but it really does need improving. I think the fact that my knees and ankles are so stiff doesn’t help with my balance but maybe this will help to loosen them off with time. This year I am hoping to try my hand at surfing so hopefully Indo boarding will at least help a bit with my balance there.

A few of my friends came round and a fair few family friends came to the BBQ too which was great, and we had a good time reminiscing. It was such a good way to de-stress since I have a few exams coming up and revision is a real struggle this year. 

But now my knees hurt so much. I can’t even describe it, it’s just overwhelming pain from my throbbing knees and there is very little I can do about it right now. Isn’t it annoying when you have such a good day and then your health ruins it? I am actually regretting slightly that I went on my Indo board for so long, and I am regretting sitting out with my family and friends for so long when I could feel my knees getting sorer and stiffer, but I was having a good time and I didn’t want my knees to stop me having a good time. I am a firm believer of living every day as if it’s your last, because we do have a limited time on earth and because of this I try to do everything to my best ability and I try to have fun. I try not to let my joints get in the way but it’s times like this I just feel like I should find other ways of having fun no matter how much I like Indo boarding because this pain is not worth it.

But I know as soon as my joints settle down, I’ll be back on my board and loving life. I guess you can call me stubborn. I guess it’s sort of like an internal battle, working out which is stronger your autoimmune disease or your ability to battle it mentally. And right now, in the time it has taken me to write this blog, I’ve realised that I want to be stronger than my joints and I want to be stronger willed than my immune system and so the next day my knees feel good, I am going to get back on that board even though I know I will hurt like hell later. 

Hey... at least it has a dose counter!

A late night update

It’s quite late here so I am only going to write a quick update… At this rate I am only going to get 5 hours of sleep.

So the other week I had my review with my asthma nurse to see whether Singulair has worked for me… It had not, and in my opinion it was a waste of money. The only effect it had was to give me wacky dreams and to keep me awake, and was generally something that I didn’t feel comfortable taking anymore. My peak flow was in the green zone and I felt well controlled, but yet exercise was still an issue. My asthma nurse decided to grab another nurse in to help with the consultation and her advice was to see the chest consultants up at the hospital. I was not too keen on this idea though. I’m not going to go into details but unless you know me well, you probably wouldn’t know that I have quite a lot of stuff going on in my personal life right now and I do not need another consultant, that I don’t feel I need, complicating that right now. I managed to convince the two nurses to let me have a trial of Seretide again. For those of you who are new to my blog, I tried Seretide as a DPI for about 2 months back in 2012/2013 and found that it actually exacerbated my asthma, so this time we have decided to try the MDI [aerosol version] of Seretide and see what happens. The problem with Seretide is that you don’t get the dosage flexibility that you do with combination inhalers containing formoterol as the LABA component [AKA Symbicort, Flutiform, etc]. I used to take Flutiform 125/5 2 puffs twice a day on a normal day and 3-4 puffs on a day that my asthma was bad or on days I was exercising. However, I was prescribed Seretide 125/25 2 puffs twice a day so there is some mismatch in dosage that I was worried would mess with the control that I already had. But my breathing has been really good since starting it (with the exception of one attack which was due to me completely ignoring my triggers on a night out… so basically I caused myself to have an attack, not something I would advise!). I am still worried about what might happen if I get a cold, which is when I would normally increase my dose of Flutiform but right now things are looking up!

I also wanted to update you all on my joints, they have actually been feeling pretty good recently. Not much pain or morning stiffness at all. I am still getting swelling in my ankle, but we are now querying whether that is due to this autoimmune condition or whether it is due to a mechanical problem… I have a MRI in May to try and work out what is causing the pain and swelling there. However, this past week I have seen a massive increase in pain, and stiffness, and fatigue. In fact my joint pain was so bad at one point that I as seriously considering going to A&E… while you are sitting on the floor in your bathroom, trying not to vomit your anti-inflammatories up from the pain, A&E seems really, really inviting. But I got through it, the meds kicked in and I was mobile again surprisingly. I honestly thought that day was going to be a day from hell, completely spent in bed but I actually managed to go out for a run that evening. I spoke to Britt [AKA The Hurt Blogger] about this as I have read about similar experiences she has had, and she has found that exercise can reduce her symptoms, of course without meds exercise wouldn’t really be a viable option but together… they help. And that is what I have found too, the meds [and heat packs, and hot showers, and ice packs] help to get me moving, and once I am moving comfortably enough to do exercise, that helps to reduce my pain and reduce any stiffness that I still have. Don’t get me wrong I am still sore, I do still struggle but exercise helps to make my struggles easier…

I have also been experiencing some newer symptoms… or maybe they aren’t that new and I am only just recognising them as symptoms now. I have been having experiencing hair loss, literally I loose a handful of hair every time I wash my hair. I am so thankful that I have thick hair, I don’t know how I would look otherwise. I am pretty sure it’s not the meds because I don’t really take anything that can cause hair loss, and I have been on all of my meds [except from Seretide] for long enough now to discount that as a symptom. A friend of mine [who deals with autoimmune arthritis, among other autoimmune conditions] has suggested that it could be the inflammation from my condition causing the hair loss, which is a distinct possibility. I have also been getting nose ulcers… for those who don’t know what these are they are essentially the same as mouth ulcers but in your nose, and mine are incredibly painful! I asked a pharmacist about them and she suggested trying vaseline on them to try and soothe them a bit, and it helps to a certain extent. Since the end of February I have had about 5 or 6 and they are definitely not pleasant. These are two symptoms that suggest that my condition is not as controlled as I had thought and will definitely be brought up to my rheumatologist when I see her next… These may also help with narrowing down my actual diagnosis rather than just being labelled with an autoimmune disease.