Tag Archives: rheumatology

#RABlog Week Day 2 – Managing fatigue

The prompt for Day 2 of #RABlog Week is managing RA fatigue… In short I am rubbish at managing my fatigue. I have a very busy lifestyle which lends itself to late nights and early morning starts which little time to nap during the day. I tend to survive on coffee, much like other students BUT having said that, I know when my body has had enough and when I need to give my body time to rest and recuperate.

I try to stay as organised as possible. If you looked at my bedroom right now you would probably think “How the hell is that organised?” which is true because my room is a complete mess at the moment. But I am usually quite good at keeping my room tidy. If I keep my room tidy then it means that I don’t have to do a massive [potentially exhausting] clean out when it gets to the point where I can’t cope. The same goes for my uni work… I try to stay on top of my work load by going over lectures and doing homework when I get it rather than waiting till the last minute and staying up all night writing and assignment. When I first started Uni, I was more interested in socialising than going home and doing my work which lead to me becoming so exhausted that I had no energy to do anything else except work in the end… and I didn’t even have enough energy to do that a lot of the time.

I also try to keep to a healthy sleep pattern so I try to get to bed by 12am and I don’t sleep past 9am at the latest… I try to go for 8 hours of sleep every night although most nights I get somewhere between 4 and 6. Along with this [attempted] healthy sleep pattern, I try to keep my day structured… Not like an army bootcamp where everything is planned to the second, but I try to make sure that I do at least 2 hours of work in the evening so I don’t fall behind, I try to keep to a cleaning rota, I make lists of what I am going to eat and make lunches in the evening so I don’t have to get up early in the morning to make something for lunch. Making lunches the night before has become particularly important now that I am trying a gluten free diet, since I am still not sure what foods contains gluten and which don’t so it is just easier for me to make lunches rather than get something at uni.

Along with sticking to a structured day, I try not to nap during the day because I find it harder to fall asleep in the evening… Obviously if I am so exhausted that I need to sleep then I do, but I try to limit my naps to a couple of hours max. I am not ashamed to admit that there are days where I have been so tired that I haven’t bothered getting out of bed. These days usually occur during a flare, when getting out of bed is difficult enough anyway… so coupled with the fatigue, I don’t get out of bed.

So those are a few things that I do to try and manage my fatigue… Personally I don’t find that it helps very much but everyone is different and I know a few people that this sort of thing works wonders for. I have actually been looking forward to this topic since the prompts were released because I want to see what the other bloggers write and suggest. I’m always open to suggestions.

There are also a couple of other things that I want to point out/make you guys aware of. Fatigue has been linked to the level of inflammation in a person’s body, obviously with RA and other autoimmune conditions, this is higher than in other, more healthy people. It sounds simple but if you can control the inflammation then this is probably a good starting point for managing your fatigue. However, the difficult thing is working out how to control the inflammation in your body. If I had the answer to that, I would be a very happy person… but I don’t so the only thing I can suggest is taking your medications as you have been prescribed them, and to work with your doctors/rheumatologist to try and find the best medication/combination of medications that work best for you. You might want to explore alternative therapies for coping with fatigue, or herbal medicine. I can’t say if that works or doesn’t but if you do decide to go down those routes PLEASE CONSULT YOUR DOCTOR FIRST. I don’t understand how herbal things or alternative therapies work, and you never know some might cause weird side effects so it is best that your doctors know what you are going to do.

Fatigue can also be caused by some deficiencies [e.g. iron deficiency] so if you find that you are becoming more tired than usual, and you aren’t flaring then maybe it is worth getting checked to see if you have any deficiencies… Most deficiencies can be easily corrects and if that is the case then that is great.

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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 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.

Knee bother and University

I have fluid on my left knee… That is not a good sign at all. Thankfully it isn’t too swollen or too painful and one of the benefits of doing Physiotherapy as a degree is that I have access to professional physiotherapists, some of whom have worked in the field of Rheumatology, and who can give me advice. BUT… and it is a big but, I need to feel comfortable about sharing my condition with the people I work with. I have a massive internal battle going on about how professional it is to share my health with my teachers, and although sometimes it is unavoidable, I really do try to keep my condition as separate from my working life as I can.

Only 2 of my lecturers know about my condition, and both times it took real guts to tell them. I am so used to hiding my condition from people, and avoiding talking about it. I am really good at shutting down questions if I don’t want to talk about it, and although I am always happy to answer questions about my condition to raise awareness, I always try to give a general answer rather than using what has happened to me as an example [although this predominately happens when I am talking to someone face to face, I am good at sharing things when I don’t have to see a person’s reaction, and I am also good at talking about issues with people who are going through the same things I am]… For instance I might tell of how people I know have faced some difficulties rather than saying exactly what I have been dealing with. However, since I have gauged the reactions of people as generally supportive I think that I might start coming out of my shell a bit when people ask me questions face to face.

The first lecturer I told happens to be the Head of the Physio department at my uni and was incredibly supportive. She told me that as long as I felt that I could cope with what was going on, she was totally fine with it. And as soon as I feel that I am not coping so well, that I should come and speak to her and we will get occupational health involved. She also told me to keep her informed about what is going on and she was genuinely caring towards me.  The second lecturer found out kind of by accident. As you all know I have had issues with the ligaments in my knees for well over a year now , approaching the year and a half mark, and I still haven’t had many answers about it. I still didn’t know if it was related to my autoimmune condition [although we have suspected it was]. We were doing a practical session on the knee and so I figured I would ask whether he knew what it was, and any exercises/stretches I could do to help them. Again, he was totally understanding and listened to me explain how I have no idea what happened but the ligaments [LCL and MCL] in my knees have been sore for well over a year and did he know anything that could help. The first thing that he asked me what if I have autoimmune arthritis, or a family history of RA… That hit me like a brick, I wasn’t expecting anything like that. He pretty much hit the nail on the head within 30 seconds of me asking the question… something that every other health care professional I have seen over the last 8 YEARS have only just been able to figure out. I explained to him about my diagnosis, and told him about the morning stiffness, which on that particular day was 3 hours, and asked that because it was most likely autoimmune related was there nothing we could do to treat it… My lecturer was then nice enough to give me a good 30 minutes of his time and explain all the different exercises that I could do to help different muscle groups in my upper legs so that we can reduce any patella mal-tracking and basically increase the strength of the muscles in my legs to try and reduce any problems I might get in the future. The only problem is that I haven’t been able to do the most beneficial exercises on my left leg because of my knee…

Which brings us back to the fluid on my knee. As part of the assessment that we were taught to do on knees we had to learn how to test for fluid on the knee… usually done by 2 special tests, one called the patella tap [where you brush the fluid down from the upper leg into the knee and tap on the patella, if the patella bounces back up then there is fluid in the knee, if not it means that the patella is resting against the femur where it should be] and the bulge sign, where you brush the fluid away from the inside of the knee then brush down the outside of the knee and if you see a bulge appear on the inside of the knee then there is fluid on the knee. [Note: there are other special tests but these are the ones we mainly focused on]. When we were practicing these in class mine were negative… no fluid in the knees! However the other day when we were practicing them for out exam, my right knee was negative [wooo!!!] but the poor left knee was positive… I had a positive patella tap in my knee [Note: we didn’t try the bulge test]. We repeated this a few times to check but it was definitely positive. On the bright side, at least I know what a positive patella tap looks like.

On Monday I will have been taking Plaquenil [AKA Hydroxychloroquine] for 13 weeks, I was told it should be working by the 12th week but that hasn’t really happened. My morning stiffness is bouncing around all over the place, from as little as 1 hour, all the way up to 6 hours… And I am getting stiff when I am sitting down too long. Most of my lecturers are 2 hours long and I can’t stay sitting for that long, it’s too painful. I have taken to leaving the lecture once an hour to “go to the toilet”, in other words to stretch my legs… but that means that I have to try and sit at the end of rows and nearer the front so not to disturb everyone… It’s difficult sometimes. A lot of my friend’s on instagram have been telling me not to give up on Plaquenil, as I was feeling quite disheartened that it wasn’t working as well as I had hoped. Some of them found that it took longer than 12 weeks for plaquenil to kick in, and other people found that when they came off it they found that it had been helping but it was a gradual improvement, so gradual that they hadn’t really realised until they came off of it. So I am hopeful that I am one of those people!

On Wednesday I am headed back down to my rheumatologist’s office to see a podiatrist who specialises in Rheumatology. The thought was that he could maybe help with new insoles to help with the achilles tendonitis which has been on-going for a good 3 or 4 months now, although thankfully it is quite mild right now. And then in March I see my Rheumy again and we decide where to go with the treatment.

This year is going to be a good year

First of all, HAPPY NEW YEAR GUYS!!! As if it is 2015 already! Last year has gone so fast, it’s kind of unnerving…

I celebrated New Year on 31st Dec 2014/1st Jan 2015 like most other people in the UK but I was having quite a rough time… I had been suffering with a lot of muscle weakness over the past few weeks which had got progressively worse to the point that the energy I needed to get out of bed, or even to stand up was so massive that I pretty much spent a lot of my day lying down and not moving out of my room. I was also having quite big problems with fatigue which contributed to me not getting very much done each day. I didn’t really know what was going on since I haven’t really experienced muscle weakness as one of the symptoms of my autoimmune disease before, but I did know that muscle weakness and fatigue are both symptoms of loads autoimmune diseases and considering my diagnosis is possibly one of four it was quite possible that the muscle weakness was a symptom of mine. I had all these thoughts going through my head… “This would be the 4th symptoms I have to fit the lupus criteria… maybe it is lupus?” “Is it the plaquenil?! Am I having a reaction?” and things like that… And then my Dad came down with a stomach bug, and then my brother, then my uncle and it went all through the family and then hit me…. I am thankful to say that I am over my stomach bug after loosing 6 pounds over the course of a week and a half, and I have more energy… And no more muscle weakness… Which suggests that it was this bug that was causing my symptoms in the first place. It is so difficult to identify exactly what is causing your symptoms when your body could be causing every symptom! Because of this stomach bug, my 2015 didn’t start off well so I decided that my new 2015 would start from the 3rd and I would leave my stomach bug, and muscle weakness back in 2014. So far it has worked well!

From the 1st I started doing my physio exercises which are essentially stretches that we hope will make me more flexible, or at the very least will mean that my muscle tightness won’t play such a significant role in the loss of movement I have at my joints. 7 days on and all I have noticed is that my muscles are sore… but physio is something that takes time and I am more than willing to work on it.

I also got my appointment through for my podiatry appointment which will be on the 18th February. I am hoping that the podiatrist will be able to work out whether my achilles tendonitis is inflammatory or mechanical and based on that will be able to treat me accordingly… I was checked for new insoles in the summer, and got 2 pairs then and since my feet haven’t grown I don’t see why I would need a new pair but it could be that my insoles just aren’t doing the trick, in which case it would be an easy fix. On the other hand it could be inflammatory and steroid injections might be needed, and if my Rheumy feels that my tendons are affected enough, a change of meds may be in order but we shall come to that bridge if that is the situation.

I next see my Rheumatologist in the middle of March and so far there isn’t an awful lot to report on the Plaquenil front. 7 weeks on and there hasn’t been all that much change… I have found that the ligaments in my left knee, especially my Medial Cruciate Ligament, have been swelling which makes my knee look way weird but my actual knee itself hasn’t been swelling as much as it was before. Don’t get me wrong, it still swells often, but I have been finding that if I do the some of the stuff that used to make it swell, it isn’t swelling as much. I wish the same could be said about my right ankle… it is just being a pain in the backside! It swells when it wants, it gets warm to touch, it wakes me up at night, I find it difficult comfortable, but then other times it doesn’t feel too bad. I just don’t understand it. Now I have been diagnosed with Raynaud’s I am reluctant to use ice treatments on my extremities so it is difficult to know what to do about it but I have found that if  raise it and support it well at night it isn’t as bad. This is definitely going to be a talking point at my next appointment, along with my ligament and tendon issues.

One thing that I forgot to mention to my Rheumy last time I saw her was that I STILL have costochondritis that is still quite painful despite high doses of Naproxen and Paracetamol. This has been going on for years now and I have accepted that it is one of those things that I am going to have to live with but I would prefer my Rheumy to know just in case it means something to her… The reason it took so long for me to be officially diagnosed with Raynaud’s was because I didn’t mention my feet getting really cold because I had just got used to it, and it was only when my Rheumy actually questioned me on it and then gave me all these guidelines about picking up cold things did I realise how serious it could be. I’m also going to ask whether my kidney function has been checked, not because I feel there is a problem but because I know that lupus and NSAIDs can mess with kidneys and since I only have one, I am not taking any risks when it comes to that. I haven’t had my kidney checked since I was a kid so I would rather be cautious and know everything is fine than worry that I could have missed something.

I am feeling quite good about 2015, I am no longer searching for a diagnosis and treatment. I feel that I am in more control of my health because I have a health care system that is now working with me, rather than not working at all. Even though my condition is not actually under control yet, I still feel good mentally because I feel that my doctor and I are on the same page and we are finally getting somewhere. This year is going to be a good year.