Tag Archives: physio

#RABlog Week Day 3 – How my condition affects me

The third prompt for #RABlog Week is “Explain your RA”. Technically I do not have RA, I have another joint condition caused by my immune system attacking my joints that hasn’t yet been identified. I can’t explain what exactly is going on because I don’t know that myself but I can explain to you how my condition affects me, and how it makes me feel.

When I was diagnosed back in November I wasn’t ready for a diagnosis. I had gone for 7 and a half years with everyone telling me that they believed my pain but no one could tell me what was going on. I remember asking my Rheumatologist in despiration if she has ANY idea what was going on… her answer was “It might be autoimmune, it might not be. I do not know what is going on with you”. That was what I was told when I was 14. I wanted to cry, I was so frustrated at my body, at being sore all the time. I found it hard to explain what was going on to people because I didn’t have a diagnosis so I felt as if I was a fraud. Other people would go to the physiotherapist because of a sports injury and they knew how to treat it, I would go and they would say that they would try a treatment… but when it didn’t work I would get passed to a different physiotherapist. I saw 6 different physiotherapists in the space of 5 years. That is a lot of physiotherapy, and it is a lot of specialists who couldn’t help me, even though they truly believed I was telling the truth. They would all look at me with really sad eyes and tell me that they were sorry they couldn’t help, and that I should see my rheumatologist again. And every time that happened, any hope that I had built up was gone again and I felt really alone.

I felt that people would stop believing me because I didn’t have an answer for what was going on, and apparently no one else did either. So when my Rheumatologist turned around to me and said “I think you have an autoimmune condition, I want to start on you Hydroxychloroquine” I didn’t know whether to cry with happiness because I finally had an answer or to cry because I had found out that what I was hoping wasn’t true, was true.

As I said before, we haven’t quite narrowed down what condition I have. There is speculation that I could have Lupus or Mixed Connective Tissue Disease… or I could have Psoriatic Arthritis or Seronegative RA. We haven’t worked it out yet. I personally believe that I could have something similar to Psoriatic Arthritis or Seronegative RA due to my negative test results and the inflammation in my ligaments and tendons… and more recently, the whole finger that swelled up for 5/6 days for no reason [AKA dactylitis, although I need to get that confirmed by my rheumatologist]. I am lucky that I am studying physiotherapy so my lecturers understand what sort of problems I may have at uni but the problem with not having a name for my condition means that I can’t tell them straight out what I have and then have to explain the whole “I’ve been diagnosed but they haven’t said what it is yet… because I am a mystery to my rheumatologist”.

Of course all that emotional stuff stems from how my condition affects me physically, and also partly on how other people treat me because of my condition. If you look at me you cannot tell that I have a joint condition. If you had a line up and you had to choose someone who you thought was chronically ill, I very much doubt you would choose me. I look healthy… and to some extent I class myself as healthy but if you read my medical file you would probably picture someone who is unhealthy. I want to quote some things that my rheumatologist has written about our meeting and I want you to try to think about what a person with these ailments would look like.

“Lumbar sacral spine movements were grossly restricted”

“… restriction of plantar flexion subtalar movements and mid foot movements” [AKA restricted movements in my feet and ankles]

Morning stiffness remains a significant problem and can last between 1 and 3 hours”

“…feels extremely tired”

“… grossly restricted movements in neck and back”

If I saw a description of this written down I would expect to see someone who probably wouldn’t be very active, and probably wouldn’t be able to move very well because of all the stiffness. However, that is not the case. I am active, I can run, I can jump… Some of the time that is. And this is the thing with chronic invisible illnesses of an autoimmune nature, sometimes you can feel really good and the next day, or even the next hour, you can feel absolutely horrendous.

There have been times that I have used a disabled toilet because of the fear that I wouldn’t be able to get up off of a normal toilet without handrails. There have been times where I have sat in the disabled seat on buses because my joints couldn’t cope with me standing any longer. There have been times where I have been physically sick from pain. There are days where I can’t write, or when I find it hard to type. What I want people to learn from this is that living with an illness is very unpredictable and you have little control over which days you feel great and which days you don’t. I deal with pain, swelling, stiffness and inflammation every single day and yet some days I can still be “normal” whatever normal is. The point is that you cannot see my suffering so just because I don’t tell you that I am sore doesn’t mean that I am pain-free. Please remember that your sister, brother, parent, friend, relative, colleague… who ever you know with RA/Autoimmine arthritis, will most likely be sore every day and have symptoms every day. Just because you can’t see them, doesn’t mean that they aren’t having problems. If they are doing things slightly differently to normal then this is probably them compensating for said symptoms in a functional way… they might even ask you for help. Don’t make a big deal of it, just help them. Don’t treat them any different to normal, they are the same person they have always been. They do not need to feel more isolated by their illness because you feel the need to make a big song and dance about what they can/can’t do or what they may/may not need help with.

#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.

My condition, my decision… or so it should be

I think on this blog I tend to brush over just how much my joints affect me. I am not one to make a big deal out of things, and I don’t tend to complain that much… unless I am really struggling. However, even when my joints are relatively quiet they still cause problems in my daily life. I am constantly worried about doing too much, for fear of causing a flare. I now automatically analyse every task that I have to do in a day and prioritise what I needs done, and what I can do if I have the energy.

It’s been 10 months exactly since months exactly since my diagnosis, and I have just experienced something which is probably the most heartbreaking encounter since my diagnosis. One thing that I am not, is a quitter. I try not to let my joints get in the way of things. I push through, sometimes a little too far, but I do everything I set out to do. So when my lecturer tells me that I can’t take part in a module of my course because of my joints, I literally felt like crying. As part of the physiotherapy course you learn about manual therapies and manipulations which are aimed mainly at mechanical problems… AKA injuries and Osteoarthritis etc. so they aren’t supposed to be used in inflammatory joint conditions. Since I have notified the Uni about my condition, the lecturer for this particular module informed me that I will not be allowed to be used as a model in this module, although I can practice on other people. This means I am a barrier to my fellow peers. I am a problem. And I really don’t want to be a problem. Even though me being a barrier is protecting my joints, I still feel like I should be contributing in some way to the class, but the fact people can’t touch me during this module means that it is going to be incredibly hard to give people advice on whether they are doing things right or wrong, and it is harder for me to be able to perform things correctly since I don’t know what it should feel like.

I asked the lecturer if it would be possible to participate in sessions on joints that aren’t affected but he is scared that it could cause joint involvement in other joints, so I can’t. Even though I am absolutely devastated that I can’t join in… when it comes to my knees, I am really glad that I can’t participate. Even the thought of someone touching my knees makes me cringe. My ligaments have been sore continuously for 2.5 years now and I still can’t bare it when someone touches the ligaments. It’s just so painful… But having said that, I want to be able to participate in the other joints. I want to be able to show my enthusiasm for my course, I want to show that my joints don’t hold me back, I don’t want people asking questions about why I can or cannot participate. Even though this is for my own safety, it makes me feel like an outsider.

My illness is invisible, and even those who know about it don’t know the extent to which it affects me, both mentally and physically. Things like this really make me question how confident I am in my abilities. The choice I usually have on whether I can participate has been taken away, and I really don’t like it. To my knowledge, my lecturers have never dealt with a chronic, inflammatory joint condition so it must be hard to fully understand how much of an impact not having a decision causes. There have been times that my joints have dictated what I can or can’t do, and now I have people telling me what I can or can’t do because of my joints. It feels like I have less freedom than I had. And it makes me hate my joints. I had grown to accept my condition, and now I feel like I am at a point where I cannot accept it any more, and I am tired of it.

I am scared of the future now too. My joints have only caused me to be scared of the future once before, during a flare, but now I feel quite ill when I think about it. I don’t know what is going to happen, I don’t want my joints to dictate what I do, and I don’t want people to dictate what I do based on my joints. The only real control I have over this condition is deciding what I can and can’t do so the fact that it can be taken away is scary.

I have 2 mottos in life… the first is to appreciate everything and enjoy everything you get, because you don’t know when it is going to be taken away… and once it’s gone, it might not come back. Right now, I am really appreciating the control I had… and I’m not sure whether I am going to get as much of it back as I want. And my second one is to experience as much as I can in life… I guess this would be classed as one of the more negative experiences but I am going to try and grow from it. I need to learn to let go of the negative things and focus on the positive things, and this is one negative thing that I am letting go of by writing this post.

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.

Rough day? Tell me about it!

I’ve had a bit of a rough day today. I woke up feeling slightly more stiff and achier than usual… I had slept in a funny position and because my elbows were so stiff it was really hard to get out of bed. Trust me, unless you have some joint/muscle issues going on it really isn’t easy to just roll out of bed in the morning. I usually take a catalogue of things that hurt when I first wake up, today totalled a good 27 joints! That’s crazy! And then when I stand up I re-caculate to see if weight baring is adding anything into the pile… Only the ligaments in my knees and achilles tendons were added. So this mornings total was 27 joints hurt/are stiff and 4 joints are noticeably swollen.

Thankfully as the day went on the joints that hurt/were stiff reduced down to 7… I guess that means that the combination of Naproxen and Paracetamol every 4 hours is good for me.

I then had to go to Uni… I only had 2 lecturers and both of them were only 1 hour each. Normally if my lecture is over an hour long I get really stiff but if they are only an hour long I can usually get away with not being horrendously stiff at the end, although today was rough. I had made the mistake of sitting nearer the back of the room which involves more steps than sitting at the front of the room and I ended up practically waddling down the steps to get out of the room… and then some genius had decided that it would be a good idea to put my lecture room at the bottom of a flight of stairs, so more waddling ensued.

After uni I had to get 3 buses [totalling 1.5 hours] to get the the hospital for my first podiatrist appointment [she specialises in rheumatology]. The journey was really rough, joints seized up again and the bus practically broke down every time we had to go up a hill… It’s not a good sign when you are only doing 20mph on a motorway and really heavy lorrys towing massive JCB diggers can overtake you with ease. Anyway I finally made it to the hospital and got taken 30 minutes early [BONUS!!!] although the waiting room consisted on 3 hard, uncomfortable, plastic chairs so I was really glad to be taken early. The podiatrist told me that she could still feel swelling in both my achilles tendons with my left being the worst, which is odd since my right ankle is actually the most painful. She also gave me some exercises and showed me how to massage the fluid away, and checked my insoles which are doing the job fine. I go back to see her on the 8th of April to see how I am getting on. I asked her if she thought this was autoimmune related or if she figured it was from overuse/flatfoottedness but she said that she was almost 100% it is autoimmune as it is in both feet, and it came on during a flare, and I have had insoles for years which appear to be doing their job correctly. I’m hoping the swelling will be down by April because I am not sure what they will suggest next. Thankfully I see my rheumatologist in March so I will be able to report back that the podiatrist believes this is autoimmune rather than mechanical.

So that appointment only took about 10-15 mins and then I was back on the road on a bus headed towards the bus station where I had to swap buses. I had a 45 minute wait at the bus station which wasn’t too bad but wasn’t the best. I don’t know why but I always seem to attract drama! I was sitting on the bench waiting for my bus and all of a sudden there was this overwhelming smell of weed [anyone who has smelt it will know what I mean], I looked around and there was a guy half hanging onto a railing smoking a joint, completely stoned. Past experience has told me not to bother a person when they are stoned unless you know they won’t kick off at you so I left the guy be until he had finished and asked him if was okay, he looked at me said he needed help and then collapsed… Seriously! [I told you I attracted drama]. So basically all my old first aid training kicked in, there was no danger so I shouted for help… there was loads of people around but I still had to shout twice before someone decided to come over and help and it was actually a girl who was my age, all of the adults just stared [thats the by-stander effect for you, look it up]. I asked her to phone an ambulance and sent another guy to find security. Thankfully the guy fell in the recovery position so I didn’t actually have to do all that much to help him other than keep him comfortable and get as much information out of him as I could. I am almost 100% certain that this guy collapsed because of the weed, but he did manage to tell me that he had a blood clot somewhere in his body which could possibly have explained the collapse. In this time, I managed to miss my bus so I had to wait another hour! And then I had the bus ride from hell, with 2 children who just wouldn’t pipe down… I understand it is a long way for small kids to travel on public transport and I was patient with them but when a kid wipes their spit on my face I am not happy about it… I felt sorry for their poor granny who was trying to keep them under control.

So now I am back home and I have finally had something to eat, and I am relaxing, watching some netflix but man to day has been rough on my joints… they are so achy and swollen… and apparently my achilles tendons want to join in properly rather just being the nagging pain I’ve had for the last month… fun times guys.

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.