Tag Archives: autoimmune

#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.

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#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.

#RAblog week, possible dactylitis and going gluten free

It’s been a while since I last blogged and quite a few things have been happening.

I will be participating in the first annual #RABlog week taking place from the 21st-27th September. This is where a bunch of bloggers write posts using pre-selected topics (and some wildcards) to share their experiences with RA… I don’t actually have RA but I do have an autoimmune condition that causes pain, swelling, inflammation and stiffness at my joints and means that I can be treated with the same medications that RA is treated with… My current treatment being Hydroxychloroquine, Naproxen, Paracetamol and Voltarol.

  
Secondly, I have been having a lot of problems with my little finger this past week… I wouldn’t have thought that one finger could cause so many problems but it has been painful enough to wake me up numerous times a night, even with naproxen and paracetamol! In addition to the pain, the whole finger has swelled up and become super stiff. I am concerned that it is dactylitis (inflammation of an entire finger or toe, usually associated with Psoriatic Arthritis, infection, Scleroderma and Sickle Cell anaemia). Psoriatic arthritis is one of the condition that my Rheumatologist thinks I could have so as soon as my finger swelled up, I became quite worried… The last time I saw my rheumatologist she suggested that my immune system may be sorting itself out but this week of swollen knees, ankle, returned Achilles tendinitis and now this finger accompanied with increased fatigue, stiffness and pain… I’m not convinced my immune system is doing anything except hurting me more.

I have got to the point that I am so sick of being sore and stiff that I have decided to change my diet and attempt going gluten free in hopes that this will help reduce the inflammation I am experiencing. I move back to University tomorrow ready to start my second year on Monday so I am going to start my gluten free diet on Monday. A new year, a new start ey? Sounds good to me! 

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.

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?