Tag Archives: diagnosis

#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.

Advertisements

Some progress, sort of… and a plan of action

I’ve been officially diagnosed for 3 weeks now and I think I have finally got over the initial shock. I went into that appointment expecting to be told to come back in 6 months because they didn’t know what was going on like usual, but instead I came out with 2 diagnoses of autoimmune conditions, a script for a DMARD [Disease-Modifying Anti-Rheumatic Drug] and an intramuscular steroid injection… That’s a lot to get your head around when you don’t think anything is going to happen.

I just wanted to up date you all on what has been going on with me since then. So first of all, I have noticed my Raynaud’s symptoms are popping up more than they used to… I.e. my hands and feet are constantly cold, and they change colour to this awful shade of white, they feel numb, and then when blood starts to return to them they go bright red and burn… pretty typical Raynaud’s symptoms there. I’m not sure whether I am just noticing these symptoms more because I have a diagnosis now and I am paying closer attention, or if the cold weather is causing more issues? I presume it’s a bit of both, however I have noticed that if I pick up a cold drink, or something out the fridge or freezer, my Raynaud’s symptoms flare, and that never used to happen… I virtually always wear gloves when I am outside now but it’s the activities in normal life that are causing the issue now, not the weather… I am definitely going to bring this up with my Rheumy in March, although I fear there isn’t an awful lot she can do other than offer advice. I have now started pouring my drinks into mugs with handles so my hands aren’t in contact with the cold for that long, and my Rheumy suggested wearing rubber gloves to get things out of the freezer so I will probably start doing that as soon as I get to the shop [life has been pretty hectic these last few weeks].

As for my joints… well they aren’t doing that great. I think I can officially say that the intramuscular steroid injection hasn’t helped, which is a shame but at least I know that it doesn’t help me now so I can [hopefully] avoid being jabbed in the arse again! I’m still experiencing about 2 hours of morning stiffness every day, my knees are swelling, my ankles are swelling, my hip is aching so bad, my PIPs [Proximal Interphalangeal joints… the middle knuckles] are sore, and puffy and turn pink so I think it’s reasonable to say that the steroid hasn’t helped me that much… In fact I am feeling so rough that I rang my GP and I have made an appointment for the 15th to hopefully sort out some symptom relief for over the christmas holidays until I can see my Rheumy, but I am not sure if I am going to manage through this week so I am going to ring my Rheumatologist’s advice line tomorrow and leave a message to see if they have any ideas on what to do. I am at the point where I would take a burst of pred, and I actually think I need one but I had a steroid injected into my butt just 3 weeks ago so I don’t know if you can take oral steroids so close to having an IM injection? I presume so because my old GP was happy to offer me 2 bursts of pred within a month of each other, but that will be something to bring up with my GP and Rheumy. I have also noticed a few new symptoms that have been gradually increasing in severity. The first is that my heels hurt, especially first thing in the morning… I can’t decide if it is actually my achilles tendon that is sore or if it is the attachment of my achilles tendon [AKA enthesitis] or if it’s both, but I am going to try and investigate a bit further into that. And the other is that my SI joints have been hurting, this has happened in the past when I have flared so it does kind of make sense that they are hurting now since I believe that I am flaring but it is really painful this time, more so than last time and it is really stressing me out because I can’t find a comfortable position… but such is life.

In the past I probably would have just dealt with my symptoms, and I am in two minds whether I am making this a bigger deal than it actually is but I am currently on my first physiotherapy placement at my local hospital which involves being on my feet for about 8 hours solidly a day [I usually get between 15 and 30 mins sit down time in that 8 hours] and I am actually really struggling, and some of my seniors have noticed it too and made the odd comment… I was taking part in a Pulmonary Rehab class to learn about what patient’s do in it, and it was obvious to everyone that my joints were far stiffer than everyone else’s despite all the patients being at least 5 decades older than me… slightly embarrassing as you can imagine.

This past week I have been really pushing myself on the exercise front. I have found a fab little gym that is outside and is on the riverside near where I live, and it has a lovely view of all the bridges, it’s really beautiful actually and is one of my favourite places in the world right now… I’ve managed to go to the gym about 3 times last week, and I have been again tonight. I find it really good to give my joints a good work out and it is helping with my joint stiffness, especially because I tend to go after I have been sitting down in a chair for a couple of hours doing work but it hasn’t really helped much with the pain yet… I also invested in a foam roller which hurts like hell but I can really feel it helping with any muscle tightness that I have. I am going to try and keep up this intensity of exercise for as long as I can, and I am going to try and get to the swimming pool at some point this week too [the swimming pool has really odd opening times which makes it difficult for me to go] which will hopefully help with the stiffness. I also see my new Physio on the 17th so I am hoping that she can help me out on reducing the stiffness.

All in all I think I am coping quite well with everything, the side effects from Plaquenil [mainly heartburn which meant I could only have one meal a day for 2 weeks] have subsided significantly, and I am still optimistic that it will start working… It can take up to 3 months and I have only been on it for 3 weeks so I’m not surprised I haven’t noticed any improvement yet… and if worst comes to the worst and Plaquenil isn’t the medication for me, well there are plenty others that I can try, of course I would rather this one work but I’m not going to get too discouraged if it doesn’t. This is the start of my journey into finding the treatment regime that works for me, and I am well aware from my experience with asthma, and from hearing about other people’s journeys that I might have a long way to go till we find the right med/combo of meds for me, but actually being started on meds is a move in the right direction!

It’s official, I have a diagnosis!

I never thought that I would ever be writing this post. Ever. I mean I had thought about it, I had longed for it but I never thought that this would be real. I have a diagnosis guys… I have an actual official diagnosis from my Rheumatologist. I have Raynaud’s and an, as of yet, unidentified autoimmune inflammatory condition. It’s been years and years but I have finally got here.

It’s weird because I was so stressed about getting fobbed off again by my rheumatologist but she came through for me just when I was getting ready to give up on her and try someone else. All of my physio’s have said how good she is at her job, but until today I had never actually seen why people were saying that.

It all started like a normal clinic appointment, i.e. sitting in a waiting room,  surrounded by people who are decades older than me, and as usual I was the youngest patient there. There was quite a lot of medical students hanging around in their pale blue scrubs too, and I have come to the conclusion that this must have been their first experience in Rheumatology based on how clueless they were. I got called in to see my Rheumatologist early [this was unheard of until today… I guess today was a day of firsts] and she asked if 2 of the medical students could sit in on my appointment, which of course was fine. She asked me how I was doing and I told her that I wasn’t the best. I told her about my issues  and how my joints are being problematic on nights out which is preventing me having an enjoyable time. The worst my joints have been was this past Thursday where my knees and ankles swelled up so much, and were causing so much pain that I had to be carried around. Literally, one of the guys on my course had to pick me up and carry me around with him.

This was the main cause of me having to be carried around... My ankle was so swollen you couldn't see my ankle bone any more.
This was the main cause of me having to be carried around… My ankle was so swollen you couldn’t see my ankle bone any more.
This was how swollen my left knee was a few days after Thursday's night out, it had reduced by quite a lot thankfully but was still swollen.
This was how swollen my left knee was a few days after Thursday’s night out, it had reduced by quite a lot thankfully but was still swollen.
Another picture of the swollen knee
It’s slightly easier to see the swelling in my left knee on this picture [right hand side of the picture]

My Rheumy totally understood how embarrassing it was to have to be carried around on a night out, especially by someone who was on the same course as me, which was nice of her. She also asked about my morning stiffness which is now lasting about 2-3 hours every morning and then about 1-2 hours after sitting immobile for any longer than about an hour. She agreed that, that wasn’t fair on me and was too long, which again was nice as she doesn’t usually say anything. She examined my knees and found crepitus [cracking/grinding noises and sensations] in both knees but more so in my left knee which makes sense as my left knee is significantly worse in terms of pain, stiffness and inflammation than my right knee. I also let the two medical students have a feel of my knees although neither of them could find crepitus in my right knee, which we think is because of all the movements they were getting me to do was loosening up my knees so they were less stiff than they were when my Rheumy has examined them. My Rheumy also didn’t find any fluid on my knees which is excellent news, even though I wasn’t expecting there to be any fluid.

My Rheumy then looked at my ankles and again found no fluid but found quite a lot of restriction in the range of movement, although this is nothing new and has been the case for the past few years. However she did notice that my feet were extremely cold, and my toes were “like ice blocks” which I always assumed was normal for me. She asked if my feet ever change colour, which they do into a disgusting looking white/grey/blue colour. She then looked at my hands and found the same, that my fingers are freezing cold and change colour when they get really cold. Based on this I was diagnosed with Raynaud’s, a condition that causes discolouration of fingers and toes because of excessively reduced blood flow to the extremities… Mine occurs usually because of the cold, but we believe that it is autoimmune in my case [not everyone’s Raynaud’s is caused by the immune system attacking it’s self].

My Rheumatologist felt that my joint pain, swelling and morning stiffness had been going on long enough now that we should probably start treatment so I was prescribed Plaquenil [Hyrdroxychloroquine] 200mg twice a day. Plaquenil is a Disease Modifying Anti-Rheumatic drug [DMARD] which should basically reduce the activity of the condition [even though it still hasn’t been identified] and hopefully will help with the inflammation I experience. However, Plaquenil can take up to 12 weeks to work so I was given a steroid shot intramuscually into my bum [yes it was painful!] which should hopefully help out with my symptoms until the Plaquenil kicks in. Apparently the steroid should work within 36 hours which I am really looking forward to, because as I sit here I am really struggling with knee and ankle pain despite Naproxen and paracetamol.

This is the first of many Plaquenil tablets that I will be taking.... LETS DO THIS!
This is the first of many Plaquenil tablets that I will be taking…. LETS DO THIS!

I am struggling to comprehend that I now have a diagnosis, it has been so long that my emotions are literally a mess… Relief, anxiousness, worry, happiness, there are too many to list. I am glad that I have a diagnosis, and I am glad that I am getting the proper treatment, but I am slightly upset that I actually do have an autoimmune condition but that’s expected right? I mean, I always knew that I had something going on, but no one wants to be sick! As you can see, I am still not 100% sure of my emotions, which is perfectly fine, today was a lot to deal with, but the main thing is that we are on the right road now!

I see my Rheumy again in March to see if the Plaquenil is working, fingers crossed it does!

Reflection

Yesterday was a very emotional and trying day for me, I feel that my frustration was probably shown very clearly in yesterday’s post, but I wanted to write another post today.

It’s quite hard to take everything in when you are at a doctors appointment and I still find it hard understand everything that has happened even after the appointment. That is partly because so many things happen in an appointment, partly because I was so worked up about the things that went on in the appointment and partly because I am really, really sleep deprived and so I think it’s good to reflect on how the appointment went after you have calmed down a bit, and gotten the most extreme emotions out.

So thinking back to yesterday, I try and work out how it could have gone better. Well I think my first mistake was that I didn’t slow down at all. I had an hour and a half exam in the morning and then I went straight from the exam into my doctors appointment. Unfortunately, I couldn’t just avoid an exam but I could have taken 5 minutes to read through what I wanted to discuss with my doctor and just to calm my nerves a bit.

The next thing I thought about was what was actually said in my appointment… I initially didn’t really think anything that useful was said in the appointment because my doctor doesn’t say an awful lot of things aloud, she either writes them down or keeps them locked away in her head. I thought that the best way around this was to ask direct questions but I ended up getting vague answers, I asked open questions and I got vague answers. Basically the majority of the things my doctor said was vague. But I did find out that I am HLA-B27 negative, and I did find out that my inflammation markers are either within normal range or slightly low. That’s interesting. I also found out that my MRIs have shown no inflammation which is also interesting. Although none of this makes any sense to me right now, I’m sure that in the future
I will know what this means. [Note: I do know what having normal inflammatory markers etc means, what I am trying to say is that I don’t know what they mean in my case. Everyone is different!]

One of the most difficult things about my doctor is that I can’t understand her. During my examination she asked if things hurt which they did but she didn’t say anything about that. I told her that my ligaments has been bad, she didn’t say anything about that either, but she did give them a good prodding so she did listen, she just didn’t acknowledge what I said in any kind of obvious way. Facial expressions are usually quite helpful when you are having “read” a person but my rheumatologist has no facial expression! It’s like speaking to a brick wall, she never smiles, she never frowns, she never portrays any emotion. Unlike a lot of health care professionals I have spoken to, I have no idea what she is thinking, she doesn’t let on one single bit!

Although I came out if my appointment thinking that I hadn’t gotten any further with anything I have found that my doctor hasn’t given up on me just yet. She has told me to come back when I am flaring, and she is going to try and work out a plan of action based on my latest bloods. I came out of that appointment feeling useless and horrible, and that wasn’t the doctors fault, it was because I had built myself up to such a frenzy before going in and it was because I was expecting the impossible. That was daft, and I should know better but I am feeling much more confident now that I know exactly has gone on in my appointment and my emotions aren’t clouding my understanding. I will admit to having a good cry last night but I feel so much better for it! This is the most positive I have been about my joints in a long time.

My physio didn’t phone me last night like she said she would but that hasn’t really upset me. It’s given me longer to think about what is going to happen. I AM getting hydrotherapy which I fully believe will help significantly. I AM getting new insoles soon, so
I can speak to that physio about the issues with my feet, toes and ankles and hopefully get some answers about that then. And although I didn’t manage to get an NSAID out of my Rheumy (I don’t actually know if she knows I haven’t taken Indometacin in over a year) I know that I can go to my GP and get one.

My appointment absolutely crushed me yesterday but thinking about it today, I feel like I do have a chance and it was just one of those horrible days that I can put behind me now.

A breakthrough… Finally

Today I finally made progress with whatever is going on with my joints. I got the letters that my rheumatologist has sent to my GP, only 3 of which I actually received.

The letters said that she was looking into Seronegative Arthritis in November 2010 because of “gross restriction” in my lumbar spine. She also ordered my HLA-B27 but unfortunately the result is not in any of the letters so I am going to assume it was negative, although I shall ask my Rheumy about this in May. However, my Rheumy did find that my ANA is positive, but that this may not be significant.

Although my Rheumatologist did say that she expected me to be extremely hypermobile but when she examined me she found the opposite, and in fact I am incredibly stiff. She found restriction in all of my joints including the joints in my mid foot which may have been the start of when the bones in my foot fused. But all that was back in 2010…

In 2012 my Rheumy found “gross restriction” in my neck, which was no surprise since I was in the middle of a flare and could hardly turn my head. And as it turned out my ANA was still positive so it wasn’t a fluke. However, this is slightly confusing because I read on the computer (okay, I sneaked a look at the computer when my doctor went out of the room) that my IgM was positive… But none of this is in the reports.

Another thing that is missing from my rheumatologist is my ESR and CRP results so I have no idea what my inflammatory levels are, I don’t know whether they are usually low and are at the higher end of normal when I flare. However, I have since found that you can actually request a copy of the blood tests to be sent to you, so I am definitely going to do this when I see my Rheumy.

The results of my scans are written briefly, which I’m not too happy about either. There are no mention of comments from the radiologists… And surely, since my foot has fused, something would have shown on my Nuclear Bone Scan? But nothing was mentioned…

The last letter was from my Physio to my Rheumy, asking her to see me. It talked about the pictures, I had shown my physio, saying that it showed that my joints were red and inflamed and it also said that my joints were tender and movement was restricted.

There were more than 3 letters but they all pretty much said the same thing, although one did suggest that my Rheumy was looking more into the possibility of Lupus rather than inflammatory arthritis. However the letter after that one didn’t have any mention of lupus so I guess they discounted that?

On each letter there is a section for diagnosis, and mine says Arthralgia (joint pain), morning stiffness and ANF positivity (which I presume means a positive ANA. But I’m not entirely sure what the “F” stands for, maybe Factor?).

I thought that these letters would help shed some light things, but in actual fact if has just confused me more. It’s pretty obvious that my Rheumatologist has no idea what is going on, and neither do I. I’m beginning to think that my Rheumatologist was right about me being a medical mystery. But I really hope that my new symptoms, namely swelling and ligament involvement, will help with the diagnosis process. None of the letters mention anything about costochondritis or bursitis, which I have definitely mentioned to my Rheumy before, so that is definitely also going to be mentioned in my next appointment.

20140403-215341.jpg

Question: How do you cope being undiagnosed for so long? ~ Lauren

Hi Lauren! No one has ever said that being undiagnosed is fun, because it isn’t. It’s a constant battle with the system to get appointments, to get the treatment that is available to you, and in truth I find it really hard. But the fact is that you can’t diagnose yourself, even if you are 100% sure of what is going on, you have to wait for a health care professional to work it out.

I find that blogging about the trials and tribulations of being undiagnosed is quite a neat way to get my emotions out and to *hopefully* help others who are having similar experiences. Through blogging, I have become a member of the chronic illness community, even though I don’t have a diagnosis for whatever is going on with my joints. I speak to people from all over the world on a daily basis, and I think that is really cool, especially because even though you live thousands of miles away from each other, you all have something in common.

If you are struggling with being undiagnosed, I’d suggest having a look on twitter for people with similar conditions/symptoms and having a look on Facebook for support groups, and if you want to… why don’t you try your hand at blogging too?

Guest post – Juvenile Arthritis through a mother’s eyes

[Editors note, I would like to thank Jess in advance for writing this superb guest post for MyLungsMyLife. I have been following Imogen’s journey on Facebook and I really can’t describe how much of an inspiration Imogen is. It is an honour to share her story.]

My name is Jess. My daughter Imogen has Polyarticular Juvenile Idiopathic Arthritis. She was diagnosed in February this year, after 3 of her joints swelled up. We were extremely lucky in the fact that we were diagnosed quickly. Although Imogen had probably had it for months before we saw the signs. Imogen was diagnosed just before her third birthday.
Since diagnosis we have endured many hospital visits and numerous treatments including:

– IV & Oral Steroids – great for a quick “fix” but horrific side effects (temper tantrums, not sleeping, behavior difficulties)
– Methotrexate – Weekly injection of a chemotherapy drug
– Joint Injections under General Anaesthetic – (We’ve done 3 lots. Last time she had over 20 injections)
– Anti Inflammatories by the bucket load (Ibuprofen, then moving onto Naproxen)
– Physio and Hydrotherapy – (Imogen hated Hydro, but loves her Physiotherapist)

We are now waiting on a new medication called Enbrel which we are hoping will give some long term relief to Imogen and her poorly joints.
Throughout all of this Imogen remains a happy, smily, carefree child. She never complains that she is in pain, never complains about spending time in hospital and tries as hard as she can to just carry on.

At the moment she has about 15 joints that are active, even after steroid injections into the joints.

I feel that there is not enough support out there for parents with children who have arthritis. I remember feeling so alone when Imogen was first diagnosed as I didn’t know anyone else whose child had it. Although after a lot of google searches I found a few places to vent my frustrations!
I have now set up a website http://imogensarthritisjour.wix.com/ourarthritisjourney and also a forum
http://ourarthritisjourney.proboards.com/ so that there is a place for parents and the young sufferers themselves to come and discuss their experiences and reach out for support if they need it.

Arthritis has changed our lives now, and it’s hard to go forwards not knowing what the future holds for my daughter, but there is one thing that I am totally sure of. Imogen will not have less of a life in any way shape or form. Yes it may be different from her friends, but her father and I will make sure she misses out on none of the childhood memories that need to be experienced! She has already done sports day this year and also her first Christmas play!

I often say to people that my daughter is my hero. To go on smiling when she must be in so much pain, it’s unbelieveable, yet she does it daily.

So yes my daughter has arthritis, but the arthritis certainly does not have her! 🙂