Tag Archives: joint pain

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.

Advertisements

The freezing fog, stiff lungs and stiff joints

Where I live there has been a freezing fog all day, temperatures havent got above -3 all day!

I said in an earlier post about my triggers that I wasn’t sure if my asthma was set off by the cold weather since I can go skiing with absolutely no problems what so all but today within literally seconds of going outside I was coughing up a lung which wasn’t too pleasant. So yeah many puffs of ventolin later the lungs still arent feeling too good, they are still very tight and I can definitely hear a wheeze throughout my exhale, my peak flow is down to about 63% from the 70ish% it has been hovering at since about October :/ I never really realised how much of a difference 7% could make but today I can really feel it. I guess my only option is to keep going with the ventolin.

The cold has really got to my joints as well. Despite my pretty lame efforts to keep my fingers going they all pretty much seized up by the middle of first lesson which was bad because I had biology which involves a lot of writing. To be honest I did ignore the warning signs of this flare. When I am about to flare my elbows get sore (strange isnt it) and for the past week or so guess what’s been sore? Yes your right! My elbows. So now I have to add an extra 30 minutes to my morning regime, an extra 10 minutes to get out of bed, and extra 10 minutes in my boiling hot shower and an extra 10 minutes to soak my hands in a basin of hot water, oh and of course dose up on ibuprofen and paracetamol (even though I have been prescribed. Indometacin for pain/swelling relief which my GP has yet to sort out, ive been waiting since February)

I get the bus to college which takes 35 minutes, but it’s good because even though the windows leak so the seats are frozen solid with ice and even though there is no heating I get a seat which does help a lot with my back and neck pain, but since the knees are flaring, after 35 minutes they dont want to straight anymore which is a real pain in the bum when you have to climb down some steps to get off the bus. Anyway I think I’m going to soak my knees tomorrow for an extra 5 minutes on top of everything else and see how I get on. Hopefully this is only a mini-flare and it won’t last too long.

An okay rheumy appointment

So I had my rheumy appointment earlier today. I took the day off college so I could go. She didnt really say anything helpful to be honest just that in my last blood draw I still had all my antibodies that indicate juvenile arthritis including a positive rheumatoid factor (but that was back in January) so we took bloods again.

image

Thats my little battle scar, where the needle got me 🙂 If anyone ever asks about does getting blood taken hurt my usual response is “I think getting anything poked through you skin into you body hurts” but what I dont usually tell them that the pain a blood test causes is insignificant compared to the joint pain I have on a daily basis.

Anyway me and mum asked about my neck pain too, so the rheumy looked at it and made me do a few movement tests which showed her how limited my motion was. She didnt really say what was wrong with it but she is referring me to a physio and I need another scan (either MRI or bone scan) :/ Because the rheumy didnt give any helpful tips on how to control the pain mum went out and bought me this.

image

Ive been wearing it all day and it’s really comfortable and warm so fingers crossed it will help my neck.

I asked the rheumy if she had any idea of what I have and her answer was “you have some signs of inflammatory arthritis but your bone scans show that you are still growing so it is hard to interpret it” I thought that this answer was very helpful, NOT! So we are basically watching and waiting. Ive waited four years now and I really would like an answer but I know now that I dont have Lupus so that is good.

Anyway because I took the day off college I decided to go and get my prescription of seretide which has been waiting at the GP surgery for a week now. And here she is:

image

This little beauty is keeping the inflammation down in my lungs but to be honest she isnt doing very well and I’m really wanting to switch onto symbicort. Originally my asthma nurse wanted to put me on seretide 125 but that only comes as an aerosol and my hand joints hate aerosols so I was put on seretide 100 instead. To be honest I dont know if that extra 50mg of steroid would have helped me but nevermind, there isnt anything I can do about it.

Feeling blue

So I’m not feeling myself, like physically I’m doing okay but mentally I am exhausted. I always get really stressed out before my rheumy appointments and yes I do have another week to wait but I am already stressed.

I’m really hoping that this time I will get a diagnosis, it’s really hard not having a name for what your dealing with.

Right at this minute my joints are okay, my neck must be about a 6 on the pain scale, my hip a 5 and my fingers a 6 also. So overall Im doing a lot better than i have been. Last night I didnt get much sleep because of my neck so I am absolutely shattered today. At the moment pred is looking really appetising. I keep thinking that I only have one more week to wait and then I will be sorted but it’s just hit me, a week of waiting for a diagnosis is nothing compared to the rest of my life with juvenile arthritis. So now I’m hoping that it is all because of stress, so if I remove the stress I remove the pain. Simple… I wish.

And what is even worse is that when someone asks what wrong, there is no point telling them because they are too young for arthritis. So there we are, my fairly short rant explaining how I and probably other young people with arthritis feel.