Awaiting CTD results

Kate82x

Hi! After lurking in the background reading everyone else’s posts for weeks I felt it was time to say hello.
I’m 35 & received a diagnosis of arthritis from my GP in December following an X-ray that I had done for a knee complaint. I’m still waiting to find out exactly which type of arthritis I have.

I’d noticed some clicking sounds from my knee for months but no pain, only really when I walked upstairs.
I thought it would sort it’s self out in time so just ignored it.
Then in December it became extremely painful & swollen, prompting me to visit my GP. He also referred me to musculoskeletal.
An unrelated blood test I had done at this time also showed reduced kidney function.

Within a month I began to get pain & the clicking in my other knee along with some nasty ankle pain. Although swelling in the 3 joints was minimal to none.
I went back to my GP, saw a different doctor & she sent me off for a blood test to check my kidney function & to test for RF.
It occurred to me at this point that the swellings on my wrists I’d been having for 18 months may be related. I’d been told by a nurse after the first one that it was a ganglion so when I started getting them on the other wrist a year later I never really gave it much thought. I’ve also suffered with fatigue for around a year. Getting home from work & often needing to lay down or go up to bed excessively early. Rarely spending an evening with my poor OH.
Blood results showed my kidneys had moved back into the normal range of functioning & RF was negative along with inflammatory markers & gout.

A month later, I still hadn’t received any kind of referral through & my pain had progressed to my neck & right hip.
Whatever this is it seems to be moving quickly.
Feeling quite scared at this point I returned to my GP at the start of this week & saw yet another Dr who sent me for another blood test for CTD screening & vitamin D deficiency.

I heard from the musculoskeletal this week to offer me a cancellation which I snapped up & had my first session with a physio yesterday.
I was informed by the Drs receptionist the day before that my latest bloods were back & that I’d need to discuss the results with my GP.
As I informed her that my appointment with the physio was the following day she assured me that they would be able to view the blood result there. Unfortunately that wasn’t the case.

So that brings me to today.
I’ve tried to be relaxed about waiting for the latest blood results but not knowing what is happening is terrifying me.
I noticed last night that my little finger was locking, I literally feel that with every day that passes brings a new pain or concern.

Apologies for the super long intro.

[Deleted User]

Hi Kate82x,

Welcome to the forum, you seem to be in pain in lots of places, it's quite frightening at the start of an arthritic condition. Try not to get too wound up by it all, you've got a dr appointment coming soon which sounds like it will shed some light on your situation, and show the way forward.

For help right now here's a link to pain management
https://www.arthritiscare.org.uk/assets/000/001/888/Managing_Pain_2017_Update_original.pdf?1510587710

You might not have heard of tens machines - your physio may have one you can borrow, indeed they use them themselves

Keep posting, ask anything you want and let us know how you get on

Take care
Yvonne x

barbara12

Hello Kate82x and a warm welcome form me..I feel for you being so young..dont worry about the long post it good to talk about things...
I have been on this forum for quite a few years now and one of the first things i learned was to ask questions , and be heard when it comes to appointments .I know the NHS is busy bit it can be very useful to ring the secretary's , they have always been a big help to me..one good tip keep a list of stiffness and pain..it will help at your appoitment
I found it interesting that you had results come back with low kidney function, I have the same only mine were tested again and still low..so I am glad to hear yours aren't..
The waiting game is awful Arthritis is so complex there are a couple of hundred different types so it can take a while ..good luck with it all

dreamdaisy

Hello, it's nice to finally meet you. As you may have read on here, if your GP has diagnosed arthritis then it is more than likely to be osteo because they do not deal with the other kinds. When one joint is experiencing trouble we automatically (and unconsciously) change the way we hold ourselves, move, do things, thus placing other joints out of kilter and adding to the strain, hence things appearing to 'spread'. That is a completely natural response, who normally likes being in constant pain? Also the fewer the affected areas the more the pain stands out, making it harder to deal with. Our bodies also begin to work harder against the pain hence the tiredness, plus pain can disturb our sleep (or certainly affect its quality).

There are many kinds of auto-immune inflammatory arthritis so it sounds as though your GP is being thorough in trying to eliminate them but, although they are far better informed than they used to be, they still do not know enough about the subject. If there is a history of auto-immune troubles in your family background it may be worth asking for a referral to rheumatology for clarification one way or the other. OA is the most common form of arthritis in the UK, of the ten million or so affected the majority have OA.

I am sorry I cannot be of more help: I hope you find some answers sooner rather than later. DD

Kate82x

Hi.
Thank you for your responses.
I’ve finally had a diagnosis of reactive arthritis.
I feel that this makes sense for me & feel relieved that I finally have a diagnosis after lots of different opinions.
I’ll be taking naproxen & Omeprazole to start with & if I don’t have an improvement then a second steroid injection as I responded very well to the first, if the symptoms persist then it’ll be methotrexate.
Hoping the anti inflammatories put it to bed so the further medication won’t be necessary.
Fingers crossed.

grid

Hi Kate

hope you are getting better

i am in the same situation as yourself. i have been diagnosed with Reactive arthritis, i have had this almost a year now. i can say that i am not in extreme pain like some people are on here.
its a waiting game at the moment, in hope that it will go.

they have found OA in my hips so they are painful at the moment, but they have said its quite small damage, nothing thatshould cause pain but its prbably the Reactive adding to it.

as for drugs they have recommeded Paracetamol in the morning and thats it so they must think there s little wrong with me

did they tell you how you had reactive? was its an illness that caused it?

Dave

Kate82x

Hi Dave

The same as you, I’m not in extreme pain but will tend to have periods that it bothers me more.
I have had shoulder pain this last week which is new for me & surprising considering the naproxen so I’m not sure how effective that is?
I think maybe the steroid injection I had previously is well & truly out of my system now.

I think it just depends on your rheumatologist what course of action they feel is best rather than thinking there’s little wrong.

They found OA in your hips, did you have X-rays?

She just took all my history, done an examination & that was it really.
I’d had a bout of slap cheek in March that effected my joints quite severely so I’m not sure if she believed it was because of this or something previous.
I’ve had repeated throat infections since December when I began the joint trouble so I’m not sure if that’s related?

anna1979

Hi Kate

I too have Reactive Arthritis, I stared in February and feel like I’m finally on the mend after 4 difficult and painful months although I’m still struggling to return to normal walking and driving because of the pain in my knees and hips.

I saw the rheumatologist again on Thursday and he gave me a second steroid injection and said all my bloods were fine (I too had a CTD/RF screen) which is really reassuring and I feel really lucky that this isn’t going to be a lifelong thing. I felt though, that although he was very kind he was quite dismissive of any questions I asked and just kept saying ‘your bloods are fine’ like I was making a fuss. When I asked him if my Carpel Tunnel symptoms will fade away through recovery (it has caused me to drop things so a fair question I thought!) he started talking to me like I was a child! I have read an article which suggests that rheumatologists can forget when dealing with ReA instead of the difficulties of RA, that it still has a big impact on the patient and needs to be treated with sensitivity. He even told me that if I’m well in 3 months I needed bother to go to my follow up just to be discharged!!

I too developed this from a cold/sinus infection in Jan/Feb but I also had Cryptosporidium in Aug after a holiday, which the rheumy discounted the first time I saw him but included last time. So although the NHS website doesn’t include these things in the list of causes they must be a factor. I too have shoulder pain and one was swollen for a while so that will be caused by your ReA. I’ve also had jaw pain, neck pain and pain in my collar bone on and off.

Sorry for long rant!! I hope you continue to improve soon and also have clear CTD screens.

Anna


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grid

Hi kate/Anna

Good to hear you are on the mend Anna. are you gradually getting better, or is it slowly getting better.
i have had a steriod injection earlier april and looks like its wearing off. Pain still in hip and Fingers and slight pain in toes. no pain in shoulders like you both having. Pain in the hip is the worst for me, i cannot train or anythin at the moment and i have to wait to see a Physio before doing anything.
i am not quite sure if you both felt like you have something worst than ReA such as RA! they say my bloods dont show it but i have read that the bloods can show negative and still have RA. the symtoms of RA is that you get pain both sides of the body, which is what i have, pain in both hands the same time, pain in hips the same time.
but the Rhuemy dismissed it as they said i been reading to much in Google but i got the information from the NHS arthritis information.

Dave