Newbie in limbo

clockworkpurple

Hi all,

I posted in the hello forum, and Dreamdaisy suggested I post here. i've copy-pasted my original post below (with some edits for clarity) as it's quite long...any advice gratefully received! Knees are worse today than ever...silly knees!

I hope it's OK to post here without a definite diagnosis. I'm a 33-year-old woman, and my GP suspects I have some kind of inflammatory arthritis. I've had a dodgy knee for years, but was fobbed off by a previous GP, and the pain came and went, so I didn't do anything about it.

But about 6 weeks ago the pain came back, joined by the opposite ankle, aching all over my shoulders and, recently, the remaining knee and ankle. (Oh and, as of yesterday, my fingers and wrists too.) It's very painful to walk (/limp) and stairs are a nightmare. The pain is pretty much constant and often keeps me awake at night.

I've been to the GP (new GP) and have had lots of blood tests, the only one of which that's come back abnormal being the plasma viscosity, which I've just found out is elevated. Have also had an x-ray on one knee and ankle, which showed inflammation on my ankle.

I'm going back to the docs on Monday, and they'll hopefully refer me. I'm taking Colchicine pills and topical capsaicin cream, neither of which seem to be doing much. (I can't tolerate ibuprofen pills, and the gel did nothing.)

I guess I'm posting here because I'm pretty scared and freaked out by this all...I mean a few months ago I was fine and, whilst a bit of a couch potato, I enjoyed swimming in the mornings before work. I'd just got a bicycle too, but can't do either of those now as it's just too painful.

But I've also got some specific questions, if anyone can help:

* Is there anything I can do about the pain before I get a diagnosis?
* How long does a referral take (I'm in Bristol if that helps)?
* Should I avoid exercise/excessive movement or try and push myself even though it hurts?
* Does yoga etc. help?
* How do I get comfortable in bed??
* Any other advice for a scared young-ish person, who's used to being very independent?

Thanks to anyone who read this far! This seems like a great community and reading your posts has given me more hope than I've had in a few weeks (although what some of you go through freaks me out too!).

Dakky

clockworkpurple wrote:

Hi all,

I posted in the hello forum, and Dreamdaisy suggested I post here. i've copy-pasted my original post below (with some edits for clarity) as it's quite long...any advice gratefully received! Knees are worse today than ever...silly knees!

I hope it's OK to post here without a definite diagnosis. I'm a 33-year-old woman, and my GP suspects I have some kind of inflammatory arthritis. I've had a dodgy knee for years, but was fobbed off by a previous GP, and the pain came and went, so I didn't do anything about it.

But about 6 weeks ago the pain came back, joined by the opposite ankle, aching all over my shoulders and, recently, the remaining knee and ankle. (Oh and, as of yesterday, my fingers and wrists too.) It's very painful to walk (/limp) and stairs are a nightmare. The pain is pretty much constant and often keeps me awake at night.

I've been to the GP (new GP) and have had lots of blood tests, the only one of which that's come back abnormal being the plasma viscosity, which I've just found out is elevated. Have also had an x-ray on one knee and ankle, which showed inflammation on my ankle.

I'm going back to the docs on Monday, and they'll hopefully refer me. I'm taking Colchicine pills and topical capsaicin cream, neither of which seem to be doing much. (I can't tolerate ibuprofen pills, and the gel did nothing.)

I guess I'm posting here because I'm pretty scared and freaked out by this all...I mean a few months ago I was fine and, whilst a bit of a couch potato, I enjoyed swimming in the mornings before work. I'd just got a bicycle too, but can't do either of those now as it's just too painful.

But I've also got some specific questions, if anyone can help:

* Is there anything I can do about the pain before I get a diagnosis?
* How long does a referral take (I'm in Bristol if that helps)?
* Should I avoid exercise/excessive movement or try and push myself even though it hurts?
* Does yoga etc. help?
* How do I get comfortable in bed??
* Any other advice for a scared young-ish person, who's used to being very independent?

Thanks to anyone who read this far! This seems like a great community and reading your posts has given me more hope than I've had in a few weeks (although what some of you go through freaks me out too!).

Hi,

I'm in a similar boat to you. My pain started in my knees about three months ago, but no previous joint problems. This has now spread to every joint in my body.

My bloods came back normal, and I had an x-ray on my left knee when this all started, that too came back normal. My doctor thinks it's something post-viral and is hoping I will push through it.

Just this week I convinced my doctor to set me up an appointment with a rhumey* doctor, the doctor said this can take a long time, not sure if that's just because of were I live (Dundee) or that is normal, so something to take into consideration.

Regarding exercise, I would try and get an appointment with a physio from your doctor if that's possible, so they can advise you on not overdoing things. Previously my work was plenty exercise, I've now lost that job due to no longer being able to walk, well I can manage from bed to bathroom, but that's now about it. So please don't overdo things, my job forced me to use the joints that were causing the biggest problems, when I should have been taking it easy, of course I didn't expect it to make me bedridden though, lol.

Sleeping, it's only been about six or seven weeks since it hit my shoulders, but I can no longer sleep on my sides, as this will leave my shoulders aching more than they already are, and seems to leave me with tendon impingement. This may not be a problem for you though. I would recommend for sleeping on your sides, that you have a pillow between your knees as to cushion the weight of your legs against each other, and that you don't sleep with your arm tucked into the side you are sleeping on, have that arm free so you don't have your torso weight resting on your shoulder. Also make sure your head is comfortably supported by a pillow. Sleeping on your front with your arms above you will also save your shoulders, this is if your lower back can take that position all night, mines now can't...meh.

Pain killers prescribed by the doctor are only giving me very mild relief, so I can't really help their.

Regarding advice, I too am like you, scared. I don't know whats happening to me. I'm now literally disabled, I'm praying the doctor is right and this is going to pass through. I've also only just turned forty the other day and was fit as a fiddle before this, no joint problems in my family either.You just have to hope for the best and try think positive, it's all you can really do, that and if it is something that they get you diagnosed early, so they can get on top of it.

I'm sorry this post wasn't more positive for you, but I really wish you the best and hope you make a full recovery.

barbara12

Hello and a warm welcome to the forum
It is so normal to be freaked out has you say, I remember it well 4 years ago now,
It took me around 5weeks to see a consultant and then all the xrays and bloods
I have OA in multiple joints,and have had a THR 3 months a go, you learn lots of ways to get comfy in bed one being a body pillow..you can put it wherever it helps..I have part under my shoulder and between my legs to take the weigh off them
Pain wise you could be refer to a pain clinic, I also take VitD it is found that many are deficient in this, but please check with your GP..its help you absorb calcium.
I sometime find that paracetamol works just has well as cocodamols but always be careful you dont take to much.
It will help you to talk about your worry's, it is much easier than talking to family...and its good to get your feeling out.
You take care x

clockworkpurple

Thanks guys. Dakky, your experience does sound v similar to mine.

Will definitely ask about a physio as I want to stay as mobile as possible without injuring myself. I sit at a desk all day for work, which in a way is a good thing, but it does mean I get stiff if I forget to get up for a wander every now and then.

I don't think I could sleep on my front (I'm, er, rather well endowed... ), but a body pillow sounds like a good idea Barbara, and they seem to be half price in Argos at the moment

I agree with staying positive, Dakky, but I'm also very much a realist...I think the way I deal with things is just to go "well, this is how it is, you can't change it, so get on with it!" If I'm lucky this could not be a lifetime thing, but I have to accept that it might be, I guess.

it's great to have this forum; my friends don't really seem to understand how difficult a time this is for me (it probably doesn't help that I'm not good at showing weakness so am very much putting on a brave face), and I don't want to worry my parents and brothers. I've not got a significant other, so it's just me and my cat without this forum! And he's not much good for sympathy... :roll:

Toots

Hi clockworkpurple, I'm glad you found the forum (although unhappy you've had to do so!). I'm a relative newbie myself but have always found everyone here friendly and helpful.

I have noticed that there seems to be a lot of difference in waiting times around the country so it's difficult to say how quickly you may get an appointment with a rheumatologist. I should perhaps say how slowly actually! NHS guidelines state that you should be receiving consultant-led treatment within 18 weeks of referral, so it may be a long haul. I've just received confirmation of my appointment - I've waited 12 weeks for this (which I think is a target waiting period) and have a further 6 weeks until my actual appointment, so they're within target time :roll:

I have been lucky in that my gp has prescribed medication in the meantime - it's doing nothing for me right now, but it's likely that it means I've got a jump-start on DMARDs (disease-modifying anti-rheumatic drugs), and they have to be built up in your system and I understand it can take up to 6 months to see if they will work. I also was prescribed anti-inflammatories (Naproxen) and a tummy-protector to go with these (Omepraxole). I don't honestly think the anti-inflammatories are doing anything for me either, but can't say my doctor hasn't been thorough. I was also prescribed cocodamol for the pain, but these give me a really sore stomach!

I believe the 'plasma viscosity' you refer to is commonly known as ESR (erythrocyte sedimentation rate) and is used to determine the level of inflammation in your body. However, it has also been known to be a bit unreliable, with many on the forum not having elevated ESR readings but still having inflammation. CRP (C-reactive protein) is apparently a better indicator, but my understanding is that this is a more expensive test, so probably not done by your gp ;-)

You are likely to receive a letter from the hospital telling you that you're on a waiting list for an appointment. If the timescale they give you is target (ie 12 weeks) it might be worth having another chat with your gp to see if he can provide you with any other treatment, since you may be waiting for some time. Due to my elevated ESR level, my gp was able to give me a 'cover-all' steroid. This hasn't 'cured' me, but I have fewer aching joints since getting this, so it's always worth asking about it.

Have a good wander around the forum, there are a lot of really helpful posts. The one thing I did learn, really quickly, was not to hit google too hard and to only stick to reliable sources such as Arthritis Care and NHS.

Oh, and I dish out hugs regulary ... here's one to be going on with .. Hug! x

clockworkpurple

Thanks Toots. The Colchicine I've got doesn't seem to be doing anything, but then my serum uric acid came back negative so that doesn't surprise me. Will see what else I can get from the GP on Monday!

I struggle with both NSAIDs and co-codamol (for opposite reasons! :shock: ) cos of my IBS, so need a solution to that too!

Thanks for giving me an idea of waiting times, and the steroid idea is a good one.

Google's so hard to avoid though, and I'm a Google queen!

Woah, just had my first massive wave of fatigue...could barely look at the computer! Luckily my boss and workmates are completely awesome so I went and had a lie down on the sofa on the staff room. Would've been nice to fall asleep...

Roll on the weekend, although my mum is visiting and I'm worried that she'll stress when she sees how much I'm limping. I was OK when i saw her a month ago...

dreamdaisy

There are some immuno-arthritis people on here who also have IBS - I think all these things are on the same spectrum? I am fortunate in that so far (touch wood) my insides have been OK but who knows how long that will last? I am hopeful that my childhood eczema and asthma (and now the PsA) are enough on that front.

Sleeping on my front is also a total no-no (40G ) but mainly because of the neck position, how can one sleep with one's neck turned at a 45 degree position? I can't. Regarding work it may be best to set a subtle alarm for every twenty minutes or so so that you have to get up and move around; yes, it hurts but it is necessary. I can no longer turn naturally in my sleep so pain wakes me, hurts more as I move, then recedes until the next spell of waking. This is one reason why I am reluctant to take the stronger meds - not moving for ten hours or more = total hell the next morning, I prefer the shorter doses of hell through the night.

I like your realistic approach, you have hit the nail bang on the head but it can take time to fully adjust, which is where we come in useful. Many of us have been there and done that, read the book, seen the film and regularly wear the Tshirt. It's not easy.

Friends and family cannot understand - with the best will in the world unless one has experienced things then you cannot begin to comprehend matters. Arthritis is ubiquitous, associated with the older members of society, and very mis-understood. I thought I was alone with this malarkey until I found the forum, but I am glad that I was a good few years in before I joined; that gave me some breadth and depth of experience of coping. DD

barbara12

I don't think I could sleep on my front (I'm, er, rather well endowed... ), but a body pillow sounds like a good idea Barbara, and they seem to be half price in Argos at the moment
Ooh thanks for this my friend is looking to buy one..

clockworkpurple

Yeah, I get a bit of Eczema too, and have PCOS to round it all off!

An alarm to remind me to move sounds like a good thing to try, thanks! Things definitely get easier as the day goes on, and then you wake up the next morning to climb the hill again! :roll:

Again, thanks everyone for the support, it's really keeping me going right now.

One more thing, where does the phrase "pocket duties" come from? I get the meaning and think it's lovely, but it's not something I've heard before...

dreamdaisy

It was a phrase coined by a member (Skezier) who lived on her own. It means that those who have to attend appointments alone could ask for forum support and the forum would rally round; we would jump into her pockets, bringing snacks etc, to lend 'virtual' support. Believe you me, it helps. DD

Starburst

Welcome Clockwork. It sounds like you've had some good advice so far, so I'm not sure how much I can add. Although, with regards to movement, this is the advice from my physiotherapist who has specialised in rheumatology for many years; generally the rule is to rest swollen, flared joints (as in, no heavy exercise) but at the same point, it is important to keep moving e.g. very gentle stretches to avoid a.) stiffness of the affected joints and b.) causing pain/weakness in other joints and muscles.

The only way I can sleep in bed is with a foam mattress topper on my bed. I also have a very good mattress which has made things a bit more comfy. It wasn't super cheap (the memory foam topper) but if you scour the internet, you can find decent deals. I cannot sleep without it. I also have a memory foam pillow which I love.

If you have any other questions or would like advice, support or anything, you know where we are. Don't be alone.

Take good care.

clockworkpurple

Thanks Starburst.

Back to the GP this morning...she admitted she doesn't know what's wrong with me (which I much prefer to fobbing off) and has put in an urgent referral to rheumatology. Pretty wiped out after the weekend...my mum visited, which was lovely, but I pushed myself as I don't want her to know how hard this is. Don't think I'll offer to sleep on the airbed next time either! :shock:

GP has prescribed enteric-coated naproxen (250mg), which hopefully won't aggravate the IBS.

Got a busy week ahead (lots of plans made before this all started) so just gotta try and get through...

Mat48

Hello Clockworkpurple - so sorry you are going through all this. As others have said everything wise to you I won't say much apart from good luck. Your symptoms bring back many memories of how my RA started three years ago but it has never been this bad again since and I don't think it ever will (here's hoping anyhow ). If you have visibly swollen joints, especially the knuckles and fingers, then I recommend you take photos because there's nothing more frustrating than having a good day when your rheumy apt arrives :roll: Mat x

dibdab

Hello and welcome, but sorry you had to find us.

I'd endorse the memory foam mattress topper- for me it's made the difference between being able to nod off and just feeling hugely uncomfortable- though I love holidays I'm always longing for my own bed within 3 days .

I'd suggest keeping a diary of symptoms to share when your rheumy appointment comes through- it might reveal some patterns that will inform a diagnosis. My RA started as Palindromic arthritis- it migrated around the body from joint to joint, and it wasn't till I got to the GP with a swollen and tender wrist and hand that she finally referred me to a rheumy. My RA is seronegative- it doesn't show in the blood markers- there are so many different kinds, and I guess a label is just an indication of what we live with.

Being stiff in a morning is one of the inflammatory arthritis indicators so the rheumy will ask you about how long it lasts-so again the diary might help form a complete picture for diagnosis.

Deb x