Hello

Toots

Hello all, I hope you are all as well as your afflictions allow you to be!

I may be being a little previous in posting, but if anyone will understand, it's you lovely people here - I've been lurking for a while lol.

I'm waiting for my referral appointment with rheumatologist to come through, so at the moment have not had a firm diagnosis - hence my 'jumping the gun' thoughts. My gp seems to be of the opinion that it's RA, but all bloods have come back 'normal' - slight elevation in inflammatory markers, but nothing to make anyone sit up and take notice.

I went to doc a week after developing swelling and awful pain at the top of my right kneecap. He diagnoses bursitis, gave me anti-inflams and told me to return in 2 weeks if no better and they would consider steroid injection. Two weeks later I went back, saw different doc, who advised me to keep taking anti-inflams, prescribed co-codamol for pain relief and organised an xray of knee.

Couple of weeks later, back to doc, whole knee is swollen and stiff and blimey so sore. Xray shows mild arthritis. Doc I saw then gave me steroid injection into knee joint (nothing could have prepared me for that, awful). Within half an hour I could barely walk and I stayed that way for nearly 2 weeks. I was told it was probably steroid flare.

Back to gp last week - stiff and burning in my elbow joints, right knee still causing me major grief, left knee sympathising but no swelling, synovial inflammation (docs words) at both ankle bones, horrendous to walk on, toes sore, hands so sore I can barely hold my toothbrush in the morning although they do ease off later in the day. Slight fever which seems to come and go, although I believe that could equally be the Naproxen. Doc ordered bloods and decided on referral regardless to rheumatologist.
Final blood results back today, and everything 'normal'.

I just checked with the hospital, and for urgent referrals it takes 4 weeks to get an appointment, for general referrals it's 12 weeks. Guess which category I fall into according to the doc's office records?

I guess I wanted to rant, as much as anything else, I've been over emotional and I think a big part of it is utter frustration. I'm finding it difficult not to mention painful, just getting around my tiny flat. I haven't been at work for a month and don't qualify for sick pay. Finding out today that I'm going to have to wait another 3 months before we can potentially progress from here has really got to me. I have only been taking the co-codamol when I feel I absolutely have to - usually at night, unable to sleep for pain - because a) they're addictive and b) they make me spaced out lol. I'm now thinking though, if I'm going to have such a long wait, do I dope myself up every day so that I can get back to work? Do I risk causing my joints damage by 'getting back to normal'? I know these questions probably can't be answered really, since we don't know what my actual problem is, but they are the things that I need to get off my chest.

I've just realised that this has probably turned into a huge long first post, so for that I apologise! Thanks for listening x

Suzylou

hi

Am sorry for your situation, it sounds very similar to mine, i was diagnosed with 'frozen shoulders' from 17 yrs old, then my feet were hurting - which was obviously my shoes i was wearing according to doctor, then random swelling in my fingers, but bloods came back as negative. It was my 25 birthday i was confirmed as suffering from RA.

I know it can be stressful and a long process so keep positive and hope you get more answers at your next appointment. Here is you want to chat.

DebbieT

Hello & welcome,

I lurked for a while b4 posting too

You do sound cheesed off & I'm not surprised. Pain & losing sleep really does take a toll on our temper & rational thinking ... Well it does mine :oops:

I have Osteoarthritis, Psoriatic Arthritis (autoimmune type) & a pain disorder Fibromyalgia.

It does sound more like an autoimmune flare than not!! The temperature, joint heat, pain jumping around etc So I think ure GP is doing the right thing by you so far.

I personally don't get on well with cocodamol & take Slow Release Tramadol instead as it doesn't cause any side effects or 'spaced out' feelings for me. I also take an anti inflammatory & paracetamol daily.

I don't think that much extra damage will probably occur in the space of a few months so I wouldn't worry too much. Also do remember that if it is RA then the meds used will usually take a while to get into ure system & start working ... All things considered I think ure GP has moved quite quickly, pain & lack of decent sleep will make it feel much longer!!

I'd personally continue with the pain meds, or ask for a different type you can tolerate better, try & rest wen ure body calls for it & also see if you can find some ways of releasing stress ... Stress build up is unhelpful & can make you feel worse.

Take care. Keep us posted.x

hileena111

Hi
I'm just popping on to say welcome....I can't be much help to you...sorry. I've got OA but hopefully you'll sat, post and will get some answers from others.

Love
Hileena

Boomer13

Hi and sorry to read of your troubles.....

I agree you seem to be getting good treatment from your GP & got your rheum referral promptly. Sorry you still have to wait, though. I'd hate to tell you that I waited a year to get in with mine I have PsA, but was initially diagnosed variously with RA, fibro, MS and a few others. It seems easy now but it took a very long time and the worry is excruciating. Make sure you come here to chat, it does help

While your joints are inflamed it's best not to go on like normal; go easy on them, swimming is good if you can, but do try to rest lots and just do gentle exercise. Your body is working really hard dealing with inflammation and pushing yourself hard will not help. That being said, you want to keep going as much as you can and I'd sure consult your doctor about how much is appropriate, maybe they will suggest physio for you?

It can be a big adjustment, listening to your body and pain levels if you normally just did whatever you wanted, so be patient (you're likely sick of hearing that already too).

I was 'spaced out' with codeine too, but I have got used to it. Trying to remember, but I think this took a few weeks. Now I find the pain more of a problem than the mental effects of the drugs. For me, like DebbieT, I found Tramadol slow release works best. Toughing out the pain will exhaust you and is generally not a good idea, if you are thinking of that. The addiction issue hasn't been a problem; rarely, when I've been able to reduce dosages, I've had no ill effects. Sleeping well is very important so make certain your pain is not keeping you from that.

Take care, and the 3 months will go by quick,
Anna

Toots

Oh thank you all so much. I knew you were a friendly forum but I didn't expect such a lovely prompt welcome x

Thank you Suzylou, I hope you're having a good spell right now. It's good to know there is somewhere to come offload - my OH is working away in Canada right now and my parents are pensioners who are stressing about me lol, so I tend to put a brave face on in their presence.

Hi DebbieT, thanks for your post. I guess you're probably right, lack of sleep getting to me and just frustration at not being able to just go DO stuff. Plus the money side of things is stressing me out. I hope you're well just now. Like a lot of people I have had a good look online (reputable sites only) to try to find out as much as I can and I can understand why doc is concerned re inflammatory arthritis, the symptoms certainly seem to fit, although I know fine well that doesn't necessarily mean anything.

Thanks Hileena, it's nice to know there are such friendly people around. Hope you are well x

Anna thanks so much for posting, I appreciate it. Very informative post, I guess I need to have a think about a lot of things. Regardless of the final diagnosis, I know that at the moment if I overdo it, I pay for it, never really thought about the fact my body is using it's energy to deal with the inflammation. Although when I say overdo it, it doesn't seem to involve doing an awful lot. I consciously make sure I'm up and hobbling around regularly, since it's been almost 3 months since this started, I have had a little muscle wastage around my right knee and I know this won't help. I'd asked the doc about that, he said it was mild and he wasn't overly concerned about it. I did ask if there were any exercises I could do to improve, and he told me a couple. Unfortunately they both seem to involve ankle movement, which right now is too sore!! So I guess he feels physio is out. He did tell me at our last meeting when he said he was referring to rheumy dpt that unless my bloods came back RF positive, there was nothing more he could personally do other than keep me supplied with Naproxen.

To be honest, I have been trying to 'tough it out' since I hate the way the cocodamol makes me feel. I did wonder if it might be worth halving them and seeing how that goes.

Thanks for letting me offload folks, I was in a state this afternoon when I found it was going to be another 3 months, but from what you've all said, it seems like gp has been on the ball and many of you have waited much much longer. Deep breath, onwards and all that ....

xxx

Boomer13

Toots wrote:

Although when I say overdo it, it doesn't seem to involve doing an awful lot.

Well, that seems to describe mostly everyone here

I've halved codeine tablets before. If the tablet is scored, then it is safe to split. The time release medications are definitely not safe to halve. Sorry if you knew this already, just thought it was worth mentioning for safety-sake.

Best wishes,
Anna

Toots

Lol, yes I've gathered that energy is a valuable commodity around here!

The tablets I have are indeed scored, which is what made me think about halving them, but I didn't know about the time release ones so I'll store that information away for potential future use, thank you for telling me x

My kitty (who has been extraordinarily sweet with me recently) has one of my arms pinned to the bed as she gets herself snuggled in as close as she can, purring loudly, so I'm taking that as a sign I should try to get some sleep too.

Hoping you all have a good nights rest. Thank you to you all, I feel a little calmer tonight after your kind posts x

barbara12

Hello Toots and a warm welcome from me
You rant away we dont mind...its good to get it all out..I am a great believer in talking..and that can be much easier with us, than family..
Sorry I wont be much help has I have OA.
But I do hope you get some answers very soon x

Toots

Thank you for the welcome Barbara, so glad to have found somewhere I can talk x Have a good day!

dreamdaisy

Hello, it's nice to meet you and congratulations on finding the courage to jump in!

If you've been following the forum for a while then I guess you will realise that this time delay is almost par for the course. An inflammatory arthritis can be notoriously difficult to diagnose (especially the sero-negative types) but the good news is that your GP has been doing the right things, you are in the system and an appointment will turn up. I hope you are keeping your diary of what's what, what helps and aggravates etc etc - I'm sure you know the drill.

Taking your pain relief regularly is important, they do ease matters. Waiting until things are bad is rarely helpful because then the dullers won't have that much of an effect. What strength cocos do you have? DD

Toots

Hi dreamdaisy, thanks so much for the welcome!

In reality yes I knew there would be a delay, but seeing that the recommendation should be within 12 weeks, I was hoping the 3 months I've already suffered would qualify Nothing to be done about it though, so will just have to wait wait wait!

I must confess to being a little unsure about how diagnosis goes with sero-negative. Doc said rheumy dpt would possibly ultrasound my hands and feet as these are good indicators, but I don't actually know what they're looking for. Is there something in particular that sets RA damage apart from OA damage? Will a diagnosis be an 'educated guess'?

Not keeping a diary of anything, as this is the first mention I've seen/heard of it. What sort of things should I be recording? I've made notes of the dates of doc appointments I've had so far and treatment/medication/outcome, just to keep track for myself. But if I should be keeping a note of other things, I'd be glad to know.

Sorry, don't mean necessarily to be questioning you personally, all advice very welcome.

The 'cocos' as you call them (almost sounds inviting although makes me think of cocopops lol) are 30/500mg. I guess I see what you mean about leaving taking them till things are bad, they end up with a lot more work to do....

dreamdaisy

The diary idea is a method of recording what is going on so that the rheumatologist has a better all-round picture of you when you meet. Keep brief notes of your tiredness levels, pain levels, whether heat or cold helps to ease the affected joint/s, which activities aggravate matters or help, and the adjustments that you have had to make so far.

You have already learned one useful lesson - the past three months count as naught when it comes to being 'fed' into the system. When my troubles began back in '97 my then GP kept telling me that the swelling in my ever-increasing left knee would sort itself out and go away. After five years it needed surgery because it ended up 27" in circumference. The physios at my local footy team were the ones to refer me to the hospital at the end of the year 2000, I lost another year being bounced gently between orthopaedics and rheumatology, where I learned post-op in early 2002 that it was caused by accumulated (and hardened) synovial fluid thanks to having an inflammatory arthritis. Belive you me, you are being well-looked after by your GP. It may be worth, when you get the letter through from the hospital, contacting the rheumatology department to say that you would be willling to take any cancelled appointment that might crop up; I am very fortunate in that I live a five minute drive from mine and can get there in a very short time so I kinda assume that that applies to everyone. :oops: DD

Boomer13

Kitty therapy! This is very good for you...

Toots wrote:

My kitty (who has been extraordinarily sweet with me recently) has one of my arms pinned to the bed as she gets herself snuggled in as close as she can, purring loudly, so I'm taking that as a sign I should try to get some sleep too.

My cat does this too and it sets my joints up like cement but it all for her comfort and she's such good company. No matter how bad the day is she is always there and makes me smile. That's got to be good for your spirit at least

Anna

Toots

dreamdaisy wrote:

The diary idea is a method of recording what is going on so that the rheumatologist has a better all-round picture of you when you meet.

Makes perfect sense, thank you DD for this handy heads-up.

What a terrible time you had getting diagnosed, unbelievable! I guess I should quit whining about a little 3 month wait! I know folks often say hey, there's always someone worse off than you, but it's not that easy to see past yourself in that moment, is it? While the rheumy dpt here is across the city, I know my Dad will drive me since I don't trust myself to do so, I'll make a note to call them and let them know I'll take a last-minute appt, thank you again for the tip.

Hope you are having a good spell x

Toots

Boomer13 wrote:

Kitty therapy! This is very good for you...

I've always sworn by it, but especially this last while! I swear she knows something's up. It's funny, because while she's super cuddly to me just now (and it's unlike her), my other kitty seems to be avoiding me. We can quite clearly pin this down to the last couple of months, so obviously they're dealing with it in their own different ways. Well, so I believe anyhow lol. But you're right, with a kitty curled up close of her own choice, it's hard not to smile.

Enjoy your kitty snuggles Anna! x

dreamdaisy

The fact that others may be worse off than you is totally irrelevant - whether it's one affected joint or many more matters not, it's all an outrage, mahoosively unfair and just should NOT be happening to ME. End of. DD (who is feeling that very keenly today )

stickywicket

Toots wrote:

I know folks often say hey, there's always someone worse off than you, but it's not that easy to see past yourself in that moment, is it?

Wise words, Toots. When we're really up against it the fact that others are having a far harder time is of no relevance whatever. We have to deal with our own problems and our bodies make that abundantly clear :roll: Arthritis has been attempting to teach me the virtue of patience for very many years and I'm still rubbish at it

Toots

dreamdaisy wrote:

The fact that others may be worse off than you is totally irrelevant

Exactly how I've been feeling but too polite to say out loud lol. Glad it's not just me!

Toots

stickywicket wrote:

Arthritis has been attempting to teach me the virtue of patience for very many years and I'm still rubbish at it

Hi stickywicket! Yeah, patience is a virtue right enough. I never claimed to be virtuous though haha!

My ankles have been giving me major grief today and now my left wrist has joined in the fun. Is this normal, this sudden addition of randomly sore joints? It's not swollen at all, but agonising pain in waves, then nothing, even when at rest. Fair takes my breath away. I gave in earlier and took coco and had a nap. Tried a half coco last night and it did precisely nothing - ah well, at least I know now lol.

I have a question for anyone with experience regarding 'overdoing' it ... how do you know? I mean, I'm doing very little right now and am still in pain and lethargic. I'm concerned that lack of exercise is probably not actually helping and wondering if I shouldn't be getting out and about a bit, as sore and slow as it will be. I wander around the flat as much as I can, but even that's an effort and I find it difficult going on the carpets - never knew there were so many lumps and bumps in the floor, but my ankles found that out! I certainly can't live like this for another 3 months. So how would having done too much manifest itself? More pain??

hileena111

Hi Toots
I cant speak about your problems but I find I need to move about a bit......If I sit too long I get sore If I walk too long I get sore.

I was once told about the 60% rule.......once you find out what you can do...no matter how little. Do 60% of that then rest......example.....might not apply to you.....I can just about walk 10 mins outside before I have to stop {with aids} so I'm told don't walk 10 mins, walk 6 mins then rest.
That applies to other things in the house.....find out how long you can do something for then stop at 60% Sorry if that's not explained very well.
In other words.....stop while you think you can still do more.
Personally I find if I'm doing something enjoyable and its taking a lot of energy....I know there will be pay back for it but I'm prepared for that and think its worth it.,
If that "something" is lots of housework and there is payback.....that's not worth it to me

Love
Hileena

dreamdaisy

Taking pain relief is not 'giving in' - it's being sensible. Half a tablet won't do much at all whereas a regular intake will help matters. They won't remove all of the pain but they will dull the sharper edges and that is what counts. You are not used to pain by the sounds of things, it is a normal part of arthritis but learning to live with it is not easy. You will adjust over time (it can be done) and you will learn to shove it into the background (that too can be done) and you will discover your limits but your learning curve is unique to you. DD

hileena111

Hi
Yes I agree with DD
Don't play catch up with the pain.......keep on top of it all the time
Love
Hileena

stickywicket

My experience of RA is that it's normal for it to do what it wants when it wants :roll: Mine started in fingers, moved onto ankles, then wrists, shoulders etc. I was always told to take my joints through their full range of movement every day but very gently during a flare. As for ankles, wear shoes that support your feet well, not slippers/flipflops etc or high heels. Trainers are usually good.

For pain, keep up with the anti-inflamms but, when taking them regularly, you should probably also have a stomach-protecting med such as lansoprazole or omeprazole. Although I'm not a big advocate of paindullers, I don't see the point in half a coco. If you're going to bed it hardly matters if they space you out so surely the prescribed dose is the best one. For daytime use cocos come in lower doses or there are different pain meds that your GP could prescribe. It's a 'horses for courses' business.

You will learn to live with all this. It just takes a bit of getting used to.

Boomer13

Hi again toots;

That all sounds like good advice I wish I'd received instead figuring it out for myself over a long period of time.

Hard isn't it? For myself, I get depressed if I can't move and go for a short walk. I have just discovered that I have to do four short 5 min walks multiple times a day rather than a single 20 min one, for example. My mental health absolutely demands this. The good news is that the physiological effects of multiple short walks is the same as one long one and is much easier on joints. I also feel a different kind of stiffness/pain from being inactive, so know I have to move when I'm feeling that. Sometimes I need to have a hot bath, load up on pain meds, then go. Then there are days when I just can't go at all. This past winter I didn't go for more than two 5min walk-abouts (well, hobble-abouts) a day for 6 mths.

I had a bout of bad attitude a few months ago in a really nasty flare and quit physio and my tai chi class because it was all making me worse. I was very inactive for 6+mths. I didn't do myself any good with this as I am now extremely weak.

What you can do all depends how you are feeling overall. When my PsA is really flaring, I have horrible joint pain but also feel systemically very unwell so tend not to do much. Fighting through fatigue is generally not a good idea. I diarise all things that make me worse/trigger a flare and how long it takes to recover which is helpful for sorting out what I can and can't do. For myself, exercise is a major trigger of flares and is also something I passionately love (walking especially) so it's very easy to overdo. Sometimes, joint pain is immediate, other times I don't know I've overdone it until later. Years into this illness and I still overdo things very easily. I'm finding it very difficult giving up walking but I just don't tolerate it well. Too hard on hips, ankles plus it triggers flares of all joints. It takes time to figure all these things out for yourself. Again, that darn patience thing I'm terrible at that too.

hileena111 wrote:

Personally I find if I'm doing something enjoyable and its taking a lot of energy....I know there will be pay back for it but I'm prepared for that and think its worth it.,
If that "something" is lots of housework and there is payback.....that's not worth it to me

This is so true......Sometimes I'm thrilled I can even do housework, but mostly I avoid the non-essential stuff. It just takes too long to recover, so I use that as my guide. More than a day to recover (unless it's something I really want to do) and I just don't do it.

I'm just going back to physio after a long hiatus, and so far it's not causing more pain. Maybe a physio therapist could help you? I highly recommend getting some help with this so you don't lose muscle mass or hurt your joints by doing too much. I found it really hard to figure this out and have had ups and downs in communication with my physio, but think I'm on the right track finally. I'm also starting something called 'chair yoga' for people with physical limitations and so far it's tolerable in 30 min stints. You may have to be creative to find activities that are tolerable for you My physio is teaching me to do exercises slowly (and yoga) to maximize the benefits to muscle while minimizing joint stress. After seven years with this illness and I'm just learning this :roll: !! The other thing I've just learned is that you only need to do an activity for 10 min to get the endorphin (feel good/pain relief chemical) release in your brain.

Some days you just need to rest, lounge with a cat and not feel guilty about it. Sorry about the length of this.

take care,
Anna

Toots

hileena111 wrote:

Hi Toots
I was once told about the 60% rule.......once you find out what you can do...no matter how little. Do 60% of that then rest......

I totally understand what you're saying about the 60% rule, you made perfect sense. I guess I don't know where my limit is at the moment and I am historically inclined to push myself. Trial and error I think, to figure where the line is. I think my issue right now is because the pain I have keeps changing around joints so it's difficult to know if it's down to something I've done, or just the natural process of it all.

dreamdaisy wrote:

Taking pain relief is not 'giving in' - it's being sensible. Half a tablet won't do much at all whereas a regular intake will help matters. They won't remove all of the pain but they will dull the sharper edges and that is what counts. You are not used to pain by the sounds of things

I know, I really do, that keeping on top of the pain will help, but the huge addiction warning (not to mention constipation side affect haha) has me very cautious. Perhaps I'm being a little foolish to be worrying about this in the grand scheme of things. No, I'm not used to pain at this level, and here was me thinking (and have been told) that I have a high pain threshold. Ha!

stickywicket wrote:

As for ankles, wear shoes that support your feet well, not slippers/flipflops etc or high heels. Trainers are usually good.

I'm a barefoot woman, don't like to wear anything on my feet in the house, and consequently I wear nothing but flats or trainers when out. The issue I have just now is the bursitis-type pockets of swelling at my ankle bones makes it difficult to find anything comfortable! That said, I've been out of the house precisely twice in the last 4 days.

stickywicket wrote:

keep up with the anti-inflamms but, when taking them regularly, you should probably also have a stomach-protecting med

Yeah, first doc gave me Arcoxia but when I started complaining of unusual heartburn etc, different doc switched me to Naproxen with Omeprazole.

stickywicket wrote:

You will learn to live with all this. It just takes a bit of getting used to.

Like any change I suppose! However it does remind me to thank you all for your advice and input, knowing full well that you are all suffering but taking the time to be so helpful.

Boomer13 wrote:

That all sounds like good advice I wish I'd received instead figuring it out for myself over a long period of time.

Hi Anna - yes, as I was just saying, this is such a valuable place to be with folks who actually have experience of it all, rather than generic descriptions of some symptoms. Please don't apologise for the length of your post, it's interesting to me to know about you all and take strength from your experiences. Between my daughter and my parents molly-coddling me I have been feeling very frustrated lol. My parents don't live with me, but they're my parents, worrying over their little (44 yo) girl! My daughter is 17yo and has a pretty sensible head on her shoulders but telling me I'm 'not allowed' to do the hoovering is just plain irritating. That said, it means she does it for me, so win win situation there ha!

I see what you mean about doing several 5 minute walks rather than a longer one, makes perfect sense, a bit like a condensed version of Hileena's 60% rule. Especially since I don't know where 60% is haha, I'd end up walking somewhere and not having the energy to get back!

Sounds to me like you've had a pretty yucky time of it, especially recently but I'm so glad to hear you're back with physio and getting some satisfaction. I hope things aren't too bad for you right now.

I've made the conscious decision that I need to get up and go, only way I'm going to find out where my limit is will be to DO stuff lol. I need to get back to work (financially and probably mentally) and since it's only 2 days a week at the moment I feel like it's ridiculous I"m not there.

Thanks again everyone. Hugs all round! x