All day pain

Star2001

Hello again. I posted a short while ago about pain but no inflammation. I am still waiting to be called back for my results and discussion regarding treatment. My heads in a spin as I have reached the point of thinking "what if they don't give me anything?". I was called for a hand scan and the sonographer said that there was no evidence of damage. This, along with the fact that the doctor at the hospital said there was no sign of inflammation is getting me down. My bloods were positive for RFactor, will that always be the case now and are they likely still to treat me? I was already told it was RA and I know now that the extra tests are all routine before treatment is started but I just feel so down. My hands are so painful and the painkillers just aren't making a real difference. I just can't imagine the pain going away and I feel so guilty because I know that people suffer far more than this. I am trying to be so upbeat with family and friends but I feel like having a real good weep. Just wish I had an appointment date. Does the pain usually last all day? With RA and OA?

dreamdaisy

Have a real good weep, it helps. One of the most difficult things to get used to is living with some degree of pain. All of us are different in how we feel the pain, how we react to it, how we deal with it, how we adjust to it, how we cope with it. It's not easy Star, far from it. And don't be afraid to tell us how miserable it is. I have no handy tips or advice but I do know what it is like. Any degree of constant pain is untenable. Appreciate the better days when they turn up and don't spare yourself the pain relief when times are rough. DD

valval

a lot of us live with constant pain but when they get you on some meds things will be better at lest your bloods show something mine only showed inflimation and no swelling when went to docs. but they will treat you and it will get better try to read or play games if you can distract your mind it does help a little with pain meds warmth or ice depending on what works for you. come on here when ever you need to let off steam i was sure the first couple of times i went to rhummy that he was going to say it was all in my head lol so we do understand and the waiting is awfull stay strong will be over soon val

skezier

Hi Star,

Welcome to the forum.

Its hard prior to real diagnosis but after that they do give you a lot of treatment and thats both anti-inflammatories and pain control. As the pain gets worse so the tablets are either upped, strengthened and dded to so it not, or shouldn't be if your gp in on the ball, constant bad pain all the time.

In the early stages pain can be eliminated but its kept under control after than. With mine they keep it with in a manageable level for many years. Now it breaks through and they are trying to find a suitable add in and might have done so but its only on a month's trial.

What I am trying to say is it does get better once you have the full diagnosis but the time in no mans land is hell.

If your bloods were positive for the rf they should treat you. The other tests are as you say just routine but hopefully they will get it together and see you again very soon. In the mean time have you got anything for the pain from the gp? Maybe they can help in the intrim time cus you rally shouldn't be just left in pain for now,.

I understand its hard just now but it will get easier and they will find you some kind of treatment. Nice to meet you and hope today will be a bit better fro you. Cris x

Mat48

Hello Star - I'm new here and in the same boat exactly. I too have a positive RF and had raised inflammatory markers but no visible swelling at all. I have had a lot of pain and it's SO frustrating when it doesn't show because you think the doctors are not believing you? The few times I've had visible swelling and redness in joint areas have been at night and then have disappeared (the swelling not the pain!) when I get up. My GP and the rheumy said they needed to see a flare before diagnosing RA but so far that doesn't feel very likely.

Have you had an anti-CCP test I wonder? This is the blood test that is relatively new and more specific to RA so more helpful re diagnosis than the Rheumatoid Factor test. I had one done at the instruction of the consultant but I have never been told the result and only get to see the rheumatologist every four months (November is next one) so no idea how to find out. I am thinking that it must have been negative if I haven't been told but then it may be stuck in a file in a huge hospital and I wouldn't be able to access it. It's a couple of months since it was taken though so I will go to see a GP (not mine who is on holiday this week) and ask her today because my knees have been bad and my wrists and I want them to know that I've not disappeared. Sad isn't it?!

If you haven't had the anti-ccp I recommend you ask for one next time you see the consultant. Take care, Mat

frogmorton

Hi Star

l am so sorry you feel so much pain at the moment. I am sorry if you said l can't remember what you are taking. Are you taking a pain killer and an anti-inflammatory?? If not then that is a thought to sticking plaster you over until you get some proper help.

I think all being well that 'they' will treat you but want to know how aggressive the disease is for yo and whether any damage has happened. Try not to see the 'good' results negatively;they will still help you when you see them next.

How far off is your next appointment? If it is a long way off you could go back to your Gp and ask for stronger pain relief.

Love and hugs

Toni xx

traluvie

Hi Star,

I just wanted to give you some reassurance..
I had an ultrasound on hands and was inconclusive, no definite signs of damage or inflammation, I had nothing showing up in my bloods but i knew what i was experiencing was real..
My rheumy was great in that he believed something was going on he gave a steroid injection and requested a bone scan which showed inflammation in various joints.I then started on hydroxychloroquine to reduce infalammation and slow the disease process down..Although i am still under investigation and having various tests done i am better than i was in regards to pain and swelling..
There is hope and although you think that they can't find anything they if you have a good doc they will investigate properly, and if they don't, then see someone else..Do not give up..You will get there it just may be a bit of an uphill struggle but we are all here to support you on your way..

Mat48

Hi again - just another thought/ suggestion - it could be Palendromic Rheumatism which is sometimes the precursor to RA - especially if you have a positive factor? I certainly think this might be what they tell me at the next consultation in November if I continue to have no visible inflammation or reddening/ touch heat. I understand that the inflammatory markers are important - especially if there's no visible sign - because it is the inflammation that does the damage.

But as the author of the previous post has pointed out some of us don't show swelling in the same way as others and I was disappointed that my GP and the consultant seemed unaware of this. I would have liked my knees and feet to be scanned but as my hands and wrists were x-rayed and showed no destruction despite pain they seemed to think that was enough?

Two of my sons, when at primary school, broke their wrists and one went for 2 days before being x-rayed and the other went for a month and then it was too late and we were just very lucky that it had healed itself. In both cases I was told "no swelling = no fracture" and there were some very red faces when the x-ray finally showed that it had been a full break after all! Good luck and we can at least try and experiment while we are free of toxic meds which can bring many side effects. I use Amitriptyline mg and codeine 15mg before bed when the pain is bad - seems to help up to a point and paracetamol during the day for when things are really bad :green - Mat

Star2001

Thank you DD Val Cris Mat Toni and Tracy. I am sorry this is late but not been well the past few days. I am trying to get on with things as normal but you all know it is so hard with tiredness and pain. The housework is getting me down but my husband helps as much as he can. Mat, I will read up on Palindromic Rheumatism, thankyou. I notice that one of my thumbs is much bigger that the other today (can it affect just one side?) and this is the first real sign of swelling that I've noticed myself since the signs which took me to gp in the first place. My last blood tests were for Bone profile, CRP, Ferritin, Liver Function, eGFR (whatever that is) Iric Acid and ESR again. Tracy, your post has calmed me down. No sign of damage is a positive thing really as Toni said isn't it? I know xrays showed lots of damage due to OA and that accounts for some of the pain.
My appointment is in 10 weeks. Am so disappointed. Thought and was led to believe it would be much sooner. I am taking co-codamol now (codeine caused problems in another dept if you know what I mean) and it is helping a bit more. Thankyou all and sorry I don't come in much. It is getting me down but I know you have all been the same a lot of the time.

Mat48

Poor you Star - I know it all got me down terribly back at the start of the summer and OH finally twigged that I was seriously depressed and phoned our GP to learn more about why I was in such a stew about the prospect of RA and struggling with all the uncertainty. He had been in denial until he spoke to my GP - but afterwards he seemed a bit more switched on which helped a lot.

I am bizarrely up beat these days, ever since I read about Palindromic Rheumatism I feel better because I'm so certain that this is what I've got. Maybe you will feel similarly although you are probably suffering from the systemic nature of the beast if you feel really tired and unwell. I have to say I don't - and in that way I know I'm lucky and am taking each day as it comes because I realise things could easily get much worse - but I'm just hoping they will get better instead!

Last night I went out to the local Blue's Festival and OH went to work (he works nights at a care home for the elderly) so he dropped me off as I felt rubbish but had promised a friend that I'd come. I ended up having a nice night out, but too much standing as all seats were taken. When I went to bed my right hand fingers all felt really sore and my wrist too so I took painkillers and amitriptilyne (10mgs used to work for me but starting to wonder about asking GP about upping the dose) and woke up in the night unable to move my right hand at all - it had locked. Then this morning it is just very stiff but also I find that I can hardly walk on my right foot and the ball of my foot is visibly swollen. Like you I rarely get much visible swelling so I just took photos - one of each foot to compare and it really shows a difference. I'm thinking of showing these to my GP on Thursday but I sent previous ones of my knees to my sister and she just said she can't seen anything but elegant legs so maybe I'm just over observant because I can feel how much it hurts and seem to see the pain?!

Often when some part of me goes into pain mode - and now all is stiff as well - I can trace it back to things I have done and wonder if my feet were always a bit sore after standing for hours or if I ran for the bus did my knees always hurt a bit afterwards? But having one so much sorer than the other seems to be a more Palindromic thing than RA so I'm riding with my own diagnosis for now as there is always the possiblility that it will burn itself out with PR.

Good luck for your day. We will both have to see what November brings for us and meanwhile at least there's plenty of time to experiment with diet, food elimination and researching online? :???:

Hope you feel much better soon. Mat x

Mat48

http://www.palindromicrheumatism.org/whatispr.shtml

There is an "Official" site which is probably the real thing and more informative but this one has an interesting voice over about PR from a rheumatologist.

Star2001

Oh thankyou Mat. I am so glad to hear of your good night out. Awful that you suffered so much in the night but I hope your foot pain has settled. I have done as much as possible today with not too much trouble so I am calling it a good day so far. Thanks again for your help and I will look at the link you gave.

suzyc68

Hello Star,

Ive just seen your message and i posted something similar about pain in the young peoples forum. i really sympathise with you, because ive been newly diagnosed with OA in spine and hip, but have had years of constant pain, and sometimes you have bad days and other days its there, but you can actually cope with it. the worst thing for me is how tired it makes me.

If you feel like crying- do it and have some ice cream and chocolate (always cheers me up the reason i joined this site last week was because i was having a really bad day. ive been trying to exercise as much as possible- partly because for me i know it will help my back, but also its supposed to release hormones which will make you feel happy!

i think coming to terms with the pain and what actually helps and doesnt help is the most difficult thing, and i think knowing there is a site like this was is very useful, and nice to know there are people out there in similar situations that understand.
i hope you manage to find a happy medium.

suzanne x

averyniceman

Sorry to hear about your pain.

If ESR and CRP were normal, and you are negative for CCP, then it may not be any sort of inflammatory arthritis. Quite a large percentage of people are positive for RF and never develop arthritis, especially if only lightly positive.

If the blood tests were like I described, then one syndrome which may be relevant to you is "borderline rheumatic condition" There's a paper about it here

http://www.lupus-support.org.uk/BRC.htm

Good luck.

barbara12

Hi Star
The others have said it all really, but I just want to say welcome to this lovely forum, and if you want a rant or moan you go ahead, it will make a difference just to get things off your chest.
Hope that things improve very soon.

angie1973

I just wanted to come on and offer a hug.

It can be so hard when you are waiting to find out what's going on with you.

I had to wait over 8 years before being properly diagnosed with fibro and OA. Had all the symptoms and pain, but no-one bothered to assemble the jigsaw.

Still, sounds like they are running all the tests, so it's a process of going through the motions etc. Hard though, when the pain is so bad. Don't suffer in silence though, never do that. Get some decent pain relief, no doctor should not offer that when you are in pain.

I hope you get a firm diagnosis soon so you can start getting to grips and getting a plan of action together.

Thinking of you.
Ange..xx

Mat48

Well I for one found that link re borderline rheumatic conditions very interesting and useful to read - many thanks. Mat x

Star2001

Sorry I have just seen the extra posts. I haven't found myself able to participate fully in the forum yet but I do appreciate the effort people make in replying and I fully intend to do the same when I get sorted. Thankyou for the virtual hugs and the good advice and the link which I will check out. My ESR was only 26 but I don't get the other results I mentioned until my next rheumatology appointment. I don't know if 26 is high but that's one of the reasons I was referred in the first place.
Thankyou.

dreamdaisy

I remember being told that ESR and CRP should ideally be as close to zero as possible. 26 would indicate inflammation but perhaps not enough to show as swelling - but remember I am not a doc. My ESR and CRP are ridiculously low at the moment thanks to the humira I take, so I have no swelling at all but the pain has not abated one bit: that has to be due to joint damage (I am much further down this road than you). I do occasionally get swelling in my knees but the ESR etc do not alter. Now that I don't understand! DD

Mat48

On subject of uncertainty. I've just returned from GP re wrists and other areas of pain. He said my knuckles were swollen on my right hand but couldn't really see the swelling in my wrists which I can see and feel. He tried to tell me that it's not a good idea doing repetitive activity for intense bursts as I do - but that's the nature of my work as an artist?

I told GP that until the rheumy comes up with a diagnosis I can't allow myself to take the pain too seriously or be led by it. It feels too horrible to think that it might go on and on so if he can't believe in it enough to diagnose it then how can I? Either it's benign and not doing damage to my joints as I presume he thinks it is - or else he trusts my accounts of my symptoms and doesn't just go by bloods and makes a diagnosis - in which case I'll trust that he's right and learn to accept the pain more readily instead of continually fighting it.

Hope this makes some sense and fits with the trials and tribulations that come with uncertainty which this post is about? My GP certainly seemed to understand better once I'd spelt it out to him anyway and I felt better too. But if, on the basis of one 30 minute consultation and my blood test results, the consultant wants to dismiss me from his list - then I want to at least make it clear via GP that the pain and stiffness seems to be hanging around causing havoc to my daily life and I need some clarity or I'll continue to ignore it as best I can and the consequences might be bad but that will be their fault for not listening enough to me! Mat x