Arthrits or not???

jayn12

Hello All

As a newbie to the forum, I am unsure about how to say things. But will write anyway, so if anyone has an answer, I will be truly grateful.

I have run through the gammot of blood tests and scans (including a bone scan). The rheumy says they show nothing - no inflamation no CRP count. Though he did say there was increased uptake in the skull area.

Now, I have been steadily deteriorating over the last six months, and am unable to walk without a walking stick now :x Shoulders, wrists, knees and ankle joints are swollen beyond recognition. Am on hyidocodine and Gabapeptin, Predisolone (10mg) and a boiphosphate for the osteoporosis. Get very stiff in the mornings, and stiffen if I don'd walk, but walking is agony :x No diagnosis yet :?

Anyone else with these symptoms? Can anyone help with what I need to ask the rheumy now? HAve an appointment with him in about 5 weeks

Thank you so very much for your replies.

Jayn12xx

tillytop

Hello Jayn and welcome to the forum!

Unfortunately I can't reply properly now cos I am on the way out and I am already late (as usual :roll:) but I just wanted to say "hello" and that I will reply properly later on today hopefully, otherwise tomorrow.

I know others will be along with replies too in due course.

Thinking of you.

Tillyxxx

LignumVitae

Hi Jayn

I was always told that blood tests weren't definitive so the lack of CRP etc might not be diagnostic. It can take a long time and combo's of meds to reach a diagnosis so don't panic. The main thing is you are in the care of a rheumatologist so you are heading in the right direction. I often find the question 'what do you think?' is simple enough but can bring a consultant to their knees - they hate the reply 'I don't know' but that can sometimes be more reassuring than hearing the none replies you might be getting.

If you find not moving stiffens you up then I find that a heat pack is a good way to reduce the stiffness (I type with with one clamped on my lower back), likewise an oh so attractive wobble cushion might help too. Morning stiffness is a pain in the backside (literally some days), I have a routine of a warm shower where I stay in for a while and do lots of things like clean my teeth and move the water around the sore bits giving each sore bit a turn helps. I also make sure I have time in a morning to sit in bed and start with gentle movements, a cuppa and my pills so that by the time I am moving it is as easy as it possibly can be. Mr LV thought it was a bit strange when he first observed it but now he sees why and is even kind enough to bring me the coffee most mornings!

Hope that helps, keep posting and don't worry about saying things that are wrong etc - we don't really have right and wrong rules on here - we just look out for each other!

Love and hugs,

LV xx

dreamdaisy

CRP is only one mesaure of inflammation, have you ever been checked for ESR, CCRP (I think it's called that) or rheumatoid factor? My factor was (and still is) negative but my ESR and CRP were always high so I was termed an 'inflammatory arthritis' suffer. Eventually that label was altered to a diagnosis of psoriatic arthritis (PsA) and the joint damage from that has also led to OA in my knees and ankles. That doesn't show on any blood test.

There are many forms of inflammatory arthritis and they can be very tricky to diagnose. Who referrred you to the rheumatologist and why? How long have you had osteoporosis and for how long have you been taking your current meds? I empathise with the stick but I'm wondering if two would be of greater benefit? That helps to 'spread the load' more evenly, I now 'walk' like a quadruped! I apologise for asking all those questions but it may give me some greater insight as to what may be going on with you but as I am not a doc I won't be able to diagnose. I wish you well. DD

jayn12

Thanks for all your replies. To Dream a daisy, I was diagonised with Osteoporosis Lower Back August last year - have Osteopenia in the hips.

Was refered to the Rheumy by the GP. Says he's pretty confused with the situation as well. I am trying to get on wioth things (have a 10 year old and work full time (commute from Kent to London). The problem with even one walking stick is the commute. God sometimes I wish I did nto have to work, the Gabapetin is making me feel so depressed. But I do try to soldier on. Am planning on joining the gym for a few Aqua exercises. Husband and child are so very supportive that it makes me want to cry, sometimes feel that this is all in my head and all the infections and hospitalisation has been my fault

But I am so glad I've found you - I hope I can cry on your shoulders and laugh with you. Hope I can be of same help to someone once I've travelled out of this tunnel.

Jayn12xxxx

LignumVitae

Awwww Jayn,
You can always cry on the shoulders here (although some of them are a bit achy and sore ). We are a friendly bunch and we see each other through lots.
If your family are supportive that is because you reap what you sow and you obviously give them lots too.
I know I went quite a long time in the pre-diagnosis stage waiting for a label/ diagnosis for my symptoms wondering if I was a bit crazy and making things up but I wasn't so don't think doing that is odd, I think it is just human nature - if it was a giant boil that hurt you wouldn't think that was mad but because you can't 'see' the badness doesn't mean it isn't there.
You sound like you are working really hard, is there any chance of home working some of that? It really helps me knocking out some commutes. It also sounds like you are doing all you can to find a way through with exercise and all that. I think you need to be a bit kinder on yourself and see how much you are doing/ have done and how brave you have already been. Keeping working and coping with a family to care for too is admirable, well done.
None of this arthritis business is known for it's natural highs and happy moments but you will get through and over time it does get easier to get your head around for most of the time and put in place the things you need to cope your way.
Big big hugs,
LV xx

tillytop

Hello again Jayn

Just replying properly now as promised.

First off, just to say that I am so sorry you are struggling so much with multiple joints. Many of us have been there and we do understand how difficult it can be.

As others have said in their replies, inflammatory arthritis can be very tricky to diagnose, particularly if it doesn't follow a recognised "pattern". I have had Rheumatoid Arthritis for nearly 17 years and when I went for my first rheumatology appt, despite being literally seized from top to toe for much of the time, my inflammatory blood markers were apparently normal and I had little visible swelling. My diagnosis was made, I think, based on the fact that my blood tests showed a high rheumatoid factor, the fact that my joint involvement followed the "classic" RA pattern, and on my description of my pain and stiffness. Subsequently my blood tests showed clear evidence of inflammation but my blood markers have never been particularly high and I have never had much swelling at all.

I am really pleased you have another rheumatology appt soon (although I wish it was sooner for you). My advice would be to keep a careful note of all your symptoms day by day - even if you don't think they are necessarily relevant and to write them down in such a way that you can give a copy to the doc when you see him. (I know it's a faff when you are feeling so unwell but, if you are anything like me, you think you will remember everything but, when it comes to it, you just go competely blank :roll: ) "How long does your morning stiffness last?" is, in my experience an oft asked question at rheumatology appts so it's a good idea to keep a note of it - and if it lasts all day, note that down too, together with the fact that you stiffen up again when you are not moving. The information in your first post was, I thought, a really good summary of the situation and if you could share that with the doc in the same way you have with us, I think he will begin to get the picture. The other thing I would suggest is that (if you can) you take photos of your swollen joints and print them off to take with you. That can be particularly useful if the swelling is variable because ****'s law can often mean that your appt falls on a day when things are less swollen than normal.

I very much hope that the rhematologist can get to the bottom of what is happening and can give you a diagnosis and some proper help. As I'm sure you know, prednisolone and osteoporosis are not a good combination so, if you can get a proper diagnosis and get on to some more appropriate meds you may be able to reduce the pred and perhaps swap the stronger pain meds for something which gives you few side effects.

Thinking of you Jayn - and please do keep us posted as to how you are getting on. We are a friendly bunch and are always here to listen.

Tillyxxx

jayn12

Hello,

It's only me again

Have walked about 3ks and feel pooped out. Back pain has returned and knees have given way. But am feeling good, 'cause took my 10 year old seimming and she is so full of energy and was so happy , the pain almost seems worth it. Am in bed with the heating on.

May I please ask another question? Has anyone used the NHS choices at all? I have been told that I can ask to move to a different hospital i.e. London from Kent. If anyone has exercised their choice, may I please know how easy/difficult it has been? I am begining to get the feeling that work is not very happy with the time off they have to give me re: hospital appointments. If I can move to London, I need not miss a day off work.

Thank you all

Jxx

LignumVitae

I've moved between three hospitals, none of them in my local area and it's never been an issue. The gp just referred me. Well done on your walk, we all do things we probably shouldn't for a greater reward now and then. Just rest up and let it settle before you do the next thing!
LV xx

hileena111

Hi Jayne
I dont think I can add much to what others have said
Just wanted to welcome you to the forum

Love
Hileena

Mat48

Hi Jayne - others here have said most of the important stuff but just to add that if you can push yourself a little each day on the exercise front that will pay off in the long run. I know it's really hard when you are in so much pain and working etc but it's the main way to get to the other side I have found. You are probably in more pain for having to trek to work and back and keep everything going - even if you could go part time for a while until you have a diagnosis and are on appropriate medication it would undoubtedly help.

I was only diagnosed after sending my rheumy doctor photos of my swollen knuckles and fingers. When he saw these he knew I had RA because of the type and location of the swelling. RA is quite particular in this way. As others have said it can take a long time to diagnose and because the meds for inflammatory arthritis are so strong (and you are already on a drug for Osteoporosis of course) they want to get it right. Good luck, Mat x

tillytop

Hello again Jayn

I can't help on the moving hospital question but I thought of you the other day when I was reading a booklet sent to me by the National Osteoporosis Society (I too have osteoporosis). My understanding from your post is that your joint pain started before you began the osteoporosis meds, and this isn't said to worry you, but the osteoporosis booklet states that some of the bisphosphonate drugs have musculoskeletal pain as a side effect so I just wanted to bring that to your attention (if you weren't already aware) as something which might be worth mentioning to the rheumatologist when you go, just in case that is a complicating factor.

Tillyxxx

jayn12

Hi guys

Thought I'd update you on the hospital front. My GP was ever so understanding and wrote a referral as soon as asked him. So now I have an appointment at Tommy's on the 10th of October. Just glad to be able to get a second opinion.

Have to say thenk you to all of you who took the time to reply. Was compeltely bed bound after the long walk on Monday. Guess I really should listen to sense :oops:

Geltle hugs to all

Jxx

dreamdaisy

I reckon we all know (in theory) what we should listen and pay heed to BUT . . . . . somehow it's different when it applies to you. (I remember listening to a radio interview with someone who said 'Bad stuff happens to other people then suddenly I was other people.' How true.) One of the ways to learn about Living With Arthritis is to do too much, pay the price, and try to remember not to do so much again. It's a steep learning curve. DD

Mat48

Yes I agree with DD here although the whole pacing things notion is an anathema to me so I now find that the more I do the more I need to do to stop myself from siezing up - so I have to pace the pacing?! Mat x

dreamdaisy

It was anathema to me too but, sadly, it works. DD