Newbie - possible arthritis - feeling glum

pinkteapot

Hi all,

Newbie to the forums here.

I'll try and keep the story short! A year ago (almost exactly, March 2010) I started getting pain in the ball of my foot. I had taken up running 6 months previously so assumed it was a running injury. It got progressively worse despite rest so in July I went to the doctor who referred me to orthopaedics. They found nothing wrong on x-ray so sent me for physio. Been seeing my lovely physiotherapist since August (I have Bupa through work so all of this has been private).

The foot issue is the third metatarsal head, in the joint at the base of the toe. Physio got the pain under control and had me work on strengthening exercises etc. Just recently it's manageable. I do have pain and have to wear trainers full time with orthotic insoles, but I know the pain and how to treat it. I get pain from over-use and subtly different pain from under-use when it stiffens up.

ANYWAY (!), around Christmas my left index finger started hurting. It's pain on curling the finger - tendon pain. Basically, it's got steadily worse and worse and the finger is now swollen like a sausage and can't be bent at all without severe pain. About a month ago I first went to the GP, was given naproxen and then upgraded to diclofenac on a subsequent visit. Went back last week and have been referred to a rheumatologist.

I'm 30 and have had psoriasis since I was a teenager so the GP says the finger issue may just be tendonitis, but the psoriasis and the foot issue makes psoriatic arthritis a possibility. Hence the rheumatologist referral. :sad:

Physio is in two minds - he said yes it could be that, but equally he thinks the foot is explainable due to an old injury there and the way I walk, and that the finger is due to typing.

I've had pain continuously, to varying extents for a year now and it's currently at its worst due to the finger. The finger is also causing me serious day to day issues doing normal stuff. The whole thing is getting me down a bit and the prospect of it being arthritis is really scaring me. I guess because I've constantly told myself these things will get better. Got married last June and now feel like I've lumbered my hubby with a broken wife!

I don't know what to expect at the rheumatologist appointment which is on Tuesday. GP already did bloods which ruled out RA and gout. I know there's no test for psoriatic arthritis so not sure what he'll say. I wish there was a definitive test so that I'd know what was going on.

This all sounds really whingy! I'm just scared. All my hobbies are physical and hubby and I want to start trying for a family soon and I'm scared about the impact this pain will have on my life if it's not injuries that will heal. I think I'll pick myself up and get on with things once I know for sure what it is, but I'm worried that won't be for ages. :???:

dorcas

Hi pinkteapot, what a great name!

nice to meet you but sorry it's due to worries about arthritis. :roll:

The first thing I'd say is.... don't panic!

It's natural to feel that your life is suddenly being changed ..and natural to worry about whether it is Psoriatic Arthritis (PA) and the impact this may have on your plans and lifestyle.

However it may not be PA ...and if it is.. then the good thing is that you've been referred very quickly to a rheumatologist which means that if necessary you'll get started on effective treatment to control the arthritis.

I've had PA 15yrs and from my own experience it did not, in the short term, have a huge impact on my daily life. I continued to work, look after my family and do the things I wanted to do. It was controllable and liveable for many years.
It doesn't 'do' to look too far ahead! and it may well be that you will be able to have the problems you're experiencing dealt with.. with the correct meds.

In preparation for your appointment I'd suggest you keep a daily diary of
the signs and symptoms you're experiencing... which joints are affected, whether they are red, sore, inflamed or stiff and how long the stiffness lasts. Reflect on what drugs and treatments you've tried, what worked or didn't work; whether there's a family history of psoriasis/ arthritis; If you've had Xrays, tests, it might help to jot the type of investigations/ dates down.

You're right that PA doesn't show in blood tests as it's one of the sero-negatives but other tests such as ESR and CRP (inflammatory markers) will help your rheummy piece together a picture of what type of arther it might be. Fingers interest the rheumatologist as (over time) the type of erosion seen on xray is quite distinct from RA .

|I'm sure other folks will be along soon with more suggestions.

Keep your chin up and take things one step at a time.

Iris xxx

pinkteapot

Thanks for the quick reply.

On my list for the weekend is to make a list of everything that's happened so far; psoriasis history, the toe thing and the finger issue. Part of me hopes the rheumatologist takes one look at me and sends me off to orthopaedics. But I've tried everything that should work on tendonitis (rest, taping, ice, elevation...) and it's just got worse and worse. It keeps waking me up at night now if I move my finger in my sleep, and it's unbelievably stiff first thing in the morning.

I've been on diclofenac for three weeks now and it doesn't seem to have helped much. Again, probably jumping ahead, but worried the rheumy will suggest MTX as I don't want to end up taking it because we plan on starting a family very soon (trying to at least).

Does anyone know how much is likely to happen at a first appt? Hubby offered to leave work to come but I don't want to waste his time if we aren't likely to get very far. Would rather save him for follow-ups as it's awkward for him to miss too much work...

julie47

Hi pinkteapot

Iris has given you some great advice so all i want to do is say welcome to the forum and good luck with the rhummy appointment next week.

Let us know how you get on

Take care
juliepf x

pinkteapot

Thanks juliepf - going to feel like an awful fraud if it's something minor after all. :oops:

julie47

just as I pressed submit so did you so we clashed.

I got transferred to a different hospital just last year after seeing the same rheumatatologist for nearly 20 years. So my app was like starting all over again.......I went through my history , had bloods done., was weighed....had a wee test...(so take a sample just in case)..and they sent me for xrays.....they checked my meds which they left alone and that was about it. If they give you medication after looking at past results they will want to see you after a couple of months to make sure you are responding.

Don't feel a fraud these things need checking out and hey its good news (well I would be happy) if nothing is wrong.
Will have my fingers crossed for you.

Juliepf x

skezier

Hi Pinkteapot,

Welcome to the forum though sorry you have had to find it.

Tis normal to be worried and scared i think but it might not be as aggressive as you fear and might be controlled for a very long time so don't see all your plans and hopes go out the door.

I agree with Iris and you can't look too far ahead. Your rumo referral is close now and with luck they will be able to sort out what is wrong and help get it under control in a way that wont stop you having a family as well.

I was seeing one already so don't know what the first one for bones actually is as I saw mine for something else for 5-6 years before the bones got added in but he did do an mri and bloods and examined the bones and I kinda think that's what they would do at the first consultation as well. They can have their own way of working but Iris has given you some good advise there. Good luck next week and nice to meet you. Cris x

caterina57

Hi Pink Teapot,
Cant help with the Rheummie advice because I have OA. However just wanted to welcome you, lots of others here have PA and they will give you lots of advice and support because they know their stuff. Try not to worry too much and keep in touch with us - we will even come with you in your "pockets" to support you at your appointment.
Cath

keith1971

Just thought I'd add my two cents as I'm recently diagnosed with PsA myself & it all started with a fat middle finger.

I have aches & pains in my ankles & other bits & bobs too & have just started taking Sulfazine as like you, my wife & I are trying for another baby & obviously Meth isn't an option.

I personally don't like being defined by this disease & it certainly hasn't stopped me from doing all the normal things I like to do & hopefully with the right medication & diet, things will stay that way.

Whatever your diagnosis, realise that you're not going to end up in a wheelchair overnight. Just take the meds, listen to your body & get on with trying to live a normal life.

All the best,

K.
x

pinkteapot

Thanks all. All the advice and support is really appreciated. Whether this is arthritis or not it's causing some day-to-day practical problems and I've already read lots of tips on other threads that will be useful.

A couple of people commented that even if it is diagnosed it's not a sudden overnight progression to a serious case. I know that and I didn't mean to sound like I thought/felt otherwise. I'm just one of those people who thinks far ahead. Too far ahead normally. If I look at the pain I've developed in the last 12 months and how it has good and bad days then it's not so scary in the short term.

Thanks again for sharing your stories and advice. Definitely helped with a lot of stuff that I've been going over and over in my mind. And I will keep you posted on how the appt. goes next week!

katie5

hi pinkteapot

just want to say hello - i'm an OA sufferer and have been for the last 19yrs still only young though at 40 ! i'm waiting for some blood test results and am worrying too its hard not to but you'll get lots of support from everyone here - they're always ready to give big hugs and words of wisdom.

take care

Katie xx

traluvie

Hi pinkteapot..

Welcome to the forum..
It's natural to feel apprehensive i did at mine..
I have only been having symptoms since sep 10 and was lucky to have a quick diagnosis..
My bloods came back ok and so did ultrasounds, it was the bone scan which showed inflammatory arthritis in elbows,wrists,ankles, feet and OA in knees..
My first rheumy appointment consisted of family history and general health questions like have i had a cold or injury recently etc.. he then asked for my symptoms and checked my joints.. then he arranged bloods and xrays..
I would suggest you write a list of symptoms and things you would like to say as it can be quite daunting on your first visit, but hopefully it will be successful. at least the ball will be rolling..
I am affected day to day, each day os different so i can only take one day at a time... looking too far into the future can be an added burden, wondering what if?? Some people are sucessful with there treatment and can lead a good life.. I am on Hydroxy and am not feeling any benefits as of yet but it is still early days..
I wish you well for tues..
Let us know how you get on..

lavenderlady

hi Pinkteapot , I have OA and sero neg along with other health problems , my nan had both types of arthritis which at the time i beleive was either or both OA or RA so I always had a faint idea of what I had coming to me and why I am now giving my 15 year old daughter with hyper mobile joints Rosehip trying so hard to stop her suffering as we do, I'm 50 and have suffered with it since I was in my late 20s have had a wrist replacment and am seeing the surgeon monday baout my feet mainly toe joints which are deformed and painful, but what I'm trying to say is even if you are told its Arthritis I've had 5 children managed well with it my youngest I had aged 34 but pregnancy hormones can actually help ease the pain,
as for managing with young children you cope you might make allowances like sleep when they do etc, but you would cope, it will take time for it to develope and in my case damage your joints, so live for today dont worry you will manage, we all have done so good luck michelle

bubbadog

Hi, Your situation sounds similar to me except I used NHS. But my second time leg gave way, what I am trying to say is I was told it was Fibromyalgia, I don't know if you have ever heard of it but I have Fibro as well! It is a case of wait what your doc says and it may be a case of getting 2nd opinion on the NHS. Hope it gets sorted out . Bubbadog.

pinkteapot wrote:

Hi all,

Newbie to the forums here.

I'll try and keep the story short! A year ago (almost exactly, March 2010) I started getting pain in the ball of my foot. I had taken up running 6 months previously so assumed it was a running injury. It got progressively worse despite rest so in July I went to the doctor who referred me to orthopaedics. They found nothing wrong on x-ray so sent me for physio. Been seeing my lovely physiotherapist since August (I have Bupa through work so all of this has been private).

The foot issue is the third metatarsal head, in the joint at the base of the toe. Physio got the pain under control and had me work on strengthening exercises etc. Just recently it's manageable. I do have pain and have to wear trainers full time with orthotic insoles, but I know the pain and how to treat it. I get pain from over-use and subtly different pain from under-use when it stiffens up.

ANYWAY (!), around Christmas my left index finger started hurting. It's pain on curling the finger - tendon pain. Basically, it's got steadily worse and worse and the finger is now swollen like a sausage and can't be bent at all without severe pain. About a month ago I first went to the GP, was given naproxen and then upgraded to diclofenac on a subsequent visit. Went back last week and have been referred to a rheumatologist.

I'm 30 and have had psoriasis since I was a teenager so the GP says the finger issue may just be tendonitis, but the psoriasis and the foot issue makes psoriatic arthritis a possibility. Hence the rheumatologist referral. :sad:

Physio is in two minds - he said yes it could be that, but equally he thinks the foot is explainable due to an old injury there and the way I walk, and that the finger is due to typing.

I've had pain continuously, to varying extents for a year now and it's currently at its worst due to the finger. The finger is also causing me serious day to day issues doing normal stuff. The whole thing is getting me down a bit and the prospect of it being arthritis is really scaring me. I guess because I've constantly told myself these things will get better. Got married last June and now feel like I've lumbered my hubby with a broken wife!

I don't know what to expect at the rheumatologist appointment which is on Tuesday. GP already did bloods which ruled out RA and gout. I know there's no test for psoriatic arthritis so not sure what he'll say. I wish there was a definitive test so that I'd know what was going on.

This all sounds really whingy! I'm just scared. All my hobbies are physical and hubby and I want to start trying for a family soon and I'm scared about the impact this pain will have on my life if it's not injuries that will heal. I think I'll pick myself up and get on with things once I know for sure what it is, but I'm worried that won't be for ages. :???:

frogmorton

Hi Pinkteapot

Good to meet you wlcome to the forums from me.

The worst time is the scary not knowing time. This is the time I hated most...

Suggest that the fact you want to try for a baby at your first visit so you can perhaps have any meds delayed until afterwards. Your wish to have a family is totally undrstandable and your doctor will want to help you in any way he/she can.

As Dorcas said most peopel are pretty well ok for a good while so try not to panic or read scary stuff. just talk to us lot as we tend not to be scaremongers!!

Love

toni xx

tillytop

Hello Pinkteapot and belated "welcome" from me too (sorry, late for everything me :roll: )

I can't really add anything to the great advice the other peeps have given but I do think that it would be good if you could take your husband with you into your appointment. I actually think it's possibly more important to have him with you for this appointment so you can both hear what is being said. Also, whilst this is so new to you, there is so much to take iin and it is easy to forget what has been said and I know from experience that two pair of ears are better than one. Also, even after many years, I tend to get myself in a bit of a tizzy about appointments and there have been times when my husband has remembered to ask something which I would have completely forgotten. I tend to "practice" what I am going to say beforehand and tell my husband so he can "prompt" if necessary. I only recently started asking him to come into my appts with me and it makes the world of difference.

Ooh, just one other thought (apologies if I am repeating what has already been said) - I would recommend that, if possible, you take with you a copy of your GPs referral letter and a copy of the blood results just to make sure that the consultant has access to all the relevant information for your appointment.

Really, really good luck with the appointment. Will be thinking of you.

Love Tilly xxx

pinkteapot

Thanks again all...

I had a diagnostic ultrasound on my foot at the physio's in January, as the physio was baffled as to why it had got a lot better but then suddenly worsened again over Christmas (stiffened up badly). At that point my finger wasn't really an issue so they were looking for sports injuries but everything looked healthy. I emailed ahead of the rheumatologist appointment and asked if anything arthritic would have shown up. Have had the following back which I'll take with me:

"There was no sign of any rheumatological diseases - i.e. there was no significant joint effusion (swelling) and no erosions. On colour doppler there was no hyperaemia (incaresed blood flow). This will make sense to the rheumatologist."

So that sounds good.

I'm a bit nervous that the rheumatologist will just think I'm a hypochondriac and chuck me out saying there's nothing wrong with me. Nothing wrong showed up on my X-Ray last July or the ultrasound in January (foot was having a good day when I had that), or in my blood tests. Feeling a bit like I'm fussing over nothing. But I know that my foot has hurt for a year now to varying extents (the only shoes I can wear are hiking trainers with orthotic insoles) and my index finger is very swollen and I can only bend it about 30 degrees. Scared I'm going to be told again that nothing's really wrong.

I'm in two minds about asking hubby to come because of the above. If the appointment is a quick "no, nothing rheumatological wrong with you, make an appointment in orthopaedics and maybe they can do something about your finger" then it's a complete waste of an afternoon for him.

:???:

dreamdaisy

I lost a year of possible help/treatment being bounced between rheumatology and orthopaedics so don't be fobbed off. What is happening to you does not sound right and does sound arthritic - maybe not badly so but stuff has to start somewhere and somehow. I think moral support is never wasted and if you need back-up then take it with you. I have lost count of the appointments Mr DD has come to with me and he has reassured me again and again that this is not a waste of his time - his view is that this is a joint battle even tho I have the toughest bit to deal with. I wish you well and do let us know how you get on. DD

frogmorton

pinkteapot wrote:

Thanks again all...
."

So that sounds good.

I'm a bit nervous that the rheumatologist will just think I'm a hypochondriac and chuck me out saying there's nothing wrong with me. Scared I'm going to be told again that nothing's really wrong.

I'm in two minds about asking hubby to come because of the above. If the appointment is a quick "no, nothing rheumatological wrong with you, make an appointment in orthopaedics and maybe they can do something about your finger" then it's a complete waste of an afternoon for him.

:???:

Now Pinky

You Take him to PREVENT the above - his opinion is valid he can say what HE sees and back you up take him 100% take him

Love

toni xx

pinkteapot

Thanks Toni and DD. Hubby is going to try and get the afternoon off work but I don't know if he'll be able to.

He (MrTeapot) keeps telling me that it's not going to turn out to be arthritis. He's also the worst person I know for asking questions at the doctors. He has had health issues before and I'm the one that asks lots of questions. So mostly he'd be along for hand-holding.

frogmorton

and hugging too!

Mr Teapot needs to be there - only one time was I discharged when I didnt want to be he wasn't there and the first time I went about my swollen bits to the GP he wasnt there and the doc said I had pulled a muscle!!!!

Love

toni xx

pinkteapot

Well, I had my first rheumatologist appointment today...

Firstly, I love my rheumatologist. I was nervous after seeing a very dismissive orthopaedic surgeon last year. But this doctor put me completely at ease right from the off.

Secondly, his specialism is psoriatic arthritis and it has been for 25 years! So I really did see the best possible person.

He examined my hands and feet. Re the swollen finger, he thinks he could feel some thickening of the lining of the knuckle joint and first joint in the finger (if that makes sense - I'm sure it was thickening of the lining that he referred to), but said it's always hard to tell on a simple physical examination. He was less sure about my toe pain but says it could be related.

The impression that both I and MrTeapot got is that he is leaning towards it being PA, rather than a simple tendon injury/RSI in my finger. If it is PA, it's at a very early/mild stage. He gave me two options. He said we could just focus on the fact the finger is causing me pain and practical problems and try treating that with a cortisone injection. He said he thought this would help and then we could monitor me and if anything gets worse in the future, do more tests at that point. My reading of this is that he was offering a "don't get a possibly upsetting diagnosis till things really set in" option. Second choice was to have an ultrasound scan now to see what's going on in the joint. If it shows tendon inflammation only then it may still be a straight tendon issue and not arthritis. On the other hand, if it confirms joint changes then it like is arthritis. He said the next step after that would still be the injection.

I opted for the scan. I'm the type of person that finds uncertainty worse. I just want to know what's going on, no matter what it turns out to be. I got the impression that the rheumatologist thought it was more likely to be early-stage PA than something more innocent. He kept telling me how PA isn't a terrible diagnosis, can be well managed for a long time, etc.

Ultrasound isn't until 5th April and then it'll be back to the rheumatologist once he's seen the results. The best thing is that I have complete and utter faith in the specialist - I could tell how many people with PA he'd worked with from how much he knew without even asking.

I just wanted to say thanks for all the support/advice last week. It really helped me prepare for the appointment and I was really glad that I took MrTeapot with me.

Ironically, the finger swelling went down dramatically yesterday after several weeks of being bad. My joints with issues have a marvellous habit of starting to behave when we're off to see doctors. :roll: So the finger isn't in as bad shape as it has been. Touch wood that lasts for a while!

tjt6768

Hi.. Glad that you have had a good experience with your first consult..
Best of luck with everything including the scan results, keep us up to date with it all..

Be well, and I hope things are not too bad for you tonight..

pinkteapot

Thanks... I slept really badly and feel upset today. :sad: Struggling at work (emotionally, not physically). Not really sure what to write as I'm feeling lots of things and am a bit all over the place.

keith1971

Hey Mrs Teapot.......

My advice if it does turn out to be PA is to start treatment right away. Mine started a year ago with a fat middle finger......but is now in my knee, ankles, right hand & other bits'n'bobs! I put off treatment until a few weeks ago & regret it now even though I'm still in the early stages also. Things seem to be stiffening up all over the place recently!

:roll:

pinkteapot

Hi Keith, I didn't know it could progress that quickly. :sad: I'll need to discuss it as we want to start a family. Just feeling a bit shocked and overwhelmed at the moment.