Hello

Toots

Fingers crossed for you Amy (virtual crossing today) that the mtx continues to work well for you

My gp had said that if my bloods came back RF positive he could give me an all-round steriod injection in my bum - bollo, bolus something like that, I can't recall right now. But as my bloods came back negative he said medically he wasn't allowed to do so. Grr lol.

Last couple of days have been blooming sore all round. And it seems like when I'm having really bad days, I overheat to an awful extent. Does anyone else experience this? I'm presuming it's the inflammation that's doing it, but I'm toasting on and off and the slightest exertion makes me feel like I've been to the gym! (not that I'd know, don't think I've ever set foot in an actual gym haha!) It's either that or my age ....!!

Amy86

That sounds like the steroid injection that I got Toots. I have no idea what it was called but it was a general one, injected into my bum cheek and it was wonderful! I've since had an injection directly into my fingers and it hasn't made a fraction of the difference that the general one did. If I could have one of those every month I'd be in heaven!

I haven't noticed that my body as a whole is particularly warmer but certainly when my joints are really painful, they can get hot. My rheumatology physio advised me that this is due to an increased blow flow to the joint.

dreamdaisy

Ah, the drips. I get those all the time, the slightest exertion and I become sodden and soggy. I can 'melt' at the drop of a hat no matter what time of day. I now routinely take a fan to the supermarket to help cool me whilst waiting to pay - hands slick, hair plastered to my scalp, top sodden, what a beauteous picture I present for the checkout assistant.

I blame the pain and the meds. The sweats were worse when I was menopausal but they have carried on which can only be due to the drugs. DD

DebbieT

Yup I get them too. I'm told my meds are the main cause followed by fibromyalgia & being overweight!! I can't do anything about the 1st two n I'm fighting a losing battle with the 3rd I gained 3 1/2 - 4st whilst I was on Pregabalin!!

Do you think you have an autoimmune form toots? Sorry, my memory is shocking!! :? X

Toots

Amy86 wrote:

That sounds like the steroid injection that I got Toots. I have no idea what it was called but it was a general one, injected into my bum cheek and it was wonderful! .

Oh how I wish! I was gutted when my bloods came back negative! I had a steroid injection into my knee which actually made it worse because I had a steroid flare (apparently). Not to mention the injection it was the singularly most horrid thing I've ever experienced :shock:

dreamdaisy wrote:

Ah, the drips. I get those all the time, the slightest exertion and I become sodden and soggy. I can 'melt' at the drop of a hat no matter what time of day.

Yes! I have a fan next to me and it's on nearly all the time! I'm notoriously a cold person but have been lounging around the house in shorts and tshirt for months now, anything else and I feel like I'll pass out from the heat! I'm trying to remember if it was this bad before the Naproxen, but can't. These heat-exchanges will now be known as 'the drips' to me, thank you!

DebbieT wrote:

Yup I get them too. I'm told my meds are the main cause followed by fibromyalgia & being overweight!! I can't do anything about the 1st two n I'm fighting a losing battle with the 3rd I gained 3 1/2 - 4st whilst I was on Pregabalin!!

Do you think you have an autoimmune form toots? Sorry, my memory is shocking!! :? X

Not sure if I can blame meds as simple NSAIDs but whatever, I'm glad it's not just me. Although I am a little overweight, ironically I seem to have lost a few pounds recently, despite the fact I feel like my stomach makes me look 6months pregnant! It's a vicious circle I suspect with the inability to move versus weight loss, not to mention your meds. Hugs x

GP said he thought from my symptoms (synovial swelling/bursitis pockets at knee and both ankles etc) and the fact that I was a woman of a certain age (haha) that it sounded like RA. Bloods all came back negative, slight rise in inflammatory marker, but nothing major. Mild osteo in right knee (the only one checked at the moment), although I do have osteo in my hands which I always though odd - diagnosed with herberdens nodes before I was 40. Those parts of my fingers aren't bothering me funnily enough, it's all the other joints, and a cyst I have at the base of my ring finger.

DebbieT

I think mine is mainly antidepressants that they're blaming, I'm on a large dose of Nortriptyline :? Oh well.

U have no history of psoriasis? Nothing suspected now regarding it either?? There are other types, autoimmune ones like RA is. I hope they can narrow it down & diagnose you relatively quickly. Mine was such a no brained I feel guilty but lucky x

Boomer13

I carry a towel with me everywhere!! The sweating/cooling triggers my Raynaud's so I also have to carry extra socks, gloves, change of blouse, sweaters!! This is such a nuisance

I had it before I went on many meds so, I don't blame those and it's not meno, yet

My mum always said I was contrary!

Debbie, I guess you are lucky :?: but your skin involvement sounds awful to me.

Here's to not feeling like a sweaty reptile all day long!

Toots

DebbieT wrote:

I think mine is mainly antidepressants that they're blaming, I'm on a large dose of Nortriptyline :? Oh well.

U have no history of psoriasis? Nothing suspected now regarding it either?? There are other types, autoimmune ones like RA is. I hope they can narrow it down & diagnose you relatively quickly. Mine was such a no brained I feel guilty but lucky x

Nope, no history of any psoriasis or the likes. However, I do presently have a rash of sorts, can't really call it that. At the base of my outside palm (ie opposite side from thumb) I have a little row of the tiniest 'bumps'. It's almost like teeny teeny blisters but they seem to be underneath the skin surface, not on it. And I do mean tiny, smaller than your average pinhead. Not itchy or troubling me at all, I just happened to notice it the other day but to be honest thought nothing of it. Presumed it was from using the computer mouse or similar. Does this mean anything to any of you, or could it be totally unrelated as I expected it to be? Lol, hard not to assign every little thing to the same problem, but I wouldn't have thought to mention it at all.

Toots

Boomer13 wrote:

Here's to not feeling like a sweaty reptile all day long!

Hear hear! It's wrong of me to be pleased you're all suffering the same problem, right?

Boomer13

No, not wrong, just human; it's awful to feel alone in these things.

This has filled me with conflict too since I found this site. So many other sufferers, which is sad. Yet relief and gladness that there are others with similar.

The skin rash on your thumb, can you take a pic for your doc next visit or is it too small? My first, and diagnostic, patch of psoriasis was only a few cms. There are several different types. Mine is pustular, which is blister-type lesions within a larger thickened area. They can appear pus-filled but mine never do. Mine do not itch, but I have burning skin periodically. Might be worth showing your doc....Or, keeping a pic for your rheum appt.)

You're wise not to attribute every little thing to a potential illness. One can drive themselves nuts doing this!! (speaking from experience here )

xAnna

Toots

Boomer13 wrote:

No, not wrong, just human; it's awful to feel alone in these things.

This has filled me with conflict too since I found this site. So many other sufferers, which is sad. Yet relief and gladness that there are others with similar.

I totally understand what you mean. Every time I start to type 'oh I'm glad it's not just me' I wonder about what that says lol.

Boomer13 wrote:

The skin rash on your thumb, can you take a pic for your doc next visit or is it too small? My first, and diagnostic, patch of psoriasis was only a few cms. There are several different types. Mine is pustular, which is blister-type lesions within a larger thickened area. They can appear pus-filled but mine never do. Mine do not itch, but I have burning skin periodically. Might be worth showing your doc....Or, keeping a pic for your rheum appt.)

They really are very tiny, not sure if my camera will pick them up, but probably worth a try. I have already taken pics of knees, ankles and toes lol, just in case the bursitis etc has disappeared by the time I get to the rheumy.

Boomer13 wrote:

You're wise not to attribute every little thing to a potential illness. One can drive themselves nuts doing this!! (speaking from experience here )

xAnna

Yeah, I'm still at that stage where I'm reading up lots of stuff on a variety of ailments, trying to garner more information and resist the temptation to grasp at new symptoms at the same time!! I don't want any of them, perhaps I should stop googling lol!

Toots

Apologies in advance - more questions keep coming to me, and I'm trying to note down things that I must ask gp/rheumy when I see them.

To recap, I have bursitis pockets at each of my ankle bones, swelling hasn't gone down any in the 3 weeks or so I've had this. Today I've noticed that I have swelling towards the back of my ankles (side back, if that makes sense). It's not bursitis type swelling, more like my muscle perhaps? Which has confused me somewhat, as I didn't think muscles themselves were involved. Perhaps I need to do some more reading up, but does this sound expected to any of you?

Also, I mentioned this to previous gp, but we got sidetracked as I was reacting weirdly to the steriod injection and had to lay down for a bit. When relaxed, my toes kind of point up the way. It's like the ligament (?) connecting to my big toes is too tight and pulling them up (worse on one side than the other). Also seems like my big toe joint is more pronounced (sticky-outy) and big toe seems to be getting cosy with next toe over!

On my hands, my pinkies seem permanently bent and each of my index fingers are 'twisting' and also getting cosy with middle finger neighbour.

I guess what I'm asking is whether anyone has had experiences of these things so that I can take note and be pushy with gp/rheumy if I have to.

Thanks in advance, I'm sure I'll run out of silly questions soon enough ;-) I do value your kindness and information - I won't start worrying about what I might and might not have, cos let's face it, they're all just as bad as each other lol, but I like to be forearmed with info if I can x

stickywicket

I'm not going to be much help to you, Toots. I've never done stuff in so much detail. As I see it it's arthritis and that's what it does. When a new bit of me joined the party I'd mention it to my rheumatologist at my next visit. If stuff hurt I'd see the GP. Maybe I take too simplistic a view but it's worked for me for a long time.

Toots

Thanks for your reply SW. I understand where you're coming from. I just figure that since my bloods are negative, it's going to be harder to get a firm diagnosis and I think the more 'pointers' I have to detail to the rheumy the easier it might be? I'm naturally inclined to gather info and ask lots of questions lol, but perhaps I'm being too particular, I don't know. x

DebbieT

Toots I'd look up psoriatic arthritis of the hands & feet, please remember that they show pictures of the disease at its worst tho, as it does effect the toes, fingers & ligaments!!

My hip bone, the butterfly wing looking part, has a circular area thats worn very thin from tendon/ligament swelling then it rubbing across the bone & wearing it away. Much of my damage has been done by this :?

I hope that may help.xxx

stickywicket

Toots wrote:

I just figure that since my bloods are negative, it's going to be harder to get a firm diagnosis and I think the more 'pointers' I have to detail to the rheumy the easier it might be? I'm naturally inclined to gather info and ask lots of questions lol, but perhaps I'm being too particular, I don't know. x

I apologise, Toots. I've not been around as much as usual and I'd forgotten it was your first visit. Yes, get all the info you can and maybe list the problem areas briefly and take photos but then let the rheumatologist do the diagnosis ie whether something is or isn't bursitis.

I hope it goes well.

dreamdaisy

It is a danger that us older hands at this malarkey forget just how bewildering and confusing it all is when one is in the early stages. Having had a history of life being less than wonderful when my PsA began my only thought was 'Ah, normal service has been resumed' and that hasn't changed. I did go through a phase of measuring my very swollen left knee both prior and post-op, but when the other started joining in I gave that up.

Another danger is that it is easy to become almost obsessive about what is happening to us and what might be causing it. This increases the circle of anxiety which in turn feeds the disease which in turn is not helpful to us, albeit very understandable.

It's not easy Toots, far from it, but if you can it may be an idea to ease up on the research: there is a great deal of false information out there and even if you do end up knowing everything about it it won't help with the day-to-day business of living with arthritis. I know what I have and why I have it, I know what is going to follow but maybe not when, but I reckon that is all I need to know. I am more than arthritis, my disease does not define me. You are on your own with this but not alone, there's a subtle difference. DD

Boomer13

Hi toots;

Not sure I can add anything useful here to the other replies.

You may not get all the answers in your first rheum visit but a good rheum will note all your subtle signs; swellings, digits drifting, twisting fingers and toes, bony prominences, etc. Mine noticed things that I was so used to seeing I hadn't put together with the disease. Then, other things you notice will have nothing to do with disease.

I researched like a mad woman before my appt and, in the end just let him do his job. I realised as much as I can research on my own, I'm always just following along with my docs regarding diagnoses, drugs info, etc. I value what I've learned/researched, but I still rely most on my rheum for his invaluable training and experience.

You should diarise your flares and new symptoms that crop up and what triggers flares, if anything, but a rheum (well, a good one) will notice your signs (the things visible you mentioned). You need to be in charge of reporting your symptoms (the subjective things that you feel). This will include things like how you respond to sulfasalazine. I found it useful to know the difference in doc-language between 'signs' and 'symptoms'.

You may have to get a couple/three rheum visits in before he/she has a good picture of what's going on with you. I've had five and he's still figuring it out, and we haven't even tackled my muscle/nerve problems yet and those may not even be related to the PsA. Trouble is these are very complex diseases and each have a unique expression in the individual. I have trouble digesting the individual nature of these diseases in the person, but it is true they are somewhat different in every person. Tough when you want clear-cut answers immediately!

Have a good weekend, hope I've made sense here and, hope you are not too worried.
xAnna

Toots

stickywicket wrote:

I apologise, Toots.

You have absolutely no need to apologise SW, I can understand that by this stage you are probably a bit jaded by it all. Which makes it all the more appreciated when you and everyone else takes the time to answer newbie never-ending questions. Hugs xxx

dreamdaisy wrote:

Another danger is that it is easy to become almost obsessive about what is happening to us and what might be causing it. This increases the circle of anxiety which in turn feeds the disease which in turn is not helpful to us, albeit very understandable.

Thanks DD, I totally get what you're saying. Of course right now it's the first thing I think about when I wake up as I'm so stiff and sore, and when I go to bed as finding a comfortable position is a challenge. Or go to the kitchen, try to do the dishes, let the cat out etc etc etc. I've been totally incapable of even straying across to the local shop lately as the pain in my ankles is awful and just putting on shoes makes it worse. In turn, I haven't been at work and therefore am not being paid. So yeah, I know I'm feeding whatever it is with stress, but it's a vicious circle at the minute that I can't seem to break.

I've tried to stay on reliable online sites, but yes, a little information can be a dangerous thing, I know I probably need to ease off, you're right. Hugs xxx

Boomer13 wrote:

I realised as much as I can research on my own, I'm always just following along with my docs regarding diagnoses, drugs info, etc. I value what I've learned/researched, but I still rely most on my rheum for his invaluable training and experience.

Yes, I know you're right, that's what rheumys are there for, but being here and reading everyone's stories makes me realise there are many of you years down the line without a proper diagnosis. That said, after some reading today, I appreciate that the treatment is often the same, regardless of which inflammatory arthritis is the culprit, so I suppose in the grand scheme of things it doesn't really matter.

Boomer13 wrote:

You may have to get a couple/three rheum visits in before he/she has a good picture of what's going on with you. I've had five and he's still figuring it out, and we haven't even tackled my muscle/nerve problems yet and those may not even be related to the PsA. Trouble is these are very complex diseases and each have a unique expression in the individual. I have trouble digesting the individual nature of these diseases in the person, but it is true they are somewhat different in every person. Tough when you want clear-cut answers immediately!

This. So much this. I don't think I've quite got my head round the fact that even though it'll be weeks before I see rheumy, it could be months and months down the line before .... before what? I have no idea. Before diagnosis, before medication that works, before having a better idea of what the future has in store for me? I feel like I'm on hold. Like huge life-changing decisions made last year might have to be quashed, or not, because I don't know.

I'm sorry Anna, and everyone else, I feel I'm rambling now, not even sure what it is I'm trying to say. Tired and sore. I think perhaps something nice and yummy might be in order to distract me from myself! Off to find an icecream. Thank you all so very much for your posts. Hugs xxx

Boomer13

Don't apologise for rambling toots. Better to ramble a bit than to sit and stew over things. There's no doubt it's very difficult to cope with all at once. Sometimes you just have to focus on one day at a time. Difficult to think of anything except what's wrong when your various body parts are screaming at you. It's a real b@*g*#r!!

We all wish things were better, quicker in the rheumatological field, but it's still better than the generation(s) previous. Cold comfort maybe?

Hey, I'm looking for ice cream too, today!
((())) Anna

Toots

Thanks Anna x

I apologise for my mini-melt-down lol. Yesterday was one of the million-hot-stabby-needles-pain days, back to 'just' aches today so a little more together. I haven't been over the door in a week and am going a bit stir-crazy. A previously planned get-together with friends travelling from various parts of the country is scheduled for tomorrow which I'm stressing over a little, but they know I'm not as mobile as usual and seem understanding. Now if I can just get myself to the bus stop, the remainder of the day is to be spent in the pub (I won't be drinking lol) and I know they'll lift my spirits.
Think I'd better force myself to toddle over to the local shop today to get my legs working again!

Hope everyone is having a good day (and you got your icecream Anna!) xxx