flare up v inflammation

debram

My inflammatory markers are within "reasonable" limits but my pain and stiffnes is awful.
Whilst my consultant and hospital are fab-it does seem to be all about inflammatory markers.
I feel tired most of the time and have awful pain but my Gp said my inflammatory markers are ok so manage with pain killers. I was told by the hospital he could give me a steroid injection which helps more.

What's other people's experience?

Thanks x

Boomer13

Hi; I've never had much elevation in inflammatory markers. My docs go with how I'm feeling and visible inflammation. I have PsA, spondylitis and take triple DMARDS. It is still uncontrolled.

I can't remember, is it RA you have?

Best wishes,
Anna

dreamdaisy

I've had low inflammation markers with much pain and high markers with reduced pain. I agree that the emphasis does seem to be on what the bloods are showing because that is the evidence that the meds are working. I know that my triple therapy is controlling my PsA but my joints belie that hanks to the OA. Sometimes one cannot win. DD

stickywicket

My experience is just lile DD's in that there's not necessarily any connection between disease levels and pain. However, when the pain's been very bad I've always had it checked out.

bubbadog

My GP & Consultant always start a conversation with your Inflammatory Markers are showing.......... yet I may be feeling rubbish. My G.P is great and will go along with how I'm feeling but my Consultant will mostly wonder why I 'say' I'm not feeling so great while my Inflammatory Markers are good! I usually have to pretty much fight for him to listen to how I'm feeling which can lead to me feeling totally drained when I leave his room.

debram

Thanks for replies guys! . so I'm not going mad!! I'm not the only one saying to her Rheumi-I feel rubbish when they say inflammatory markers Ok!!
sorry you guys suffer but it's really nice to know I'm not alone!
Anna yes I have Psa in most of my joints and osteoarthritis In my knees spine and hips-that burns inside and caused pain in my hip & buttocks but of course that's not.visible either.

Another thing is that I have at least 2 days a week when I can't get out of bed with fatigue-I haven't felt anything like this in my life until two years ago when it became clear that it was part of my Psa. Every day theres pain somewhere!
I haven't got the energy to get up and have a wee! how do you cope with fatigue guys?

My hands at the moment are hopeless. No significant swelling in joints there they say at the time of assessment but my knuckles come up like they're little balloons-I can watch them "inflating" and the pain is a burning sensation inside and they're red outside!
Don't know what to do with them and as for gripping anything-forget it!

My sister in law grabbed my hands and squeezed them as she greeted me-I nearly hit the roof & it brought tears to my eyes!

Surely that's inflammation Mrs rheumi!!

LET'S KEEP SMILING!<3 XXXX

dreamdaisy

May I have your version of PsA etc. ? I kid you not, every day takes an indecent amount of effort just to get out of bed and as for the wee thing - we moved and now have an en-suite which is only fifteen bone-crunching-crutch supported paces away but . . . . . . my friend Lindypops was (for once) right. It's not how far you have to go, it's the getting up which sucks (and she's revoltingly healthy).

Arthritis. It's the gift that keeps on giving and it will do what it pleases despite our puny efforts to fight it. Hey-ho. DD

stickywicket

debram wrote:

Another thing is that I have at least 2 days a week when I can't get out of bed with fatigue-I haven't felt anything like this in my life until two years ago when it became clear that it was part of my Psa. Every day theres pain somewhere!
I haven't got the energy to get up and have a wee! how do you cope with fatigue guys?

At the risk of sounding quite cruel, not by staying in bed. I think that's quite counter-productive. Yes, there are days when I do the minimum - not that the maximum is hugely different - but I do feel better once I start to move around and it has to be better for the joints to keep the muscles moving. It can be tough but, I think, worth it.

bubbadog

Funnily enough my next door neighbour who 'helps' me during the day says you mustn't stay in bed if you don't feel good otherwise your body will seize up. She makes me get out of bed and gets me dressed but the crazy thing is Sticky and my next door neighbour are right. You do feel a little better for getting up and moving around a little!

debram

Point taken guys thanks!
When I have those days I must still do my exercises at least -I know that it's important to keep moving -it sounds like I'm lazy & I guess I'm giving in or giving up too easily.
I went to clinic yesterday and discussed it-she said the new injections
I've also been diagnosed with depression & I discussed the fatigue with my phsychologist. I do let the pain take over but she's doing cognitive behaviour therapay with me so I can manage it and not let it take over.
I'll make sure I keep moving.

deb x

barbara12

Hello debs
Sorry to you are suffering like this, you are not alone on the markers..but also not alone on letting the pain get the better of you...its a real bully is pain like you are having...I know its never easy but you fight back lovey..the psychologist should be able to help..depression is quite common on this forum..not surprising..you look after yourself and please let us know how you get on...((((())))xx

dreamdaisy

I plunged into a black mood when my OA was diagnosed so I was put onto citalopram. I only wanted it for a short while but my rheumatologist told me to stay on them because (as her reasoning went) if I was feeling brighter mentally I would cope better with the pain. She was / is right. Given all we have to deal with it's no wonder that we mentally struggle from time to time - why not help our minds with meds in the same way we try to help our bodies? DD

debram

Thanks both-I'm on Citalopram-yes I agree.we nee to heal our minds too. it is a lot to deal with. I'm wondering If I should speak to the Gp as I seem worse at the moment. Anything that doesn't go to plan freaks me out-even stupid things like a lift to the hospital being 5 minutes late. I get in a right state!
For the first time in my life I dreaded Xmas-the expectation to see friends and family and "be normal" I was exhausted-did my shopping on line and got my daughter in laws wrap prezzies. All I wanted to do was sleep-I normally love Xmas but glad to see 2013 gone!
I guess not sleeping at night is adding to the fatigue too-I can't wait to get on my memory foam bed but pain keeps me awake then I wake every couple hours. don't know what it's going to be like from one night to the next.

It's s so reassuring to "talk" to you guys-thanks xx

dreamdaisy

I have had years of broken sleep so I can truly empathise (and what exacerbates it is a quietly snoozing spouse alongside). I dreaded Christmas for a few years because that was when our elderly mums came to stay and the pressure was, well, difficult. Now we have the perfect house for elderly Mas but they are no longer around.

It is far from easy to adjust to our new arthritic situations (those around us find it hard too) and the stress that this can cause just makes everything worse. I have one advantage - being an only child I am perfectly used to being what others call selfish but I deem reasonable so maybe it's time to find that inner 'only child' within you. Come and talk to us, we're always here and we do understand. DD