Confused - blood results good but pain worse

Wonkylegs

HI

well I had a much better day today so just hoping that I am on the way up and that tonight I get another good night's sleep - it really does make a huge difference!

I do take the Ibuprofen regularly, and I will talk to the rheumy nurse about my shoulders when I see her next week.

The only advice I can give about sleeping is to try the hot milky drink and maybe to use a lavendar mist to help too? Oh and to prop up the hurty bit s with pillows - I got another 4 as Christmas pressies :shock: so have plenty now

jackie1955

Hi Wonky,

Hope you sleep well again tonight hun zzzzzzzzz

Jackie x

chris7

Hi Wonky

Just checking to see how you doing. Am so pleased you are feeling a bit better today. Those flippin "hurty bits" can be such a nuisance at times don't they.
We still have oodles of dangerous icy pavements in my bit of Yorkshire, hope your thaw comes my way soon!
Really hope you have another good sleep tonight.
Take care, will hopefully see you in the cafe.
Chris

livinglegend

I had a long chat with my Rheumy about this some time ago. He told me:

RA is a progressive disease so it continually gets worse. The meds slow down the rate of deterioration but don't cure or prevent it. Flare ups are spikes in the disease where it suddenly gets worse and then returns to 'normal' for you.

With blood tests, it tests your blood at that moment in time. As there is a delay between taking the blood test and the results being returned from the lab, its always looking at what happened in the past, not the present or future. Because of this you have to look at the readings over a period of time to check whether the disease has slowed sufficiently and whether the meds are causing other problems.

All my readings are updated in a book which means that any fluctuations over a period of time show up. If any readings go high for longer than two months then I phone the Rheumy team.

I hope that this is helpful to you.

Joseph 8)

livinglegend

collywobble wrote:

Joseph, You say if any of your readings go high for longer than 2 months, you phone your rheumy nurse. Would that not be picked up on anyway, or is the responsibility on you to monitor the levels?

Also, I'm envious that you have a rheumy who will take the time to explain all that to you!!

Lynn

My GP checks the results when they come back from the lab and picks up on any high readings which are highlighted on the computer system. This is then noted in my booklet when I go for the next monthly blood test. There is also a note on my file that if readings are high for 2 months, then I would be called in to see my GP as a matter of urgency and after discussion I would then phone the Rheumy Team direct to arrange a visit to see them.

I can only comment that I have a really exceptional GP, Rheumy and Team who all have time for me. I wish everyone was looked after so well.

I am also taking part in ongoing research by the University of Manchester into causes/treatment of RA. If people get the chance to help in any research projects then please take part, if not for yourself then for others.

Joseph 8)

Wonkylegs

livinglegend wrote:

I had a long chat with my Rheumy about this some time ago. He told me:

RA is a progressive disease so it continually gets worse. The meds slow down the rate of deterioration but don't cure or prevent it. Flare ups are spikes in the disease where it suddenly gets worse and then returns to 'normal' for you.

With blood tests, it tests your blood at that moment in time. As there is a delay between taking the blood test and the results being returned from the lab, its always looking at what happened in the past, not the present or future. Because of this you have to look at the readings over a period of time to check whether the disease has slowed sufficiently and whether the meds are causing other problems.

All my readings are updated in a book which means that any fluctuations over a period of time show up. If any readings go high for longer than two months then I phone the Rheumy team.

I hope that this is helpful to you.

Joseph 8)

HI Joseph,

thanks for the reminder - I must admit that it is easy to forget what I do know when things seem to be going downhill :oops:

I must admit that it will be interesting to see what the bloods they did yesterday will show .... currently my bloods are being done fortnightly, and have all been going in the right direction for the past 2 months .... so that is reassuring. I wonder if the same will be seen with this lot?! :?

glad you have a supportive team - I too am lucky with my GP and practice nurse who are both great .... my rheumy is ok but the rheumy nurses are also fabulous, although very overworked so it is easy to put off ringing them about things that don't seem urgent.

I'll keep taking the tablets and see what next week brings

stiffneck

Hi Wonkylegs, I'm sorry to hear your'e in pain. My consultant told me at my last appointment that the blood tests cant accurately show how the disease is making you feel. I am badly affected by damp weather and low pressure. I felt great a week ago, but now that the thaw is coming and its damp, I feel awful again. I wish someone could explain why the weather has such a bad effect on me. from Stiffneck

Wonkylegs wrote:

HI, wondered if anyone else has experienced this?

It seems that the meds combo I am currently on is now working well - 15mg MTX injections and 10mg leflunomide have brought my CRP into the 'normal' range for the first time in years, and the PV is not far from the higher end of 'normal' either.

The thing is, although the blood results get better and better, the pain is getting worse and worse and I am wondering is it me or is this normal :? :? :? :? :?

I used to be able to manage with 3 doses of co-codamol during the day, with only one of these being the stronger dose. Now I find that I am taking the stronger ones most of the time, and most days I take all 4 doses that I can take.

today I have found myself counting the minutes until I can take some more.

Is this 'normal'???? :? :? :? :? :? :? :?

Wonkylegs

stiffneck wrote:

Hi Wonkylegs, I'm sorry to hear your'e in pain. My consultant told me at my last appointment that the blood tests cant accurately show how the disease is making you feel. I am badly affected by damp weather and low pressure. I felt great a week ago, but now that the thaw is coming and its damp, I feel awful again. I wish someone could explain why the weather has such a bad effect on me. from Stiffneck

HI Stiffneck,

I know what you mean about low pressure and weather changes - not good for my system either just something we will have to learn to put up with I think ..... don't think they know why it happens, just that it does. :roll: :roll: :roll: :roll: not for everyone though :? :? :? :? :?

hope you feel better soon
wonky

ichabod6

Hello Wonky,

Most of the replies on here talk about medication, but
moderate gentle exercise can also help reduce pain levels
Chapters 11, 12, 13 and 14 of 'The Arthritis Helpbook have loads
of information about exercise and I found them very useful.
I dont know if AC sell this book commercially but they provide
a copy at a fairly nominal price if you attend one of their
self=management courses.

annie_mial

I seem to be very lucky with my doctors, they rang me within 24 hours of having the blood taken to tell me there was a problem with my sodium levels.
I'm having another test next week - I'm on fortnightly tests - and it will be interesting to see what happens.......

Annie

Wonkylegs

ichabod6 wrote:

Hello Wonky,

Most of the replies on here talk about medication, but
moderate gentle exercise can also help reduce pain levels
Chapters 11, 12, 13 and 14 of 'The Arthritis Helpbook have loads
of information about exercise and I found them very useful.
I dont know if AC sell this book commercially but they provide
a copy at a fairly nominal price if you attend one of their
self=management courses.

thanks for the reminder - I'll dig my copy out and have a look ....... although I am keeping more active than I used to with dog walking and all the walking (and slipping and sliding) I'm doing instead of driving :roll: :roll: