[jo191070]

Been to my first rhumey appt today, she dosen't think I have SLE as my white cell count was raised as well as my ERS (which my GP said was'through the roof'), so the day I seized couldn't move and was in excrusiating pain, was just an infection or virus!!!!! She has taken more bloods, back in 6weeks, done some xrays, and will contact me if anything significant shows!! Gave her a list of symptons & a pain diary since Nov 07, as I have distrupted sleep she says I have Fibromyalgia, which I was already diagnosed with since 2003!! Since my major flare up in Jan I have been in pain daily, sometimes I can't even getout of bed or wlk up the starts, she thinks this is a coincidence!!!! or he way my brain precieves pain!!! I got really upset so she thinks I should up my dosage of anit depressents!! She is however getting me to go to physio, which she informs me will make the pain worse for the first lot of sessions. :worried:

 

[Taree]

Hi jo

So sorry to hear you're having such a difficult time and then to be in so much pain on top of it all!

I hope you get answers and feel better soon!

X T X

 

[Katharine]

Hi Jo,

Yes, that kind of appointment can be extremely frustrating. I had a couple which were pretty close to that and left me with the impression that the rheumy wasn't taking things seriously at all.

Seeing her reports to my GP later, I could actually see that she was, it just didn't seem so at the time to me.
The good thing is that you are getting all the necessary tests done and you are going back in 6 weeks.
I would say that you'll just have to be patient until then and see what happens. Beyond that, if you are still unhappy it might be worth trying to get a second opinion even if you have to go privately initially to get some answers.

I'm sorry I can't help more,
Katharine

 

[Joandublin]

Hi Jo

As first appointments go your one is pretty much about average Im afraid. Its almost an exact replica of my first appointment for example.

Dont be disheartened. She is seeing you again in six weeks, has ordered blood tests and xrays and is sending you for physio. My appointment was exactly the same except that I was told to come back in six months!

Long story short, when the results of my blood tests came back they sent me out an earlier appointment. It was still eight weeks in between both appointments though.

Can you talk to your GP about some pain relief in the meantime? A lot of us have had to rely on our GP for symptom management, especially in the pre diagnosis days. Indeed having a good GP working alongside you is worth its weight in gold.

Please talk to your GP and see if he can help with pain relief for you.

Take good care
Joan:rose:

 

[Maia]

When I had water physio a few years ago... the physical therapist was very careful with me to start off very slow and build up slowly. The whole goal was to NOT make me worse the first few sessions. You may want to be sure to discuss this with whoever does your physio with you.

It does sound like a typical first appointment. Mine wasn't quite like that as my GP had run all the bloodwork (through uni lab) so the doctor had everything he wanted run in his own lab already so was placed on medication promptly. But the fact that bloods were taken, and xrays, and sending you to physio does suggest your symptoms are being taken seriously at least. But you still walked out feeling like you don't have answers/solutions, which is probably the most frustrating feeling of all. it does feel sometimes like they fall back to depression causing things all too often...

I have heard the "how your brain perceives pain" bit as well. Very frustrating but there is actually a scientific basis to it. I recently read a news article that showed chronic pain patients brain's function differently on functional MRI's than people without chronic pain while performing basic tasks even. The problem remains what to do about it - & whether it is treatable with any medication.

(((hugs)))

 

[jo191070]

Thanks, feeling very sorry form myself at mo, upseting my hubbie,he trying to cjeer me up but im not in the mood for amy cheering up, he is very good and understanding but he doesn't understand how I feel, anyone else with this problem???

 

[Maia]

Oh yes. My husband is a real gem, and I know that and appreciate him. He shows how much he loves me and cares about me through his actions like making supper, doing all the yard work (& did all housework b4 we hired a service), etc. etc. etc. But he is just plain not good in the emotional understanding part of things. With him being healthy as a horse 99.9% of the time I know it is very hard to understand what life is like for me & that does frustrate me sometimes that I don't get a feeling of empathy from him. But I know I would rather have it this way than him being able to talk a good talk but not show it through his actions.

 

[halfpintfl]

Hi Jo, sorry that you are feeling so low right now. Before we moved back home to Florida, we lived for eight yrs, in a small,small town, where I swear that every doctor that graduated at the bottom of his class worked. It took them
six years to say that they would treat me with pain pills and sleeping pills, even though in their opinion all that was wrong with me was arthritis!!!!We came back home and I was diagnosed with Fibro right away. You are having tests run, try to rely on your GP for meds. and keep a pain journal. I wish you the best. Keep posting. ​