how do you tell the difference?

[manda31]

It can be so frustrating sometimes. I felt like I really took it quite easy today. My daughter and I bought some flowers to plant in the garden but I made sure we waited till late in the afternoon to do it...when the sun wasn't so high. I was okay for a while.

Then about an hour later I decided I would throw the frisbee with her a bit...ten minutes later I felt sooo sick.

Face was flushed red, feverish, headache (almost a migraine) and I felt so weak and nauseous (sp?)

I guess my question is was that Fibromyalgia or the Lupus symptoms?

So hard to tell when doctors don't even seem to know exactly what is going on.

I'm feeling a little better now after just sitting for the last hour, drinking water and popping a couple paracetamol but still feel flushed.

Anyways...

Amanda

[manda31]

Well I don't think its the Fibro LOL

The paracetamol didn't seem to last long...becoming more feverish and flushed now and its only been a couple hours :( Feeling nauseous again and a pain in my side near my back seems to be coming back...only notice it when I breath deeply. errrrrrrrrrrrrrrrrrrrrrr

I'm so tired of feeling sick all the time...at least the Plaquenil seems to be keeping my joint pain under control.

Amanda

[manda31]

Sorry to keep rambling on...I guess I'm just working this out in my head...

My joints were sore yesterday and my hands were all swollen and puffy...I wonder if this was a precursor to how I'm feeling now...

Does anyone else ever get puffy, swollen fingers? It seems to happen every so often to me, but I never thought it was related before now.

Amanda

[neongirl]

I do, usually before a flare or something happening with my kidneys....watch yourself closely just in case. I might add that my feet and ankles get puffy as well.

[Pollyanna]

((((((((((((Amanda))))))))))))

Sorry to hear you are not feeling 100%. With me, when my hands and feet swell and ache...it is the beginning of a lupus flare. The only thing I can suggest is rest, rest, rest.

Hoping this isn't the case for you! :blush:

Love and hugs, Pollyanna :love:

[manda31]

Thanks for responding Neon and Polly :)

On the subject of swelling...my ankles have been puffy and swollen off and on for the last few months too. But also...and this seems strange to me....in the evenings when I ready myself for bed I notice that after I take my socks off (I wear those short little ones) my lower leg is all puffy just above where the sock was.

I guess if is my kidneys it will show up on the blood work my Rheumy did on the 19th. No one has ever checked my Renal function before now, but I guess after seeing how well the Plaquenil was working he's wondering more about the Lupus.

I wonder if I should see my GP....I don't see my Rheumy again till July.

Definitely going to take it easy today.

thx,
Amanda

[LolaLola]

Hello Amanda,
Were you wearing sunblock in the garden? You sound just like me after 2 mins sunlight. Doesn't have to be blazing sunshine.
Yes, my ring size has gone up two sizes due to frequent finger swelling. Ankles swell too but kidneys okay.
xLola

[Lily]

Hi Manda :hugbetter:

On the subject of swelling...my ankles have been puffy and swollen off and on for the last few months too.

I think if you arent due to see your Rheumy until July then its a good idea to see the GP and at least get him to run a urinalysis (especially as it doesnt sound like thats been done yet?) If there are any problems with your kidneys that will show it up much sooner than a blood test. The doc should be looking for blood and protein casts. The above symptoms indicate thats a possibility but by no means the only cause for it. Best to just check as you have a long wait ahead of you before you see the specialist.

I hope you start feeling better soon. Best to wear sunscreen and a hat at least if you are out in the garden. The sun can bring on flares, some quite serious for Lupus patients. The signs may not always be obvious either. This sounds like your body is trying to give you a warning signal.

love
Lily

[Clare.T]

Please, please, don't tell me they have never tested urine !

I wonder why they say you are pre-lupus, but at least they have you on Plaquenil. I think any new symptoms and especially recurrent should be recorded. They are treating you for lupus but they might be more willing to consider that you need something more.


I am bothered by swelling already this year. It used to be only when it was really hot.
I get that indented sock line quite shockingly. I have worn only socks - knee highs except they rarely come right up to my knees - for over ten years now, by the way, and see that that I have lots of little purply marks, cracked up little veins and splodges below the sock line. Petechiae and purpura probably. The meds I take all have slight blood thinning properties which no doubt contributes to this unsightliness. Being big is one thing, swollen another, but purple splodges is the last straw

So I take them off at every opportunity and I am changing to stay- up stockings - I need some disguise for my horrible feet and lower legs. I have an extreme aversion to toes anyway so the last thing I want to look at are my own.

I am seeing doc this week for annual meds revision and check up. It's soon 3 months since my annual rheumy check up. The rheumy wrote that I should have regular urine tests and I also have them for liver and blood abnormalities mainly because of the Imuran.

Cheers
Clare

[Pollyanna]

Why Clare, I do believe I learned more about you in this one post than I've learned in the past several years! :wink2:

But I'm with you on the feet - ugh! :eek:

Amanda, when my right ankle started to swell and stay swollen (just the right one now) it was said to be of "idiopathic" origin. Granted this was before lupus diagnosis, but it's been that way for 15 years or better. My old doc told me that idiopathic is what they (the doctors) call it when the idiots (the doctors) can't figure it ou!

Be smart with the sun! Love, Pollyanna :love:

[manda31]

The Rheumy I'm seeing now is actually a new one...I just moved in December and had to change all my doctors :( So my first appt with this one was just in February and at the time he really didn't think anything was wrong with me...as least that was the impression I got. He even went as far as to insult my doctors from London.

And yes, he's never done a urine test!!!!!! When I saw him in February Plaquenil hadn't started working (my rheumy in London put me on it last Oct) but when I went back just on the 19th the Plaquenil had started to work --- so I think he's re-thinking it all now. I actually felt like slapping him up side the head LOL

He still thinks I have Fibromyalgia (which I'm not convinced of) but now he's thinking it might be Lupus too. My liver is being affected too but somehow the Plaquenil has been helping to bring the inflammation down - its helped with my joint pain too. My latest blood tests showed that all my levels (ANA etc) are going down finally. None of the specific antibody tests for Lupus have been positive though - so I think that's been the delay in my diagnosis.

The only thing that has been conclusive is my ANA was not normal and I've been steadily getting sicker over the last 4 years. Thank God the Plaquenil has started to work - I was in so much agony in February that I seriously thought about going to A & E on several occasions.

But yes I've noticed that anytime I spend time out in the sun I seem to get sick either later that day or the day after :( I guess that started happening at least a year ago. I always thought it was just the heat - which I don't handle well - so I've never been very interested in going out when its hot. Not to mention that my eyes are very light sensitive 8) - so I actually like cloudy days LOL

Anyways....I made an appt with my GP this morning for Wednesday, so I'm going to tell her about the latest symptoms and have her do a urine tests. That way it will be in my file too when I see my Rheumy next time.

And I'm going to get some sunblock today!!

Ironcially, and you'll find this hilarious - I told the Rheumy that my liver has been out of whack and he totally disregarded it. So....I had my GP run another series of Liver tests...because I hadn't had any since starting Plaquenil...and that's how we found out its been getting better :rotfl: Then the Rheumy tells me it might be related LOLOL Who's the doctor here??

Amanda

[manda31]

Sorry, but on a side note....if there is something going on with my kidney's I wonder if that has anything to do with my uric acid levels.

Back in London (in Aug 2006) my Rheumy actually diagnosed me as having Hyperuricemia...my levels were very high but they didn't know why and didn't seem concerned at the time.

I think I'll request a re-test of that too on Wednesday.

I just wanted to to say thanks too. You are all wonderful and supportive!!

Amanda

[halfpintfl]

Hi Manda, I find that in a LOT of cases fibro crosses over the lupus line,. this makes distinction very hard, but I truly believe this and I first got the idea from my Rheumy b/4 he ever dx me with lupus.
Just rest and do nothing and baby yourself today and maybe tomorrow,and let us know.((((hugs)))))