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Hi everyone

Thought I'd register to ask a few questions! I haven't been diagnosed with lupus, although my mum was diagnosed last year.

I was referred to rheumy in 2000 and had loads of ESR tests done which were high, but eventually rheumy said this was due to recent pregnancy. After loads of tests and feeling like a hypochondriac, he finally diagnosed fibromylagia in 2006.

However, I'm now not sure what I have! For some time now, I've had a strange feeling on my face where the butterfly rash would be - below eyes and over nose. I can't see an obvious rash, though after putting some washing out, I now have a couple of itchy spots. The skin feels like it's sunbunrt but it isnt. It looks very slightly flushed, and has done for months. During the winter when I went out in the cold wind, the areas would end up quite sore. At the moment it's not what I would say as sore, just feels a bit weird.

I have muscle and joint pain (hips, wrists, fingers, knees, ankles, basically everywhere!), extreme tiredness, and constantly feel run down to the point I do feel a bit depressed :( and lack of concentration.....plus other things that I can't remember at the moment lol.

do you think it could be lupus? I know there's the genetic thing as well so there's the possibility of having it as my mum has it. And if I do actualy have fibro, could I get lupus as well? I don't want to go to GP as I've had enough of loads of testing to be told everything is normal!! I notice most people have a 'real' rash that is raised and itchy, mine isn't a proper rash in that respect though the flushed feeling across my cheeks and nose does sometimes itch.

Thanks in advance
 

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Hi madcow and :welcome:

It's true that some people only get a blush where the malar rash would be. It doesn't have to be raised, mine never is I don't think. However when flaring it really is very noticeable and not just a blush. It also burns, feels scalded.

I hate to say it but it is possible from your symptoms that there might be more going on than Fibro. Time for more testing. I would see if your GP can run the basics and even if they come back ok I would go see the Rheumy again. The GP is unlikely to run the extensive testing needed in order to rule it in or out, you need expert eyes on it. I would get the GP to do a urinalysis though as well as say and ANA, ESR, CBC etc.

If a parent has Lupus then there is a slightly increased chance of their offspring getting it too, but it's only something like a 10 percent increased chance I think. So it's not a given.

Good luck and let us know how you get along.

Take care and take precautions in the sun, sunscreen, hat and stay out of it between the hours of 10-4 if possible.

love
Lily
 

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Hi there and welcome to the site

Yes it is possible to have both Fibromyalgia and Lupus. Approx 30% of those with Lupus also have fibro so its quite a high number. I have both conditions and like many people was diagnosed with Fibromyalgia before the Lupus. Actually once the Lupus was diagnosed I thought perhaps the fibro diagnosis was incorrect but it turned out that the two conditions were present. It has taken me quite a while to try and figure out what condition is causing what symptom :rolleyes:

It seems to be quite a while since you had some testing done - 2006 if Im reading your post correct? I certainly agree that its time to go back to your GP and let him/her know how unwell you are feeling. Its certainly not unusual for people to present with clinical symptoms of Lupus only to find that their bloodwork takes a while to support the diagnosis.

Start today by keeping a diary of your symptoms and make an appointment with your GP. You need the support of a good GP to help you figure out what is wrong and its important that you dont allow yourself to feel awkward or embarrassed simply because the tests you had many years ago turned out normal.

I was wondering also if you were put on any treatment for the fibro? There are a few drugs which are specifically approved for the treatment of fibro such as Amitriptyline, Lyrica or, more recently approved, Savella. I think the latter is not yet available but is due this year.

I wish you the very best of luck if your health journey and if we can be of any more help please dont hesitate to ask. Remember, its YOUR body and you KNOW something is not right...

Take good care
Joan:rose:
 

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Hi,

Thanks for your replies.:)

I haven't been out the door today, so face isn't as uncomfortable just now. The scalding description is exactly how my face feels. At the moment, it's not very flushed looking, though does feel flushed under the skin. I do have some tiny thread vein things on my face so that makes it a bit harder to decide just how flushed I actually look. I'm ususally quite pale anyway, but it does look slightly flushed.

My last lot of ESR tests were during 2000, my first appointment with rheumy was when my daughter was 2 weeks old. For quite a while the rates were raised, but did start to level out. rheumy eventually said that pregnancy can cause raised ESR levels, so he started loking for other explanations for the way I was feeling. I had loads of blood tests done, and went through various suggested causes - inflammatory joint disease, RA, inflammatory arthritis, but as each test came back normal he was quite stumped. Eventually he did the tender point test, which I found most of the points painful, so he said I have fibro. That was in 2006.

I was on amitriptyline for a year or so but after a while came off it as it had stopped being beneficial. Since then I've just plodded along, and I guess I've built up quite a high pain threshold, though some days are pure agony. I was also on Calcichew for a mild Vitamin D deficiency, but stopped taking them, as they just 'lay' on my stomach and made me feel constantly sick.

I know it's time to go back to the GP and get back on meds, and ask for another referral, but can't face anything at the moment. I've lost a lot of confidence over the last 2 years, and at the moment feel a bit down, so know I need to see GP for an anti depressant, but deep down I don't want to accept I have any illness, I never have and try to deny it and ignore my symptoms. But it's now affecting my relationship with my partner, as I'm getting very over-sensitive and have lost what once was a good sense of humour. Now, with this scalded feeling on my face, I am scared that it is lupus, and scared of how I'll cope, my partner can only understand so much and often tries to reassure me by saying I'll be fine, everything will be fine, but I don't feel that way. My family aren't nearby, and partner's family are too busy with their own lives and health issues (or the made up health issues!).

I just want to be normal :( and want to be happy again! Part of me wants to find out if I have lupus as well as the fibro (or instead of, whichever) and part of me would rather stay ignorant.

Thanks for your responses, be prepared for lots of questions and worries as I embark on testing and results!
 

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The Other Illinois Tammy
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Hi and welcome to the site. I do hope that your mom is getting all the help she needs. She is always welcome to come and join the site if she needs someone to chat with. With that said you could develope lupus. I was told by my dermy that it is unlikely for a child of a lupie to develope it but have found out different at this site. You should be monitored for signs of lupus developing.

The fibro is close to some of the lupus symptoms, so yes it could be that you are misdx and if this is your feeling a second look would not hurt. I know all the tests can be a bit much but without them it is very hard to dx lupus. If you get a rashy looking outbreak else were on your body they could do a biospy to see if it is lupus. I have not had positive blood work the whole time with my lupus, mine was found with a biospy. I hate the term mild lupus as there is nothing mild about lupus. My advise is to keep a close watch on your symptoms and report changes to your doctor and submit to the tests so you have piece of mind for yourself.

I do hope that you feel better and stay lupus free for the rest of your life.
 

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:hug: It's a shame you haven't kept up with the Vitamin D. Do you know how much vitamin D was in the supplement you took? How severe your deficiency was?

I'm not discounting your other symptoms but Vitamin D is a very important Vitamin for the immune system. I had a very severe deficiency when first under investigation prior to Lupus being diagnosed. My levels did come back up after 6 months supplementation and have stayed ok since. My doc at the time explained how important it was to the immune system functioning properly and how a deficiency can cause bone aches and pains, depression and the list goes on and on. So it's worth retesting that and if deficient trying to find a way to get your levels back up. For starters..............you will still have to get things checked out, but who knows it may help you more than you think.

Try and take one day at a time, don't worry about the what if's after all you may not have Lupus, but I do feel it's important to be investigated again. You owe it to yourself and your family :hugbetter: If it turns out you do have it then all is not lost, things have come a long way treatment wise and also everyone is different. A great deal of people once meds are started and with a few minor life-style adjustments do very well. Don't take the population on this board as being indicative of your average Lupie :wink2: the average Lupie is out there well controlled with meds and living their life :)

love
Lily
 

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Hi Lily,

The Vit D test I had done was 6 weeks before the fibro dx. I'd had the bloods done by rheumy but got a letter from GP asking me to get another test done (a comparison test?) and a few weeks later I was told I had a mild Vit D deficiency. I did take the calcichew tablets for about 6 months but felt queasy constantly as they just lay on my stomach, and also didn't feel any benefit for taking them.

I have been suggested a rheumy not too far away who is apparently very good; speaks to you nicely, understands and believes the symptoms and is very gentle, and checks for all sorts to rule out or confirm conditions, including fibro, lupus, MS, OA, RA etc (and not just via blood tests) so hoping to be referred to her. I think seeing a good rheumy is something that will help me, as my last rhuemy was quite abrupt and grumpy with me, and at one point said there was nothing physically wrong with me as all the bloods kept coming back normal., and then suggested I had taken on too much and just needed a holiday. I did have quite a good GP who knew about fibro, so she was very helpful and understanding, but she left and the replacement GP was a nightmare, obviously either had no knowledge of fibro or didn't believe in it and was not interested. I've now changed practice but haven't been regarding fibro; that last GP has knocked all my faith and confidence right down. I have made an appointment now though, as I know everything needs to be checked and I can't keep trying to plod along like I have been.

Thanks again for replies, I'll let you know how things go. xx
 
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