[sianee]

Hello, I will try to keep this short, I hope you can offer any advice

I'm 29 and have been sick for 3 years now, I have a range of underactive thyroid/Me/CFS symptoms and terrible sleep waking hourly and recently looked into Lupus from recent blood tests (Weak positive ANA Staining). :worried:

I went from a healthy, happy, 5 times a week gym goer, brink of great career to a tired, unwell, numerous symptoms person in a few months. :sad:

I've just found out 2 weeks ago from a private endocrinologist that I have had glandular fever and CMV in last 3 years!! I also had whiplash around the time i started to get ill and have had chronic back pain ever since.

His advice was rest, exercise, wait and see! and keeping me on 50mg of levothyroxine as it made me feel better in 3 years than ever before 3 months ago. Not really great news!

However im on the decline again and never made a good recovery, just felt a bit better and in less pain.

Ive been told in the past its 'autonomic nervous system dysfunction'/ Epilepsy and been on loads of wrong drugs over the years to find out thats not whats wrong after tests.

I pick up colds/flu all the time, have had shingles twice, rashes all the time including a rare pityriosis rosea when symptoms began. Now what seems to be a rash on my cheeks and i wear heavy foundation to cover it up.

I have pain in my back all the time and have tried yoga, spinal manipulation the lot which reduces it a bit.

Im going to see a Dr S privately in a few weeks whos a virologist and treats with natural thyroid hormone which has helped people with ME aparently.

The only family history of illness is auntie with ms, recently diagnosed, sister with cushings.

I am going to try and get a referal to a rheumo this week as all my red blood cells/ white are coming back 'abnormal'

Anhyone in or has been in a similar situation?? would love to hear from you xx

 

[Katharine]

Hello Sianee and welcome

Many of us have indeed gone through similar situations. Health and in particular auto-immune diseases can be extremely complex.

I'm not sure if your symptoms tie in with lupus or not and only an experienced rheumatologst would be able to evaluate that.

There is also the question of whether your thyroid is correctly regulated or not as that can take some time. I'm not sure how long you've been on thyroxine and whether it is regulated or not.

You can find a list of the ACR criteria for lupus at this link

http://www.thelupussite.com/forum/showthread.php?t=33123

Although rashes are very common in lupus they are also very common in a number of other diseases as well. Back pain is pretty unusual in lupus and althoug some lupus patients also have back pain it is usually "caused" by something else.

Lupus (and other auto-immune diseases) is incredibly complex but it is certainly worth looking into it thoroughly even if only to eliminate it from the list of possible problems. Your ANA will need to be monitored to see if it changes to a stronger positive (many "healthy" people may have a weak positive ANA without having lupus or another auto-immune disorder).

Obviously something is very wrong and you are right to be looking into everything. It sounds like you have approached all the right docs and the rheumy referral is also a good idea.

If we can be of any help with support and advice, don't hesitate

bye for now,
Katharine

 

[lazylegs]

Hello Sianee,

Welcome to the site. It is a great place to find reliable information about Lupus.

You mentioned having a rash, have you considered going to a dermatologist? A dermatologist should be able to let you know if your rash looks like a Lupus rash or not. A biopsy could also be done for confirmation.

Good luck with the rheumatologist appointment. I suggest taking pictures of your rash in case it is not in full bloom on the day you see the doctor.

Take care,
Lazylegs

 

[onetay]

sianee,
Hi and welcome to the site. Lupus can be very confusing and at time overwhelming, even for those of us that have had it for year or most of our lives. You should see a rhuemy and see what they say is going on with you. There are a lot of things that can cause the red and white cells to be abnormal. I had never heard of lupus until I was told I had it not anyone in my family had it or anything like it. It seems that lupus plays by no rules and don't seem to care, it thrives on confusing everyone including doctors. I am sure I have not helped much but did want to welcome you to the site and hope to see you in the chat room sometime. I hope you are doing well.

 

[Pink Pearl]

Hi and welcome to the board,
I concur with the moderators and Tammy that this is a very good site to come to looking for info and experiences with lupus.

I've battled back pain a good share of my adult life. I have degenerative osteoarthrits, caused, my rheumy says, by either sle or the meds I've used. There are ways to control it, but you need to have the initial cause identified first.

I am one of the few who has never developed ana's, but did develop antibodies for other things more specific to sle. The criteria for sle does NOT depend ONLY on ana's. They are one of 11 symptoms, not the be all, do all, end all definition.

Taking a picture with you to the rheumy appt would be good. That way, as said, if it isn't present that particular day, you can show the doctor what it is looking like.

Good luck with your doctor appt and let us know how it goes.
Sally

 

[iksyfaye]

Hi, I have to agree that this site has a lot of very good information...I did have +ANA with homogenous and speckled patterns on bloodwork and re-checks of it...but some of the other markers have been "normal limits"...but, as my GP and my Rheumy have told me, "Lupus is the 'great impostor'"...which seems to be so true...it seems that prior to my SLE/Sjogrens diagnoses, I was just chalking up my symptoms and pains to getting "older"...my Dr.'s both said, "Don't think so...". I cannot believe how much of it corresponds with the lupus/sjogrens criteria...I guess I had been paddling down the ole "river of denial" for a while...anyways, I hope you get some answers soon...and some relief...
I

 

[sianee]

Thanks for the messages

Hello and thank you for all the messages they werre very useful

I have a rheumatologist appoitment!!! unfortuantly too sick to pick up the choose and book slip from my GPs but hoping too this week!

I have also spent the last week or so making a massive complaint to the nhs for the awful care ive had the past 3 years! fingers crossed it will speed everything up and i will get some proper tests done at last!

Im back in bed all day at the moment, managing to cook dinner for myself and boyfriend and thats about it! But im feeling less like i have the flu but with no energy increase unfortuantly and i had a very strange 'episode' last night where i went very tired and sleepy and all my body went heavy and limp then about 30 mins later i went uber alert and my eyes felt like they were popping out of their sockets! very stange and quite upsetting and scary. Maybe some sort of fit i dont know.

Hopefully my complaint will get looked at soon!
xx

 

[KarolH]

Hi Sianee and welcome to the board.

I am sorry your feeling so bad right now and I also hope your complaint gets addressed quickly.

One thing that I found of particular interest in your post is that after the whiplash is when things started to hit you pretty bad.

In July 2003 I had a accident on the job, a fall down accident and hit my head.

Ever since this incident I have NOT been the same person and just continued to decline in health.

It makes me wonder if one would ever have anything to do with the other???

I do hope you get help and answers to your health issues so that you can get on with feeling better.

Come join us in the chat room sometime. We always have a good time in there.

Take good care of yourself and let us know how you get along.:wink2: