HealingWell
Search Close Search
☰

Fibromyalgia & Lupus

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/15/2012 3:10 PM (GMT 0)
Hi Fellow sufferers...... Yes I am new here, and I live in Australia....... I was diagnosed in 2005 with Lupus... I was feeling unwell, and had a rash over my very swallen feet, I went to my Dr. He advised I have a biopsi on the spots on my feet.  He said I have a rash on my face, which to him looked like a butterfly rash, he suspected Lupus.  I had never heard of it.. So off I went for my biopsi and it came back Lupus.  I had aches and pains everywhere, tired, headache, irritable bowel syndrom, terrible menstrual pains, red rash over nose and cheeks.... Was put on Plaquenil, Prednisalone and referred to a Rheumy.... Rheumy never seemed to think it was Lupus, because I had no swelling of joints...... But kept seeing me and taking my money, just to listen to me moan about the frustration of it all... After 1 yr, he said there was no point seeing me anylonger as there was nothing he could do for me.  So home I went, complete with pains and all of the above etc..... I then changed my normal Dr as I had moved.  Told him I had Lupus, he looked at me and said how do you know..... I told him about the biopsi... hm ok was his reply, and put a big ? next tot he word Lupus on my records...... In 2009 some 4 yrs later..... STill all the above problems and few added ones too...... Specialist after specialist..... Never got me anywhere, until...... I saw a Gastroentorologist again relayed all my problems.... that I find draining in itself........ He told me to stand up, he pushed me here there and everywhere and it hurt........ I cringed and moaned each press he made........ He said I tell you what you have, you have Fibromyalgia, never heard of this either I thought to myself..... ok........... so now I have both...... or do I.......? I am not totally sure myself........ I was working, goint to the gym to do a circuit, and then swimming 10 laps of the pool..  To find myself in work, could not even sign my name in full, would have to stop half way...... Sat at my computer, and could not for the life of me think what I had to do..... Only been there a couple years :D hmmmmm then forgetting things I was asked to do or get..... It became embarrrasing...... My legs were swelling and had elastic bands slapping and stinging them, my head throbbed, I had double vision, tops of my feet were so sore to walk... My legs so stiff, and sooooooo tired, I used to hold the wall to walk about the office.....I took to sitting at my desk, and crying... Full on for the whole office to see...... I was constantly having urine infections, and Irritable bowel, so I had to get up and down all day long............ When I was diagnosed I resigned.......... Luckily I was put on a disability pension..... I was put on Lyrica, more prednisalone, and Endep and some other stuff...... I blew up like a puffer fish...... I looked like I  was going to explode........ and I felt like it too... I was averaging 2 - 5 hrs sleep per night...... while I was still working...... I had given the gym and the pool away, my god I couldnt get to the toilet without holding walls, let alond lifting weights and swimming laps...... them were the days :D... reduced to a whole month of laying on my bed, in pain, huge, swallen, hurting in every stupid place you can think of.... and crying.......... Eventually some of the signs started to wane a bit...... I was getting up and walking about the house.... Then I realised all the pills have made little if no difference, so I told my Dr I wnted off all of them.......... He was startled but I was determined.... So off I came and off the kg's came too, which lifted my spirits higher and higher :D then I started walking further and further my vision came back norma, swelling reduced, and pains abated some what...... STill have other symptoms and still cant work, and still cant sleep, but.......... I refuse to let it beat me totally..... Yes it kills me not to be the person I once was...... But I look around, and yes there is always lots of other people worse off than I........... So I plod on every day, doing what I can and resting lots..... NOw do I have Lupus and Fibro? My Dr doesnt answer me when I ask... He beats about the bush, as my bloods are way from normal, but not reading right for Lupus any more either..... I have same symptoms and can't work iout if it FM or Lupus.... I have terrible bad chests, when I get a cold, and have developed a strange sensation when I smell perfume but that is only now after some 4 yrs of being diagnosed with Fibro.... Is it possible that more things will come to light, as the years go by, or is the Lupus doing more damage to me as the years go by.... I am fed up of Dr's over an over all the same stuff year after year....... But I am alive to tell my story and have my moan........ This has been a great help, because I don't have anyone else I can ask ? to or talk about it.... as my family know very little and are not computer savvy, and really I think they think it is a lot of hallabulloo or I am exagerating the facts..... I know I am not.... oh and irritability is an issue now too, and too much noise all at once... and I cant digest stuff that I read, which annoys me I want to read more and more but can't....... oh well thx for this site to let me vent........ If anyone has anything to imput to this plz do, I am only too will to listen to anythning anyone has to say about it all..... because it is soooooo hard to get my head around it... when Dr's talk in jargon......unlike us who speak as we see or feel it..... :D thx peeps..... Little Rosie :D

 

Posted 7/15/2012 4:25 PM (GMT 0)
Hi Rosie, Welcome to the forum! I'm sorry for your pain and frustration.

It is so difficult when we feel as if we have no control over our bodies...and when doctors aren't willing to get to the bottom of things to give us a correct dx and meds that will help. If you feel your doctor is not helping, it is time to look for one who is willing to listen and go the extra mile for you.

Having multiple health issues can make things tricky. Lots of bloodwork should be done and clinical symptoms need to be looked at carefully. There are many conditions that have overlap symptoms. Fibro is not an inflammatory process. It isn't unusual to have one or more autoimmune conditions going on along with fibro. I'm one who has an overlap of conditions. It takes a good doctor and in my case, I had several specialists with my rheumy managing my case.

We are all so differant with medications, been on many over the years...for the autoimmune stuff...plaquenil, prednisone, azathiaprine and methotrexate. Right now methotrexate is the med I'm on ...it slows down disease processes.

For fibro I take Savella (SNRI) and use Flexeril a muscle relaxer as needed. Pain meds have been used in the past, but no longer use any narcotic...have used percocet and vicodin...now take Excedrin.

Checkout fibro 101 on the top of the page...you will find some wonderful info. Most of us have found moist heat to be helpful in soothing aching muscles...also some form of exercise helps... but be careful to pace yourself.

Glad you have joined us...keep posting...we care :)

Hugs, Robin
Posted 7/15/2012 7:17 PM (GMT 0)
Hi, Rosie.

Mainly just want to add my welcome, because Robin has already given you all the information I could :)

Don't give up! We are definitely here for you.

Debbie
Posted 7/15/2012 7:26 PM (GMT 0)
Hmmm....To my knowledge...there is not a single test that is definitive for Lupus. I don't see how in the world that first Dr. said a biopsy was positive for this...

If you go to the main Lupus websites (.org) sites...(I obviously have no affiliation whatsoever....But it shows that Lupus, just like Fibro...is more of ruling other things out and then coming up with this diagnosis...

There are certainly hallmark symptoms of Lupus and Fibro...but again...I don't know of any single test that has been developed that is 100% to show a diagnosis...

It's really about finding a good Rheumatologist who is willing to help you live the best life possible whether it's Lupus, Fibro, or both...

Post Edited (Snowbunny21) : 7/15/2012 4:28:38 PM (GMT-6)

Posted 7/15/2012 9:25 PM (GMT 0)
Diagnosing the autoimmune connective diseases is made from gathering lots of information. Clinical symptoms and blood work , and sometimes biopsies are used. Each case is differant.

If you have an autoimmune disease your immune system loses its ability to tell the differance between good cells and bad cells...the immune system starts making antibodies against the body's healthy cells and tissues...these are called autoantibodies...they can destroy all your connective tissue, blood, nerves, skin, bones, collagen and ligaments. if your disease is systemic it can destroy your organs.

Testing can be exhaustive...differant diseases are associated with differant autoantibodies...these show up in blood and biopsies...titres can change. It takes time...many factors are used to come up with a diagnosis. Getting a confirmation from other specialists help.

It took me years...some clinical symptoms take longer to present themselves. It is so important to tell your doctor of any new symptoms.

Hugs, Robin
✚ New Topic ✚ Reply