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ziggywigs
07-20-2010, 12:58 PM
I am starting to feel like a hypochondriac! I've been toing and froing from the doc for years with one thing or another.

GI probs - investigated and told have on biopsy auto immune prob - didn't state exactly what just some form of colitis. Pain is so bad i've blacked out a couple of times and been rushed to hospital diagnosed as GE episode and sent home. started five years ago and get flare ups from time to time.
Fatigue - comes in waves and is getting worse, it flares up if i get stressed. So tired i can just lay on the bed and not have the energy to propel myself off the bed. Getting worse. Had this for 10 years or so.
Rosacea - I complained of a rash on my nose and cheeks - diagnosed rosacea prescribed tetracycline started in 2007
joint pains - aches and pains in fingers, wrists, knees, ankles legs and neck sometimes back, stiff and sore sometimes so takes time for me to loosen off. Pain in calves = sometimes get pains in back of calves can be bad when walking. Doc said circulation probs.
photosensitivity - occasionally i find light is too bright for my eyes
headaches - most days have a headache - like a migraine but not a migraine - no flashing - just a waterfall effect sometimes.
eyes - feel gritty and as though there are things in front of them, saw an ophthamologist who said prob rosacea had spread to eyes but can't see any evidence of this
fever - get strange unexplained fevers/chills for short periods of time occasionally, they come from nowhere and go just as quick - it's as though i've an infection and then it goes or sometimes just fighting off an infection.
sensitivity to sun - my skin on forearms blisters in the sun - get lots of tiny white blisters like miniature sunburn but i am not burnt or don't have prolonged exposure to sun.
sore mouth - funny but my mouth tends to be sore if i eat food that is too spicy, sweet, hot, cold etc and tongue always feels sore. Only thing i can comfortably eat is vegetables.
Recently was admitted to hospital following extreme chest pain for which they gave me GTN spray but no effect, I could hardly breath as pain was too intense. Disappeared after about four days. No real explanation for this.

Oh there's other bits and pieces last year had a 'virus' and knocked my bloods out kidney and liver functions were over the place - so monitored for 3 months back to normal. The extreme fatigue i had was put down to post viral fatigue but was off work for 3 weeks.

Recently i have started to wonder if it could be something linked and then found information on lupus.

In isolation it seems as though just illnesses but and the last few years the fatigue has increased and comes in waves. My bloods for anaemia are sometimes borderline as they test this when i complain of fatigue. My feet are always cold and even in a heatwave will be cold if subjected to cold draughts...others complain of the heat when i am saying i'm cold.

I can't face going to the docs again as I just feel so down about it all and think that it's all in the mind...I sometimes feel like i'm going mad and i can't cope. Last night i came home from work with a really horrible head and extremely tired (it's beyond tiredness as no amount of sleep will cure it), managed to stagger into bed, didn't have energy to eat and that was about it. I think stress may be a trigger factor for the tiredness etc.

Does anyone recognise this?

rob
07-20-2010, 05:28 PM
Hi Ziggywigs,

Welcome to WHL. First off, I don't think you are a hypochondriac. I'm sorry to hear you have been having such a difficult time dealing with your various symptoms. I'm not a Dr., so what I'll say is simply an opinion. Most of your symptoms are quite familiar to me. I was diagnosed with Systemic Lupus in 2004, and I have had, or are still having, many of your symptoms. Could you have an autoimmune disease such as lupus? It's possible.

Have you ever been to a Rheumotologist? If not, I would suggest you ask your Dr. to refer you to one, and to request an evaluation to see if you meet the diagnostic criteria for lupus. There is no single test to rule lupus in or out, but there is one test that is a fairly strong indicator. It's called an ANA test. The ANA stands for anti-nuclear antigen, and a positive result in various patterns is a good indicator of a possible autoimmune disorder.

If it turns out that you have lupus, there are some fairly effective treatments available which can really help. There is no cure, but it can be managed, and many people live a fulfilling life despite it. Lupus is a serious disease, but it's not an automatic end by any means. When I was diagnosed, it was hard to accept at first, but I also found relief because I now knew the cause of all my seemingly unrelated symptoms. And, since I now had a diagnosis, I could get on with a proper treatment regimen, and as a result of that, get on with living my life. I hope we can help you find the answers that you need.

Once again, welcome to our group, and please make yourself at home.

Rob

Bonita
07-20-2010, 06:30 PM
I was diagnosised about three years ago with lupus and myositis and had pretty much of the same symptoms as you are having. I really thought it was in my head till i ended up in the hospital and they gave me a wonderfull rhumetologist and i trust him/ I still have flares and symptoms but they are being controlled by different meds. Like Rob said you probably should see a good rhumetologist. I kope you will soon get some answers and keep in touch we are here to listen i know this site has been a God send for me. Love and prayers Bonita

SandyR
07-21-2010, 06:45 AM
Hi Ziggywigs,

Welcome to WHL! I don't think you sound like a hypochondriac either, but I also have most of your same symptoms - GI problems (IBS, Spastic Colon, Lactose Intolerant, Acid Reflux), Fatigue (which was really bad Sunday and Monday so much so I took a sick day), Rosacea (isn't rosacea supposed to always be bright? my rash is sometimes so pale it wouldn't be noticed by someone who doesn't know me), joint pains, photosensitivity (worse this summer than ever before), headaches (sinus usually), gritty eyes (which this morning I was thinking about calling my eye dr about), mouth sores, and chest pain. I also get the cold extremities and blue nailbeds in the cold. I feel like I am made out to be a hypochondriac at times, especially by the docs who see me when I am (visibly) symptom free, but how do you see joint pain and fatigue and headaches and chest pain? How can the doctors know what it feels like to give yourself a pep talk to get out of bed or stand up from sitting or go out in the sun? They just don't. All we can do is take comfort in knowing they are the crazy ones and we know our bodies better than them. I often think to myself "God bless that person for not understanding the pain I am in". It brings me some small comfort to know that their ignorance and bliss is what causes them to misunderstand my misery because I know if they did understand, it could only truly be from personal firsthand experiences like ours and I wouldn't wish that on anyone. Don't give up. Use that frustration to power you to find an answer and to advocate for yourself. There are good doctors out there who actually do listen and I know we will find them!
Sandy