Undiagnosed, But Certain I Have This

[justinionn]

I've suffered from fainting spells for many years. Past GP could carried-out blood tests and I once had an ECG. My current GP attributed my last incidence of fainting to stress. Luckily, I haven't fainted to the point of passing-out for a few years now. The last time I fainted, I had gone to the bathroom in the middle of the night, and I awoke face-down on the floor, with a bloody nose.

However, I have still had incidences of feeling very light-headed, and these dizzy spells have increased.

My hands and feet have always been very cold. I'm always the coldest person in any room. I've worked in office environments for the last two decades, and air conditioning hurts me to the point of becoming upset.

Since the beginning of last Autumn, I've endured a series of cold and flu symptoms. I'd acquire a runny nose, chest infection, or fever; gradually recover; have a week or two of feeling better; then get ill again.

This worried me somewhat. I wondered if I had a cancer developing, or if I was HIV+.

My last "flu" was around three weeks ago. I haven't yet felt better. I've been feeling gradually worse.

I've had skin rashes over the last twelve months or so. I've kept these at bay with a range of creams and lotions. I now smooth Vaseline into my eyebrows after I shower, as I kept finding flakes of dry skin between the hairs. This seems to work - for now.

A couple of weeks ago, I developed a full "butterfly rash" on my face. I was unaware of that term at the time of its occurrence. My face looked like the negative image of someone whom had sunburned their face while wearing sunglasses. The rash was basically where glasses would be.

The rash was bumpy and my skin felt raw. I was visiting my parents when this happened, and they convinced me that this was possibly just an allergic reaction to food or some detergent.

I applied hydrocortisone to the rash (yes I know you shouldn't use it near your eyes) and it had subsided greatly by the next morning.

I've felt very weak over the last few weeks. My legs have felt like jelly at times, and I've felt dizzy when walking. In addition to this, I've felt a bit "on autopilot" and "not quite with it." People in the office have remarked that I've been staring into space, although I've not been conscious of doing so. I've been absolutely exhausted recently. I spent most of this past weekend, either lying on the couch or in bed.

I have smoked cigarettes for years. Just recently though, I've cut down from 15 a day, to just 5 a day. I haven't craved nicotine as much as I used to, and it doesn't have the same calming effect it used to.

I've been clumsy and forgetful. I've left my house keys at work; dropped my mobile phone a few times; and actually tripped last Friday, grazing my left hand, while walking home.

Later that same Friday evening, I noticed that the index finger on my right hand felt numb, and was slowly turning white. My entire right arm gradually felt "dead" and I watched in horror as my knuckles and hand turned purple, whilst all my other fingers turned white.

I realised that there was no blood going to my right hand at all. This lasted about 30-40 minutes. I considered phoning an ambulance, but then slowly felt the blood returning. And that hurt - a lot. Pins & needles as my arm came back to life, and then my entire right arm felt bruised.

That's when I Googled, found-out about Reynaud's Syndrome, and its connection to Lupus.

I have had crippling joint pains over the last couple of weeks also. I've had pain under both sides of my ribs to the point that I've worried if I had lung cancer. The right side is worse than the left. As of now, the pain is still there under the right ribs, but not as excrutiating. It's a sharp ache, rather than a dull throb - like a stitch after running, but under my ribs. I've no symptoms of another chest infection, such as phlegm or coughing.

I've had stabbing pains in the sides of my stomach, at around waist height.

My vision has been blurring recently. This is intermittent though, and hasn't happened much over the last two days. My eyes feel tired constantly though.

I'm male, and 45 years old. I've suffered from episodes of panic attacks and depression since being a teen. But this has been sporadic. I usually enjoy good health, on average. Most people whom don't know me, think that I'm at least ten years younger. I look quite healthy.

The only other health problem I've had relatively recently, is insomnia. For the past twelve months, I've only been getting around five hours sleep, and this has been broken sleep due to persistent nightmares waking me.

I'm attaching a photo I took of my right hand, last Friday evening.

My right hand and both feet are still icy cold tonight, although strangely, my left hand feels fine.

I'm really worried that I'm never going to feel better.

[justinionn]

Sorry. That should have read: "Past GPs have carried-out blood tests"...

I'm unsure how to edit the post. It's my first post.

[1sam]

For a moment I thought I was reading one of my posts... except for the smoking and you being a man.

I'm sorry you feel badly. I really suggest you see a rheumatologist for your symptoms. You need to be properly diagnosed and treated, you deserve feeling better.

[Georgie-girl]

Wow that sounds like I wrote it. I've had all the symptoms you mention at some point except the passing out. I was labelled with sjogrens for years albeit not a definitive diagnosis as the naughty antibodies weren't doing as they were supposed to. Now it seems it's mixed/overlap connective tissue. What I'm saying is, it could be lupus, APS or anything underlying so it's vital you get seen by a rheumatologist for a correct diagnosis and put on the right treatment. Go get your GP to refer you and good luck.

[misty14]

Hi Justinian

Sorry to read your having so many problems!. I just want to say your hand photo is very like mine. I have Raynauds and livedo reticular is. It's a type of rash that can come with these illnesses!. I agree with your previous correspondents that you need to be referred to Rheumatology. Could I just ask have you had bloods done recently?. You shouldn't be fainting like you are and wonder if you've been checked for anemia?. Keep us posted and good luck. x

[justinionn]

Hi. I've made an appointment with my GP, for Friday of next week.

I recently started a new job, and it's really hard to get any time off.

I'm feeling a little better today - but by "better" I mean sixty percent myself, instead of the ten percent I felt last Friday.

I've always been very pale. I last had blood tests two years ago, but my GP never really explained what she had tested for, only that the results were negative.

I now feel like this is something I've had for twenty/thirty years, but it's become more apparent recently.

I went to bed at 8:30 last night, and slept from 11:00 till 4:45. I don't feel as exhausted today.

[Purpletop]

Firstly, I'm no doctor, so take what I say in that spirit please.

The rashes, fatigue, flu-like, insomnia, all sound like autoimmune disease (and there are several that could cause these symptoms), whilst the fainting, the pins and needles, the on/off blurry vision and Raynauds suggest a dysfunction of your body's ability to control blood pressure and blood circulation, i.e. POTS/dysautonomia (although pins and needles/tingling/numbness in limbs can also be a feature of autoimmune disease). The latter can be triggered by the former.

What tests have you had done? You'll need full auto antibody panel and full blood count for autoimmune diseases (together with a host of other blood tests to eliminate things like thyroid disease, kidney disease, anemia and so on). Even with 'clean' blood tests, autoimmune diseases can still exist in the body. That's because in some people the current blood tests are not sufficiently sensitive to detect abnormal activity.

For POTS/dysautonomia, you'll need a tilt table test to check your heart rate on getting up. There are many other tests for POTS but this is the first one to do and quite simple to do it. Just be aware that not many GPs are used to deal with POTS and many dismiss it as being anxiety driven. Which it isn't, so try not to let yourself swayed by that and insist on being tested.

Autoimmune diseases are not easy - they're unpredictable and symptoms hit when one least expects them. They can be managed with medication but a sufferer will never feel as they did when they were healthy - after all, these are chronic diseases, i.e. they don't have a cure.

In respect of POTS/dysautonomia, there is no cure for that either but medication and lifestyle measures can address the symptoms. For example, if fainting is due to drops in blood pressure, medication is given to increase it, together with increase in salt and water intake.

Try not to let your imagination run wild with how your life is going to be affected by this. We've all learnt to take it day by day and be happy with what we can do on that day, rather than focus on what we can't do. Grief over the loss of health, loss of dreams for the future and so on, is normal, so don't feel bad about that.

You need a good rheumatologist who listens to your symptoms sympathetically rather than go by the blood tests results. Someone experienced in autoimmune diseases and its multifaceted impact. Try and research your local hospitals to see who is around. Lupus UK can also help to guide you on that.

Be prepared for delays to get to diagnosis, as you may encounter doctors who won't believe you. But you'll need to stay strong and fight your corner. Meanwhile try to be good to yourself - eat a balanced diet, quite smoking (big factor in autoimmunity) and rest when your body tells you to.

I know that the unknown is scary but you're welcome to ask questions, however trivial they may seem, in this forum. We all understand how it feels.

[justinionn in reply to Purpletop]

I asked the GP what she was testing for, last year. She was very vague.

I think she tested for thyroid problems, diabetes, and white blood cell count. More than that, I don't know.

I've also had severe headaches this past week.

I bought some caffeine pills a couple of weeks ago, because I've been so tired. I've stopped taking them now. I think they may have had an adverse effect on me.

I've also been taking herbal sleeping pills recently. These ones:

wilko.com/vitamins-and-supp...

My stomach has veered between constipation and diorrhea recently, with no inbetween. Maybe I'm allergic to the herbal pills. I don't know.

I don't like getting in the shower in the morning, until I've "been to the toilet", and I can be sat there for half an hour sometimes, looking at my watch, worrying that I'll be late for work.

My appointment with the GP is booked for next Friday. I feel much better today; I think the warmer weather has helped a little.

p.s. My hand isn't usually as gnarly or skeletal. This is what it looked like, once the blood returned, last Friday:

i.imgur.com/oz2AwEh.jpg

And I do look healthy, in general. This picture is from a few weeks ago. I just don't look ill, and when I've spoken to people about this, they've told me it's all in my head, or that I'm exaggerating:

i.imgur.com/no3Agf0.jpg

Today, I've no severe issues, but I only slept five hours. My eyes feel tired and there's a slight throbbing under my right ribs. That throbbing is nothing like the pain I've felt recently though.

I have been sneezing today, and my throat feels irritated... So, it looks like I'm developing yet another cold.

I'm so fed-up.

I had the white finger problem again, this Wednesday - a few days ago. I was in the office, and just my little finger on my right hand turned numb and white. I showed some colleagues, and they said that it was unusual and that I should go to the doctor. I now have a hot water bottle in my locker at work, and I put my right hand on it immediately, which stopped the whiteness.

I'm worried that I'll just get worse, and I won't be able to work, and I'll lose my home.

I will ensure that the GP tests specifically for auto-immune diseases, and I won't back down this time, if any results are negative.

[Purpletop in reply to justinionn]

I understand the worry. That's why getting a diagnosis is critical, so you can get the right treatment as soon as possible.

The tummy problems are likely to be connected to the autoimmune disease or even POTS. The sneezing can be allergy.

Believe it or not, most of us look good but feel dreadful. You'll find many posts here about the same frustration with nit being believed because "we look good".

Let us know how you get on at the GP. If you can get a referral to a rheumatologist, that would be great.

[Chanpreet_Walia LUPUS UK]

Hi Justinionn,

Welcome to the LUPUS UK HealthUnlocked Community.

I am sorry to hear you have been feeling very poorly, have you discussed all of your symptoms with your doctor?

Flu-like symptoms, skin rashes, dry eyes and joint pains are all symptoms associated with lupus. Lupus can cause inflammation of the tissues covering internal organs; causing abdominal pain to occur in some cases. It is important to remember that lupus presents differently in everybody and rarely do two people have exactly the same symptoms.

Your doctor may initially do an antinuclear antibody (ANA) test for lupus. Further tests are needed to confirm a diagnosis and these are commonly done by a rheumatologist. To find out more about the symptoms and diagnosis of lupus, you may want to read our ‘LUPUS: The Symptoms and Diagnosis’ factsheet here: lupusuk.org.uk/wp-content/u...

Lupus can be associated with Raynaud’s phenomenon where poor circulation can lead to fingertip ulceration; it is advised to discuss this with your doctor. You may like to take our factsheet on ‘LUPUS: and Associated Conditions’ with you when seeing your doctor to aid you in explaining your symptoms: lupusuk.org.uk/wp-content/u.... We also have a blog article about managing Raynaud’s which you may find helpful: lupusuk.org.uk/coping-with-...

Wishing you the best of luck, let us know how you get on.