Undiagnosed illness making life a misery

LegacyUser

Hey

Not sure why I am posting this. Never really posted on forums before, but just thought I would see what I get back.

For the past 2.5 years my health has being going down hill. The run down of this is:

- Chronic stomach problems. In pain everyday
- Weird pressure in my head. It starts from my neck and then basically my head feel like it's going to explode. Hard to focus, eyes feel like they are going to pop out. I have this every day to some degree.
- Pain in the center of my chest. Not sharp. Dull, I usually hold my chest in for a small bit of relief, but not much. I sometimes feel like I am going to just drop dead as it can make me miss a breath. Really odd feeling. I have this every day.
- I have really bad joint pains everyday.

I am 32. I feel like I am 100. I am fit (go to Gym), slim (I can't put on weight, which I have been tested for as well). Over that 2.5 year period I've had every test you can name and a bunch of x-rays, MRI's. I even had an operation because they said the pressure in my head could be related to my nose, I knew it wasn't, but went along with it. That was a joke. I have been diagnosed with the following:

- Chronic IBS
- fibromyalgia
- Migraine-Associated Vertigo (http://www.mvertigo.org/)

and of course a lot of, your stressed, you work too much, anxiety. I don't talk about this to people anymore as I just get it's probably this or that and it's near impossible to explain how utterly horrible I feel everyday.

Luckily everything bar my health is going well, job, relationship and I am generally happy. But I am in pain, discomfort and feel odd every day. 2.5 years is a long time, but i have no idea if i can put up with this indefinitely. I don't really know what to do. I've seen lots of consultants, changed docs a bunch of times, read lots on the internet (i stopped because it could literally be anything), messed about with diet, just tried to ignore it etc etc.

I literally don't know what to do anymore. My symptoms don't make that much sense and I can see why docs have no idea what it is.

Anyone else have this type of problem before, when they just don't know what to do with an undiagnosed illness?

Thanks for listening

kangaroo

There are some groups that cater for a variety of chronic illnesses e.g. Invisible Disabilities Association http://www.invisibledisabilities.org/ so even without a diagnosis they could be of use.

Fibromyalgia Syndrome, one of your diagnoses, has a range of symptoms associated with it - it's a lot more than just muscle and joint pain/tender points.

I had a variety of symptoms (IBS, bladder symptoms, headaches, muscle and joint pains, sensitivity to sound and light etc.) before getting a diagnosis (after 5 years) that is somewhat similar to Fibromyalgia, ME/Chronic Fatigue Syndrome. Some generic advice for the individual symptoms wasn't necessarily so useful in my diagnosis e.g. I had spent years trying to do exercise which was supposed to help my muscle and joint pains - when I stopped, the muscle and joint pains eased dramatically. As well as "aerobic" exercise, this was also true for my neck pain - I was constantly doing very minor stretching exercises "from treat your own neck" - when I stopped, the problems in my neck dropped dramatically (although I still had a stiff neck). I had never noticed this as I had been so religious about doing the exercises.

Best of luck with your struggle.

rugbug86

Hiya OP

I'm a few years with an undiagnosed illness and it's really frustrating.

It started with chronic pain in my lower right tummy. Appendicitis? Nah. X-ray showed fecal impaction (but of the small intestine) - yet I'd had no trouble with my bowel. Got enema (best fun ever).
Discharged from hospital after 4 days of tests.

Still in pain.

Ovarian cysts? Sent for ultrasound. Nah.

Endometreosis? Sent for laproscopy. Nah.

Pain got really bad again, couldn't keep down water even. Doc sent me to A&E. Appendicitis? Nah. Full set of tests again. Nothing shown. Fecal impaction (again!) on x-ray (again in small intestine). This time they fed me with laxatives until I went and they discharged me.

Still in pain.

Was busy in work and realised I hadn't gone to the loo for a few days. Thought nothing of it really. When it got to the week and a half stage I went to the chemist and got some remedies. When they didn't work I went to the GP - at this stage it had been ~ 3 weeks and no movement at all. GP gave me high doses of stuff and sent me on my merry way until (as he puts it) the bottom fell out of me. Then it was trying to find a maintenance dose of meds.

Was at GP for something unrelated and he said he'd do a quick check on my tummy, he wasn't happy with what he felt and did a rectal exam (almost as much fun as the enema) and there were no faeces in my rectum, even though I hadn't pooped in over a week.

He sent me to a consultant up in CUH, great man. I've had a colonoscopy done - showed nothing. A barium test. Transit studies. Sigmoidoscopy (lots of bleeding when I do manage to go). He can't diagnose me. He said its chronic IBS on the constipation side. He can manage my symptoms. I'm also getting chronic reflux (can't eat within ~2 hours of bed, otherwise it'll all come back up).

So I'm on a load of different meds to try and get me going ~daily and not chucking back up my food.

It's seriously taking its toll on me mentally. It's been over 3 years now and there's nothing they can do to stop the pain. It's all well and good for them to manage my symptoms but they can't manage my pain. I'm in pain daily, sometimes I need to lie down with it, but like you I've stopped complaining about it because what's the point.

I'm also suffering from constant tiredness, am sleeping okayish but even after a weekend of rest I still get up on Mondays exhausted. I sometimes get a "brain fog" where concentration is difficult, and when your job is to write scientific papers and present your work at conferences, concentration is important!!

I hope you get somewhere with your quest for health!

LegacyUser

This is like reading a carbon copy of my own problems which also started 2 1/2 yrs ago. It is so difficult. I had to give up work for a yr and now am trying to build myself up mentally to return but it's so difficult when you are in constant pain and feel on a completely different spectrum to normal.
After seeing several consultants and being diagnosed with conditions where treatment hasn't worked, I have given up on the whole idea of a 'diagnosis' as it seems to be a waste of my energy. I am getting fornightly swedish body massages and seeing an osteopath - I think it helps a but isn't the full cure. People have no idea how lucky they are to feel normal/healthy, I would give anything to just feel like myself and have a pain free moment.

cltt97

Jesus, you two have really won the jackpot of misery! I can only sympathise... I myself have a thyroid problem that causes me much grief - and I know what this head pressure feels like, as I get this as a side effect from thyroid medication, so the feeling of about to keel over or having your head explode is very familiar to me. It's just really horrible. Only difference is, for me it stops the minute I stop taking the thyroid meds. But I did find I tolerated them better when combining with cortisol - which I persuaded my endocrinologist to let me take due to a saliva test that indicated that I have adrenal fatigue - so if that hasn't been one of the tests you've done so far, might be worth exploring. There are surprisingly also a lot of symptoms that can derive from malnutrition - such as not enough iron/B12/folic acid, vitamin D, just to name a few frequent offenders. Have you had all those tested? I found that despite my ferritin being in the normal range (albeit very near the bottom) I felt better taking iron supplements. the other two b's are also in the lower range and I'm just waiting back on my Vit D, but all my fellow thyroid sufferers usually show problems with one of the above.

Re the digestive problems - I have a bit of those too, but nowhere near as bad, and again I know the source of the problem - the damned thyroid gland. But in any case, I thought you might like to read a book that was written by an Irish guy who specialises in all sorts of gut dysfunctions and although I've never contacted him, have heard nothing but good things about him - the book is called "hard to stomach", so might be worth having a read.
In any case I wish you both all the best, I hope you get better soon!

Splendour

Hi Undiagnosed-can't offer you any advice except 'hang in there'.

Am undiagnosed myself for years and know exactly how you feel-the frustration can be overwhelming especially when people assume it's anxiety/stress/depression and you KNOW it's a physical thing. I totally understand when you say you don't want to talk to others about it and truth be know they'd rather not hear it but it is so awful going through every day feeling horrific and having to hide it...

Keep looking for answers though and ignore your GP saying 'it's in your head'. After 8 years of feeling absolutely awful (to the point of non or very little function) I finally got my GP to send me for a scan (she kept telling me if there was anything funny going on in my head I'd be dead) and lo and behold some lesions were found. Am not diagnosed as yet but it is such a relief for me to have at least some idea as to what direction I should take. Difficult though it is, you've got to keep hounding your GP until you get answers. This diagnoses of chronic fatigue drives me crazy;FATIGUE IS A SYMPTOM not a diagnoses and the sooner Doctors realise this, the better!

Anyway,as I say, hang in there and try and keep your spirits up.

@Kangaroo-thanks for that link, have never heard of Invisible Disabilities Association before. 'But you look good'-now doesn't that sound very familiar!

LegacyUser

Thanks for all the input. I found another thread on this board that had some really great information in it. I bought the book "Hard to Stomach: Real Solutions to your Digestive Problems" by Dr John Mckenna. Also going to ring him to see if he still takes on clients. From my own research, I am looking at 2 possibilities:

- Leaky Gut Syndrome
- Mercury Toxicity (only because I had fillings 3 or so years ago and read in that other thread about the things they can cause)

I need to get some type of relief as it's a nightmare being in pain everyday.

Janedoe10

rugbug86 .. Did the consultants say why every thing is getting compacted ? Maybe u should test by taking some prune juice small amount morning and evening and see what moves then? My dad had complications before where nothing "moved" and although he had pain for a while once he takes regular juice and also prunes he is ok ... He got the taste for them at the start and ate too much and the opposite prob then !! U can get them cheaper in aldi . S

rugbug86

Hey janedoe, I've tried everything. I'm currently on 3 separate meds for constipation, which, touch wood, appear to be working. I've tried every fruit imaginable, but it's not a fibre thing, its a physiological thing!

cltt97

Undiagnosed wrote: »

I bought the book "Hard to Stomach: Real Solutions to your Digestive Problems" by Dr John Mckenna. Also going to ring him to see if he still takes on clients.

Let us know how you get on, it's so important to share these type of quests!

kangaroo

Splendour wrote: »

This diagnoses of chronic fatigue drives me crazy;FATIGUE IS A SYMPTOM not a diagnoses and the sooner Doctors realise this, the better!

Anyway,as I say, hang in there and try and keep your spirits up.

@Kangaroo-thanks for that link, have never heard of Invisible Disabilities Association before. 'But you look good'-now doesn't that sound very familiar!

Well, I wish I had been given the diagnosis of Chronic Fatigue Syndrome (or M.E.) earlier; it would most likely have prevented me from going from being relatively mildly affected (being in full time educated) to be severely affected and housebound for the last 17 years - basically the lack of the diagnosis (and consequent mismanagement of my condition as well as the lack of support from not have a diagnosis) I think ruined my life. I, of course, would like to know what causes my condition and ideally how to treat it: but medicine doesn't know the root cause of quite a lot of conditions - medicine is constantly evolving, it's not complete. However, just to be clear, once I got the diagnosis, I didn't stop trying treatments, requesting tests, etc.

That's from saying that everyone with the symptom of fatigue should be dumped quickly into a chronic fatigue syndrome diagnosis and there are lots and lots of other medical conditions that can have that symptom and some of these conditions can be treated quite well already.

spookwoman

Hi undiagnosed know what its like not to be listened to and also to feel like a hipocondriac but you know your own body better than anyone else and know when something is wrong. I waiting to see a rheumy to get diagnosed with some sort of auto immune disorder. Looking like Lupus. Already diagnosed with skin Lupus.
I get rashes but not the malar rash, ibs, headaches, joint and muscle pain and have started reacting to temp changes. Unfortunatly my bloods showed nothing for years untill recently. Make sure ANA tests have been done on your bloods. Have had to basically look on the internet for answers and finding alot of people with the same problems and have had to wait years to get an answer. What I have found is Endometriosis can affect any part of the body and give sim symptoms, mixed connective tissue disorder which is like lupus sle but is a undiagnosed version. CFS can also be misdiagnosed as both disorders. Make a diary of your issues for your next visit it may help narrow things down.

LegacyUser

Hi. I've a male relative with undiagnosed pain. Medication worked fo a while but not anymore. He's at his wits end and has been talking about not wanting to live with it anymore and more explicit along the same lines.

I'd appreciate male perspective in particular. Has anyone found speaking to a psychologist or someone useful (categorically not implying that it's a mental problem, but so that he'd have someone to talk about his fears with/ living with it.) talking to his family elicits anger from him and upset from us and he just walks off or won't listen. Any names anyone can recommend on these lines or any advise gratefully received.

meg3178

Guest442 wrote: »

Hi. I've a male relative with undiagnosed pain. Medication worked fo a while but not anymore. He's at his wits end and has been talking about not wanting to live with it anymore and more explicit along the same lines.

I'd appreciate male perspective in particular. Has anyone found speaking to a psychologist or someone useful (categorically not implying that it's a mental problem, but so that he'd have someone to talk about his fears with/ living with it.) talking to his family elicits anger from him and upset from us and he just walks off or won't listen. Any names anyone can recommend on these lines or any advise gratefully received.

Look for a pain management clinic. The counsellors there will be much better at giving advice / listening and helping with coping techniques.

LegacyUser

Thanks for that Meg.

Sorry didn't mean to hijack the thread.

OP, sorry to hear about your struggle.

Have you been tested for Lupus? I have similar symptoms and I'm going to ask to be tested for lupus in the next couple of weeks. I have no idea why the doctors wouldn't test earlier but they just kept saying I was fine and I definitely didn't have anything serious. AFAIK they only did a full blood count, HIV test and a few other things. I don't think they were taking me seriously. I was going to the GP once a week for a while but now I'm working ridiculous hours I just gave up. And now I'm worse than ever.

For the last 7-8 years I've had
- Fatigue. Can't get through a normal day without a nap. I get 8 hours sleep, eat well, don't smoke, take drugs or drink excessively.
- Joint and muscle pain
- Chest pains
- Chronic IBS-D
- Skin rashes
- Dry eyes
- Chronic cystitis

and so much more.

I'm only 26 and thinking of giving up my job as a teacher because I just don't have the energy for it and it seems so unfair. I'm tired of being told there's nothing wrong with me and that I'm depressed. I'm only depressed because I feel wrecked and sore all the time, who the hell wouldn't be?

kangaroo

Consultant physicians can be good at picking up more unusual conditions, or presentations that are a bit unusual (i.e. it might be a more common condition but somebody's symptoms don't fit a stereotype). A consultant physician is a consultant who knows a bit about lots of things. Of course, some can be slow to make some diagnoses/don't think to consider them e.g. M.E.

@Luciano Faint Silverware are you in London? I get the impression that the NHS is big into rationing tests now to save money. I occasionally point out that this could be a false economy.

In general, I think consultants are allowed run more tests than GPs.

In Ireland, if one has private health insurance, it can be a lot cheaper to get taken in overnight for testing as then tests can be paid for rather than getting them as an outpatient. I find the system a bit ridiculous (i.e. a waste of money) as I think some people are taken as an inpatient who don't need to be in a bed, they just need tests.

spookwoman

Luciano Faint Silverware One of the things about Lupus is it doesnt always show in ana blood test and docs rely on positive ANA. Know a girl gets the malar rash and has negative ANA so having probs getting diagnosis. Take pictures of your rashes as well. Cause sods law when you get to doc no rashes etc.

cltt97

Luciano Faint Silverware, have you ever had a thyroid function test? If not, that's one to get, and also ask them to include test for antibodies (TPO). I have Hashimoto's thyroiditis and I've experienced all your symptoms at some stage. A useful thing to do also it to measure your body temperature first thing after waking, while still in bed, and record this for a while.

Splendour

kangaroo wrote: »

Well, I wish I had been given the diagnosis of Chronic Fatigue Syndrome (or M.E.) earlier; it would most likely have prevented me from going from being relatively mildly affected (being in full time educated) to be severely affected and housebound for the last 17 years - basically the lack of the diagnosis (and consequent mismanagement of my condition as well as the lack of support from not have a diagnosis) I think ruined my life. I, of course, would like to know what causes my condition and ideally how to treat it: but medicine doesn't know the root cause of quite a lot of conditions - medicine is constantly evolving, it's not complete. However, just to be clear, once I got the diagnosis, I didn't stop trying treatments, requesting tests, etc.

That's from saying that everyone with the symptom of fatigue should be dumped quickly into a chronic fatigue syndrome diagnosis and there are lots and lots of other medical conditions that can have that symptom and some of these conditions can be treated quite well already.

At this stage even though I am of the view that M.E. is a symptom, I think I'd welcome it as a diagnoses rather than being undiagnosed as it's very difficult for others to accept how ill you can be if not given a 'label'. Although I appreciate there are many who don't condider M.E. a proper' illness.

Strange thing for me is, about 5 years ago my GP said I had a 'chronic fatigue type thing' and gave me sick notes for about a year so I didn't have to work. Then last year when I was struggling with a college course she wouldn't give me a sick note so I could reapply for college at a later date. Her reason was 'it wouldn't be good for me to stay at home'. My mistake was crying in her surgery so surprise surprise-she assumed I was depressed :mad:

I've recently attended a neurologist and an endochronologist but have been told it could by the neuro's office take up until the new year to have tests and a follow up appointment. I've heard so many people say that once you get into the Irish hospital system it's very efficient-I don't consider the best part of a year efficient!

Torakx

Well i got to this forum searching for health and fitness or diet..couldnt find it so far.
This thread and pretty much all the posters who have posted remind me of my own illness.
Which is a candida albacans infection.
Its causes nearly if not all the symptom mentioned by each poster.
Its fungal and alot of symptoms are due to leaky gut syndrome which is a later stage of the infection when it goes systematic.
The symptoms are so many and so variable, it really depends on each individual case.

My advice is to research this subject and take a hard look at your diets and carb/sugar intake,just incase one of the many posters..or alot of them! have this illness.
Its caused most commonly by prescribed anti biotics.
But can also be caused by a compromised immune system due to other illnesses.
In my case i believe it was a strong dose of antibiotics about 12 years ago.Im starting to recover now that i researched and went out on my own.
Hope the rest of you find some solutions.

Good luck.

ps, some examples of symptoms to get people started.
Fatigue,brain fog,insanity/confusion,aching joints,headaches,cysts through the lympnodes from various organs,Skin irritation(quite common like rashes),asthma,allergies(i was allergic to eggs for 12 years through leaky gut syndrome,now i love em!),carb and sugar cravings,depression,anxiety,indigestion,heartburn,acid reflux,,collic,sinus issues,glycoma or bacteria around the eyes,cramps in intestinal area(due to fungus roots breaking through intestinal wall,causing leaky gut syndrome)..im sure theres more, like IBS and other blanket diagnosis.
But lets just say over 12 years of infection and many doctors and some professors to no avail..i have had about 90% of those symptoms at one stage or another..i am dieting for the candida issue and i have nearly none of these symptoms now.

Oracle

I've been looking into this area a fair bit. I think the biggest problem is CFS sufferers are not believed when they talk about their symptoms. There's a good article here on Wikipedia about Chronic Fatigue Syndrome and its symptoms: https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

I have my own ideas about the causes and cures. I believe vaccines make be implicated as a possible cause. I also believe there isn't any effective cure. A lot of the thinking about a cure/treatment has to do with not accepting it as a genuine chronic condition.

looksee

I have a sister who had Chronic Fatigue syndrome for about 10 years, this was maybe 30 years ago and no-one 'believed' in it. Now I believe a CT head scan can show that there is a problem. Someone may have better information, what I am saying is that there is a way of finding evidence.

I don't know if this is any consolation, but I have been around long enough to know that some of these weird symptoms can eventually go away by themselves. Or at least can be encouraged to go away by simple lifestyle adjustments such as avoidance of various foods, for example. One of my adult children has just been put on an elimination diet for various gut problems, and the main things he has to avoid are things that I gave up, or avoid, from trial and error over the years. We have also established that there is a dairy intolerance or in one case severe intolerance, running through 3 generations of the family.

Oracle

I came across these comments from people who have CFS on the About.com website. They make interesting reading: http://chronicfatigue.about.com/u/ua/symptoms/mecfssymptomsUA.htm
Also coping tips for CFS from the same website: http://chronicfatigue.about.com/u/ua/copingwithfmscfs/10ThingsUA.htm

spookwoman

Had my rheumy appointment on Monday last. He's thinking CFS, Fibromyalgia or Mixed Connective Tissue disorder but also has to take into account I already have skin lupus. Have to wait another 3 months for appointment and maybe start treatment.
Only starting to recover from visit the lighting in the hospital caused me to flare with bad fatigue, aches and pains.

_Whimsical_

spookwoman wrote: »

Had my rheumy appointment on Monday last. He's thinking CFS, Fibromyalgia or Mixed Connective Tissue disorder but also has to take into account I already have skin lupus. Have to wait another 3 months for appointment and maybe start treatment.
Only starting to recover from visit the lighting in the hospital caused me to flare with bad fatigue, aches and pains.

Did he tell you what treatment he might recommend? Does artifical lighting always cause these problems for you?

My mum has a similar problem with light.Sunlight on her skin or light from energy saving bulbs and flourescent lighting makes her very ill and also gives her a bad lupus like rash.She has found wearing heavy 50spf sunscreen has helped her to lessen the severity of symptoms she gets from lighting. She also now always wears a hat if she's out or in areas with strong lighting like the hosp and has minimal skin exposed to light. Small things like changing our light bulbs in the house to the old bulbs that were available before they were taken off the shelves here has really helped. She has been told she seems border line lupus but doesn't get a positive test although some of her other blood work has been suggestive of lupus.The tips about the sunscreen and light bulbs she found from lupus forums but they might help you out too.

Oh another things thats helped her a bit is staying away from perfumes or cleaning chemicals. We use a steam cleaner now instead of CIF etc.
Good luck I hope you find some relief.

Mr Slow

I have IBS-D and have suffered fatigue since running the Dublin Marathon last year, though not at the level of some of you here.

One of our Olympic hopefuls put me onto a supplement he uses when feeling run down but it has completely revitalised me and helped my IBS dramatically, it's called Fatigued to Fantastic and the Doctor who designed it suffered from chronic fatigue himself and donates his royalties to charity. I've found my GP/Consultant tries to treat the symptoms of my condition but this supplement nourishes the system dealing with the root cause. He also has a book that I haven't read yet but it covers a myriad of illnesses and how to treat them with both conventional and alternative remedies.

There is no financial incentive for me in this, I simply hope it helps you as it has helped me.

kangaroo

Mr Slow wrote: »

I have IBS-D and have suffered fatigue since running the Dublin Marathon last year, though not at the level of some of you here.

One of our Olympic hopefuls put me onto a supplement he uses when feeling run down but it has completely revitalised me and helped my IBS dramatically, it's called Fatigued to Fantastic and the Doctor who designed it suffered from chronic fatigue himself and donates his royalties to charity. I've found my GP/Consultant tries to treat the symptoms of my condition but this supplement nourishes the system dealing with the root cause. He also has a book that I haven't read yet but it covers a myriad of illnesses and how to treat them with both conventional and alternative remedies.

There is no financial incentive for me in this, I simply hope it helps you as it has helped me.

Interesting.

The doctor is quite well-known to some people with ME/CFS (on the internet, etc) and has lots of interesting ideas. However, people should be slightly wary that he mentions lots of treatments that are not evidence-based. He got this warning type letter from the FDA: http://www.chicagotribune.com/features/tribu/julieshealth/chi-fatigue-supplements-illegal-drugs-fda-20120504,0,5706746.story

spookwoman

@ Whimsical. It was the first thing I said to him about the lighting was killing my eyes. I'm very carefull with the sun as it is. Because the symptoms have gotten worse since xmas I havent really been out and I have noticed that the lighting in tesco makes my eyes sore but I dont be there long. Now I know better back in Hospital yesterday with sunglasses, factor 50+ and the hood of my cardi up. Seems to have helped didnt get the shooting pains like last time. I've done my own research on uv lighting and where it comes from and the energy saving bulbs uncovered are not good so I get the ones with the outer bulb that cuts down on the uv. I already know and have had the effects of cleaning chemicals.
I know someone else who has lupus symptoms inc the malar rash and she gets the negative ana. Finally found a rheumy that has said she has lupus and is getting treatment. Read a blog of another lady same thing negative ana and lupus runs in her family but for years no one listened to her.

Mr Slow

kangaroo wrote: »

Interesting.

The doctor is quite well-known to some people with ME/CFS (on the internet, etc) and has lots of interesting ideas. However, people should be slightly wary that he mentions lots of treatments that are not evidence-based. He got this warning type letter from the FDA: http://www.chicagotribune.com/features/tribu/julieshealth/chi-fatigue-supplements-illegal-drugs-fda-20120504,0,5706746.story

I wasn't aware of that, all I can say is that I feel much better now that I'm taking the 'Fatigued to Fantastic' supplement, I had my local pharmacist look over the ingredients for conflict with my wife's blood pressure tablets and he said it was a great all rounder for vitamins etc.

Oracle

spookwoman wrote: »

@ Whimsical. It was the first thing I said to him about the lighting was killing my eyes. I'm very carefull with the sun as it is. Because the symptoms have gotten worse since xmas I havent really been out and I have noticed that the lighting in tesco makes my eyes sore but I dont be there long. Now I know better back in Hospital yesterday with sunglasses, factor 50+ and the hood of my cardi up. Seems to have helped didnt get the shooting pains like last time. I've done my own research on uv lighting and where it comes from and the energy saving bulbs uncovered are not good so I get the ones with the outer bulb that cuts down on the uv. I already know and have had the effects of cleaning chemicals.
I know someone else who has lupus symptoms inc the malar rash and she gets the negative ana. Finally found a rheumy that has said she has lupus and is getting treatment. Read a blog of another lady same thing negative ana and lupus runs in her family but for years no one listened to her.

Thats very interesting to me Spookwoman. I have a similar strong reaction to the sun. It completely drains me of energy. Ironic because I love the warmth, its the sunlight that zaps me totally, even if I'm in it for 10 mins. Sometimes I wear sunglasses in supermarkets it helps with the bright lights

kangaroo

I don't have any lupus-like rashes but my eyes are sensitive to bright light: I am housebound with ME/CFS so am not exposed to too many bright lights: I have white blinds which I pull down in a room when I go into it: they let in light but not reflections: if I get a reflection e.g. off the windows of the house across from us, I often get headaches a few hours later.

I wear a baseball cap in the house to keep out overhead lights from my eyes.

In good weather, I used to wear clip-on sunglass covers on top of my prescription glasses, but I found sometimes light/reflections came in from the side so I know wear wrap-around sunglasses.

_Whimsical_

spookwoman wrote: »

@ Whimsical. It was the first thing I said to him about the lighting was killing my eyes. I'm very carefull with the sun as it is. Because the symptoms have gotten worse since xmas I havent really been out and I have noticed that the lighting in tesco makes my eyes sore but I dont be there long. Now I know better back in Hospital yesterday with sunglasses, factor 50+ and the hood of my cardi up. Seems to have helped didnt get the shooting pains like last time. I've done my own research on uv lighting and where it comes from and the energy saving bulbs uncovered are not good so I get the ones with the outer bulb that cuts down on the uv. I already know and have had the effects of cleaning chemicals.
I know someone else who has lupus symptoms inc the malar rash and she gets the negative ana. Finally found a rheumy that has said she has lupus and is getting treatment. Read a blog of another lady same thing negative ana and lupus runs in her family but for years no one listened to her.

Thanks for the reply spokeswoman. What you describe sounds very familiar. I've been horrified at the state that 10 mins in the sun has left my mum in. A rash,terrible headaches and shooting pains throughout her whole body and it continues for days if not weeks. Thats very interesting to know that there are some UV bulbs with an outer bulb,I'll pass that onto her immediately as she'd hoarding old style light bulbs like mad and now she's rationing what's left of the supply. That's interesting you have the chemical problems too. It is also a difficult one to fully deal with.

Did the lady you know with a negative ANA test that has got treatment found it helped?

It's all so confusing sometimes. So hard to know whether to accept what the dr tells you or continue pursuing something different.
Thanks for the reply though, she'll be heartened to know someone else has these seemingly "odd" reactions. People who have not experienced it seem to find it impossible to understand.:)

kangaroo

Some people might be interested in this group:

Spectrumalliance: Campaigning for the approx. 2 million people in the UK adversely affected by modern lighting.
http://www.spectrumalliance.co.uk/

spookwoman

The old crt monitors and tv's are terrible for emitting uv so are halogen bulbs. You can get ones with a uv protector on them. I also find if I dont go out till the evening and still cover up it helps alot. factor 50+ cream, long sleeves and long trousers plus a hat. I usually get headaches from the sun but last week for so I have "aura migraine" so that might be the reason no headache.
The girl I was talking about she hasnt started treatment yet but will be soon as soon as she gets the appointment. She went to a lupus meeting and managed to corner the doc there and showed pics of rash and was told def lupus and get doc to refer to her.
Very true people don't understand unless they live with the symptoms and its amazing the amount of people who are uv sensitive.

_Whimsical_

spookwoman wrote: »

The old crt monitors and tv's are terrible for emitting uv so are halogen bulbs. You can get ones with a uv protector on them. I also find if I dont go out till the evening and still cover up it helps alot. factor 50+ cream, long sleeves and long trousers plus a hat. I usually get headaches from the sun but last week for so I have "aura migraine" so that might be the reason no headache.
The girl I was talking about she hasnt started treatment yet but will be soon as soon as she gets the appointment. She went to a lupus meeting and managed to corner the doc there and showed pics of rash and was told def lupus and get doc to refer to her.
Very true people don't understand unless they live with the symptoms and its amazing the amount of people who are uv sensitive.

Do you know the name of the Dr that she saw by any chance?Is he in Ireland?
We learned the hard way about the Halogen lights, we have them in every single room!We use lamps with ordinary bulbs now. When I think of the years she suffered because of them and we had no idea they were causing it. There should definitely be more awareness of these things. Thank you again for replying .

I've been told that my Vitamin D is very low and I need to have an injection. The nurse seemed to think this alone could be the cause of many of my issues, but they also seem to have lost my ANA result. :rolleyes: I see there is a loose association between Vitamin D and lupus and other autoimmune diseases but it also seems that it's quite common for people in N Europe to be deficient because of the lack of sun.

Anyone else had this?

goat2

Undiagnosed wrote: »

Hey

Not sure why I am posting this. Never really posted on forums before, but just thought I would see what I get back.

For the past 2.5 years my health has being going down hill. The run down of this is:

- Chronic stomach problems. In pain everyday
- Weird pressure in my head. It starts from my neck and then basically my head feel like it's going to explode. Hard to focus, eyes feel like they are going to pop out. I have this every day to some degree.
- Pain in the center of my chest. Not sharp. Dull, I usually hold my chest in for a small bit of relief, but not much. I sometimes feel like I am going to just drop dead as it can make me miss a breath. Really odd feeling. I have this every day.
- I have really bad joint pains everyday.

I am 32. I feel like I am 100. I am fit (go to Gym), slim (I can't put on weight, which I have been tested for as well). Over that 2.5 year period I've had every test you can name and a bunch of x-rays, MRI's. I even had an operation because they said the pressure in my head could be related to my nose, I knew it wasn't, but went along with it. That was a joke. I have been diagnosed with the following:

- Chronic IBS
- fibromyalgia
- Migraine-Associated Vertigo (http://www.mvertigo.org/)

and of course a lot of, your stressed, you work too much, anxiety. I don't talk about this to people anymore as I just get it's probably this or that and it's near impossible to explain how utterly horrible I feel everyday.

Luckily everything bar my health is going well, job, relationship and I am generally happy. But I am in pain, discomfort and feel odd every day. 2.5 years is a long time, but i have no idea if i can put up with this indefinitely. I don't really know what to do. I've seen lots of consultants, changed docs a bunch of times, read lots on the internet (i stopped because it could literally be anything), messed about with diet, just tried to ignore it etc etc.

I literally don't know what to do anymore. My symptoms don't make that much sense and I can see why docs have no idea what it is.

Anyone else have this type of problem before, when they just don't know what to do with an undiagnosed illness?

Thanks for listening

did anyone mention overproduction of acid, it causes the pain you have, as i have this and have to watch what i eat,

goat2

also have yourself checked for lymes disease, there are lots of people now contracting it here in this country and it does not show any symptoms for a long time after the bite of certain insects, if you are a gardner, walker, or into any outdoor stuff, you could be a candidate, i know someone who had chronic headaches and joint pain, had gone to every doctor and specialist, and spent many weeks to months in hospital, and in the end found out by chance that they had lymes, his problem went on for more than a decade, it is no harm getting checked for it, just a blood test at your local gp office, just look into lymes

Alun

If you're in the early(ish) stages of Lymes, yes, a blood test can give a degree of certainty regarding a diagnosis. If it's several years later then things get a lot more tricky, and the tests that there are are difficult to interpret at best. I've been suffering from some, albeit mild, symptoms that have been going on since 2007, and have yet to be diagnosed properly, but I'm convinced that there's a possibility of Lymes despite a Western Blot test coming back -ve as things started after a walking holiday in Germany where Lymes is endemic.