Hi all,
I'm new to this forum, so please bear with me! My story is long (aren't they all) and I am used to people 'switching off' when I talk about my health, so I've learned not to bother over the years . . . but I'll do my best to be as clear as I can!
I'm 42 and I've been disabled with joint-pain for the past 12 years.
As a child, my health was fine until I reached 11 years old, when I began to get migraines. I was told to cut out food additives from my diet; the migraines eased for a while, then came back during my teens along with 'IBS' symptoms, and continued through into my twenties. At this time a clear connection to the pill was noticed. I stopped taking the pill and the migraines stopped . . I also got pregnant! My first pregnancy ended in pre-eclampsia and a small-for-dates prem baby born by c-section. My second went full-term but I also had pre-eclampsia at the end of it.
3 years after my 2nd/last pregnancy I had a flu-like virus that kept me bed-ridden for over a week; the other symptoms gradually went but aches and pains stayed. I was tested for arthritis; it came back negative. A year later the aches and pains were still there; I was sent to a Rheumi who diagnosed Chronic Fatigue Syndrome, despite the fact I had 'slightly' raised ESR, postive ANA, and raised LFTs (x-rays were clear and Rh Factor was neg). I was never happy with this dx, and neither was my GP who changed it to Fibromyalgia. I wasn't happy with this either, as I dont notice exercise being a cause of flares and I understand this to be 'crucial' for an FMS dx.
Then 2 years ago another GP urged me to see another rheumi as my ESR was going up. The new rheumi said it 'wasn't high enough' to dx RA etc, and instead dx me with Chronic Pain Syndrome, which I'd never heard of. I later discovered this is diagnosed by "6Ds" - Disability, Drug Misuse/addiction, Dramatization of Complaints, Dysfunction beyond symptoms, Depression, Dependency". Since this dx I have been systematically dismissed by GPs (and a Pain Consultant who was really nasty!) as a hypochondriac drug-addict . . . and perhaps not unreasonably I stopped going to the Dr. My view is that I have enough to deal with, without being insulted into the bargain!
Recently my family have noticed red splotches appearing on my cheeks when my joint pain flares. A friend told me this could be a sign of lupus so I looked the condition up on the internet today . . I was astounded at how many of my signs/symptoms seem to fit! I have pain in most of my joints (knuckles swell and get red, but go down again later), aching muscles, dry eyes, sensitive bladder, swollen ankles & fingers, cold fingers/toes/nose, pain when I breathe (GP gave me a salamol puffer but this doesn't help), nasal 'cysts' or ulcers which often occur just before my period (menstrual cycle unpredictable); very sensitive skin which is dry and itches, constant digestive problems (diarrhoea, cramps, nausea, constipation), fine-flyaway hair that breaks easily (everyone else in my family has thick hair). When I'm in flare I'm exhausted, often 'wobbly' like I need sugar (altho sugar makes no difference). Flares seem to occur just before my period, or during unsettled weather, or after stressful incidents - and everything gets worse at once. I notice the glands in my throat often feel tender when I'm in flare - sometimes referring through to my ears. I get what I term "Icepick migraine" - sudden, very localized, very acute pain in one side of my head that goes after a few seconds, ie, just like being hit with an ice-pick! I'm allergic to septrin (causes a rash), nickel (rash), pollen (itching red eyes, sneezing, rash), fruits and raw veg (itching of my lips, inside my mouth and down my gullet where I've swallowed!), sticking plasters (rash), and many facial creams/lotions/soaps etc (rashes). My stomach is sensitive and I can't tolerate NSAIDS, not even in rub-on-gel form. I can't tolerate cow's milk and I'm borderline coeliac's (wheat-allergy). I have a few 'blister-like' permanent spots on/around my nose; at one point I had these appearing elsewhere on my body but they vanished again of their own accord after about 4-5 years.
My question is this:- Is it worth me pestering for yet another opinion, or are my symptoms too vague for lupus to be a possibility? I havent noticed a 'distinct' problem with sunshine, but then again I don't sit out in the sun because my skin is so sensitive and I tend to burn very easily (I'm pale-skinned with lots of moles, so a 'skin-cancer' risk). I am very reluctant to be faced with yet another put-down by a Dr (btw, I don't drink, smoke, or take any drugs other than my prescription, and I NEVER have!) but at the same time, after nearly 15 years of disability/pain, I would love to finally have a name for what's been happening to me!
I look forward to reading your replies - thank you in advance for any help/suggestions you can offer me.
I'm new to this forum, so please bear with me! My story is long (aren't they all) and I am used to people 'switching off' when I talk about my health, so I've learned not to bother over the years . . . but I'll do my best to be as clear as I can!
I'm 42 and I've been disabled with joint-pain for the past 12 years.
As a child, my health was fine until I reached 11 years old, when I began to get migraines. I was told to cut out food additives from my diet; the migraines eased for a while, then came back during my teens along with 'IBS' symptoms, and continued through into my twenties. At this time a clear connection to the pill was noticed. I stopped taking the pill and the migraines stopped . . I also got pregnant! My first pregnancy ended in pre-eclampsia and a small-for-dates prem baby born by c-section. My second went full-term but I also had pre-eclampsia at the end of it.
3 years after my 2nd/last pregnancy I had a flu-like virus that kept me bed-ridden for over a week; the other symptoms gradually went but aches and pains stayed. I was tested for arthritis; it came back negative. A year later the aches and pains were still there; I was sent to a Rheumi who diagnosed Chronic Fatigue Syndrome, despite the fact I had 'slightly' raised ESR, postive ANA, and raised LFTs (x-rays were clear and Rh Factor was neg). I was never happy with this dx, and neither was my GP who changed it to Fibromyalgia. I wasn't happy with this either, as I dont notice exercise being a cause of flares and I understand this to be 'crucial' for an FMS dx.
Then 2 years ago another GP urged me to see another rheumi as my ESR was going up. The new rheumi said it 'wasn't high enough' to dx RA etc, and instead dx me with Chronic Pain Syndrome, which I'd never heard of. I later discovered this is diagnosed by "6Ds" - Disability, Drug Misuse/addiction, Dramatization of Complaints, Dysfunction beyond symptoms, Depression, Dependency". Since this dx I have been systematically dismissed by GPs (and a Pain Consultant who was really nasty!) as a hypochondriac drug-addict . . . and perhaps not unreasonably I stopped going to the Dr. My view is that I have enough to deal with, without being insulted into the bargain!
Recently my family have noticed red splotches appearing on my cheeks when my joint pain flares. A friend told me this could be a sign of lupus so I looked the condition up on the internet today . . I was astounded at how many of my signs/symptoms seem to fit! I have pain in most of my joints (knuckles swell and get red, but go down again later), aching muscles, dry eyes, sensitive bladder, swollen ankles & fingers, cold fingers/toes/nose, pain when I breathe (GP gave me a salamol puffer but this doesn't help), nasal 'cysts' or ulcers which often occur just before my period (menstrual cycle unpredictable); very sensitive skin which is dry and itches, constant digestive problems (diarrhoea, cramps, nausea, constipation), fine-flyaway hair that breaks easily (everyone else in my family has thick hair). When I'm in flare I'm exhausted, often 'wobbly' like I need sugar (altho sugar makes no difference). Flares seem to occur just before my period, or during unsettled weather, or after stressful incidents - and everything gets worse at once. I notice the glands in my throat often feel tender when I'm in flare - sometimes referring through to my ears. I get what I term "Icepick migraine" - sudden, very localized, very acute pain in one side of my head that goes after a few seconds, ie, just like being hit with an ice-pick! I'm allergic to septrin (causes a rash), nickel (rash), pollen (itching red eyes, sneezing, rash), fruits and raw veg (itching of my lips, inside my mouth and down my gullet where I've swallowed!), sticking plasters (rash), and many facial creams/lotions/soaps etc (rashes). My stomach is sensitive and I can't tolerate NSAIDS, not even in rub-on-gel form. I can't tolerate cow's milk and I'm borderline coeliac's (wheat-allergy). I have a few 'blister-like' permanent spots on/around my nose; at one point I had these appearing elsewhere on my body but they vanished again of their own accord after about 4-5 years.
My question is this:- Is it worth me pestering for yet another opinion, or are my symptoms too vague for lupus to be a possibility? I havent noticed a 'distinct' problem with sunshine, but then again I don't sit out in the sun because my skin is so sensitive and I tend to burn very easily (I'm pale-skinned with lots of moles, so a 'skin-cancer' risk). I am very reluctant to be faced with yet another put-down by a Dr (btw, I don't drink, smoke, or take any drugs other than my prescription, and I NEVER have!) but at the same time, after nearly 15 years of disability/pain, I would love to finally have a name for what's been happening to me!
I look forward to reading your replies - thank you in advance for any help/suggestions you can offer me.
