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Discussion Starter · #1 ·
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.
 

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Hello Abi and :welcome:

I would say that yes it is very much worth you pushing further and seeking help as your symptoms are not "normal" and should not be dismissed.

As you have already seen and been dismissed by a couple of rheumies I would make sure that you go to the very top and wait for an appointment with a auto-immune specialised rheumy - you can get recommendations here in the find a doctor section.

I'm wondering, has your ANA been tested again since that time it was positive? And what titer was it at when it showed positive?

Katharine
 

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Hi Abi and welcome to the site. It is a great place to get information and support. Everyone is really friendly. You have suffered for a lot of years. I would start to keep a symptom diary and take photos of any rashes etc that appear. This way when you get to another rheumy you have evidence to present. As Katherine said get copies of your blood tests results. Join us in chat sometime.

Take care

Deb
 

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Discussion Starter · #4 ·
Katharine;554316 said:
Hello Abi and :welcome:

I would say that yes it is very much worth you pushing further and seeking help as your symptoms are not "normal" and should not be dismissed.

As you have already seen and been dismissed by a couple of rheumies I would make sure that you go to the very top and wait for an appointment with a auto-immune specialised rheumy - you can get recommendations here in the find a doctor section.

I'm wondering, has your ANA been tested again since that time it was positive? And what titer was it at when it showed positive?

Katharine
Thank you for your reply, Katharine!

I don't know what my ANA was, only that it was positive - and I only found that out by chance. I'd been to see a private consultant who specialized in diets for allergy-sufferers; she'd asked for a copy of my test results so I paid the GP surgery for copies. I never read them myself - they made no sense to me - but the consultant told me they were all abnormal (I'd been told 'borderline'). When I questioned the GP about this later, I got told that the ESR and antibodies were positive, but not the Rh Factor . . and that's all.

I last had blood tests done about 2 years ago; the ESR was still raised but I don't know about the ANA: I don't even know if it was looked at again. The ESR was explained away because I had a frozen shoulder at the time.

What should I be looking for in the test result? How do I go about asking for a referral to a 'Lupus-Friendly' Rheumi? GP will say 'all rheumi's are Lupus-specialists', and say there's no point in my seeing another when I've already seen 2 of them - and she'll tell me off for 'diagnosing myself with conditions I don't have'. (You can see why I don't go to see her anymore!)
 

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Hi Abi... you have been treated appallingly, you deserve some answers and you deserve to be heard. There is a 'find a doctor' section to this site, might be someone close to you that is good at auto immune probs... or you may have to travel a bit further afield, but if that means getting some answers then do it if you can..... you know your body, you know it isn't right and that you have not been properly cared for or investigated..go for it girl and keep that symptom diary and pain scale score for documented evidence. Plus photos, you can bet your life the day of the appointment you will look fab!!!:)
Push on and know that you will feel better once you know whats happening and you get proper meds to help your symptoms..until then take care XX
Claire
 

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Dear Abi, I would just like you to know that many of us have had experiences like yours. My first Rheumy was just a dangerous fool! There have been many advances in Lupus treatment over the last few years and some non specialised Rheumies have not really kept up. Many of us have had to say Goodbye to useless Docs. If your problem is Lupus or similar you can look forward to an improvement when you start medication. This can be slow at first but is worth it.

It is best with most GPs not to say you think you have Lupus. Try asking if your problems could be auto immune especially if there is any history of auto immune disorders in your family.
Best of Luck,
Lola
 

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Discussion Starter · #7 ·
x_claire_x;554333 said:
Hi Abi... you have been treated appallingly, you deserve some answers and you deserve to be heard. There is a 'find a doctor' section to this site, might be someone close to you that is good at auto immune probs... or you may have to travel a bit further afield, but if that means getting some answers then do it if you can..... you know your body, you know it isn't right and that you have not been properly cared for or investigated..go for it girl and keep that symptom diary and pain scale score for documented evidence. Plus photos, you can bet your life the day of the appointment you will look fab!!!:)
Push on and know that you will feel better once you know whats happening and you get proper meds to help your symptoms..until then take care XX
Claire
Thank you for you kind words, Claire!
The advice about the photos is a great idea - I don't get many rashes because they tend to be reactions to things that I've learned to avoid - I could deliberately expose myself to them, I suppose, but I don't fancy that much, LOL! I can however get the red splotches on my cheeks photographed next time they appear, so I will definitely do that, and I can photo my hands/knuckles when they swell and go red. If the sun ever decides to put in an appearance this summer (!) long enough for hives-type rash that appears on my chest, I can photo that, too.
Pain/symptoms diary I've done before but it was utterly dismissed when I offered it - the rheumi didn't even take it out of my hands.
I'm in quite a bad flare atm; every breath is hurting, and I've realized other things (a 'cramp' in my left calf that appears, lasts for a week or two making my calf very tender, and then goes away by itself; nose-bleeds and cysts or 'ulcers' inside my nose) may also be connected, but I haven't told my Dr about them so I will make a list of everything and prepare for battle!
 

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Welcome to the site Abi.

If your GP is not willing to refer you to another rheumy then you should seek out the opinion of another GP. Sometimes it takes finding the right doctor to make any headway.

Take care,
Lazylegs
 

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Be thinking of you Abi... know you are getting closer to some answers with every effort you make against this disease and those supposedly in the 'know'... take care and let us know how you get on.XXXXXXX
 

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Hi Abi

It is ridiculous that when one is so sick that one has to go through such humiliation at the hands of doctors. You will see from many of the posts on this site that your experience is more the rule than the exception. The most ludicrous outcome of all this is the subsequent whoops of joy when finally one of us gets a diagnosis of a lifelong chronic disease!

As you will see from this site, the Lupus Unit at St Thomas' in London (NHS) (privately also at London Bridge Hospital) is a good source of Rheumies specializing in autoimmune conditions.

From my experience, it is (eventually) worth persevering - not only for health but also for self respect.

Take care.

Merle
 

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Hi Abi,

I feel so badly for you. I will be hoping for the very best outcome on your next dr. apt.

I too, was given the wrong diagnosis for years and years. Please pursue your own health issues. Do not let them tell you it is all in your head.
Keep on..keeping on..friend!

Best Always..
Sandy
 

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Discussion Starter · #12 ·
LolaLola;554346 said:
Dear Abi, I would just like you to know that many of us have had experiences like yours. My first Rheumy was just a dangerous fool! There have been many advances in Lupus treatment over the last few years and some non specialised Rheumies have not really kept up. Many of us have had to say Goodbye to useless Docs. If your problem is Lupus or similar you can look forward to an improvement when you start medication. This can be slow at first but is worth it.

It is best with most GPs not to say you think you have Lupus. Try asking if your problems could be auto immune especially if there is any history of auto immune disorders in your family.
Best of Luck,
Lola
Hi Lola, there is indeed a history of auto-immune diseases; my Mother has Rheumatoid Arthritis and my grandmother had diabetes.

I am beginning to see I'm not unsual in having had symptoms for more than 10 years, and still haven't been dx. I will have to be very careful about who I get referred to - that's IF I can persuade my Dr to do so. Guidelines for GPs of CPS patients include:- "Avoid sending the patient on a wild-goose-chase of consultant appointments and pointless tests" so you can see what I'm up against.:mad:
 

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Discussion Starter · #13 ·
Merle;554362 said:
Hi Abi

It is ridiculous that when one is so sick that one has to go through such humiliation at the hands of doctors. You will see from many of the posts on this site that your experience is more the rule than the exception. The most ludicrous outcome of all this is the subsequent whoops of joy when finally one of us gets a diagnosis of a lifelong chronic disease!

As you will see from this site, the Lupus Unit at St Thomas' in London (NHS) (privately also at London Bridge Hospital) is a good source of Rheumies specializing in autoimmune conditions.

From my experience, it is (eventually) worth persevering - not only for health but also for self respect.

Take care.

Merle
Thanks, Merle - I will make a note of this. I live in Gloucestershire so I did wander about the Bath Rheumatology Hospital, but I think my GP will be reluctant to refer me there. If I'm willing to pay privately, she might be more flexible, believing I was wasting my own funds rather than the NHS's.
 

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Abi, That was what I, and many others, had to do to get started. It can be hard funding private appointments. The dearest factor being the blood tests, so if you have any recent results you may be able to save on this. If you do go to London Lupus the Consultants there will not recommend any tests you don't need. They are conscious it is your money. I have dealt with Dr. D'Cruz privately and NHS for years and he has been excellent at all times. He believes in treating symptoms and if they warrant it but the bloods don't back it he will still treat-possibly calling it a Lupus like illness. My bloods took twenty years to turn positive, so I do know what you are up against.

Make sure you compile a full list of your Medical History, there is plenty of info. here on how to do this. Just a warning though, writing it all down can be much more upsetting than you expect-again people here will identify with you. You may find you need pretty frequent support during this time.
All the best,
X Lola
 

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I think it is worth a re-look and re-testing for other autoimmune diseases given the length and severity of your symptoms. Do your best to see a lupus knowledgeable rheumatologist, there are many that have been recommended in the past for your country and possibly your area in the Find a Doctor forum.

I would strongly advise getting copies of past bloods that have been run to bring with you to your next rheumy appointment highlighting anything that is out of range in particular or relevant (such as the positive ANA and elevated ESRs.)

It never ceases to shock and anger me the way some people get treated by the medical profession. A raised ESR= Inflammation which equals PAIN! A positive ANA (especially if the titre is 1:320 or higher) is a decent indication of some kind of autoimmune connective tissue disorder. Seems like they focused too much on the RF factor being negative which seems strange because only about 50% of rheumatoid arthritis patients test positive for it!

Arrgh. Just venting a bit for you. Good luck and press on. I hope you find some real answers and more importantly some real HELP and improvement sometime soon. Let us know how it goes!
 

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Discussion Starter · #16 ·
Thank you for your support and kind words Maia!
To be honest, my GPs have all thought I have a rheumatic problem, it's the rheumis who have said no. I used to get very upset and angry over it, but it didn't make the problem go away so I learned just to get on with things . . until I discovered Lupus ticked almost every box! My DH still thinks I'm setting myself up for more disappointment . . he may be right, but the alternative is carrying on without a proper dx, and altho Lupus isn't curable, it does
look as if there are things that can be done beyond basic painkillers, which is all I have right now :-(
I have emailed the Lupus Clinic in London to see if they think it's worth my while asking for a referral - I'll let you know how I get on!
Thanks again everyone, you're a great bunch, golden stars, the lot of you! (((hugs)))
Abi
x
 

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You ,are right about the benefit of a diagnosis. Plaquenil does not merely help certain symptoms, but also inhibits the progress of the disease - thereby protecting one's organs from attack.

Merle
 

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Hi Abi and sorry I am late to welcome you.

You have been given great advice so there is not much I can add. You know your body best and if you feel like something is wrong then press forward until you get some concrete answers. The gut instinct is usually right.:wink2::wink2:

I purposely triggered symptoms a while back by going out in the sun just prior to my dermatologist appointment so that he could see what was happening. I was not crazy about the idea either but it was one of the best things I ever did.

I was the one who would have issues and then when I got to the doctor they were suddenly not apparent at all.:eek::eek::eek: Like the toothache until you get to the dentist and then it is gone.:lol::lol::lol:

Pictures really do help with rashes, swollen joints, etc...and keeping a symptom journal is just as important. I wish you well and hope that your appointments in the up coming future are beneficial for you.:wink2:
 

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wow. reading this post really helped me at the moment (thank you all!) it's so hard to keep going and going and going.

i hope you get some answers soon abi. it's such a shame that so many of us are written off for so long... just waiting for one blood test to show the "correct" answer..

:umm:
 

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I second that Shufu,
& Abi, i hope you get some answers soon.
Hugs & spoons.
 
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