Could it be lupus? I am 35.I have suffered from bouts of severe fatigue(i have fallen asleep standing up) and joint pain for years, a skin rash that was previously diagnosed as pityriasis versicolour. B12 deficiency, vitamin D deficiency, jaw pain, hyperkeratosis on one foot. Muscle weakness and breathlessness. The breathlessness was so bad during pregnancy I was at the gp every couple of days begging for help. My second c section revealed abdominal adhesions on my bladder and bowel. No arthritis found on x rays. Night vision problems and sensitivity to noise. Depression and anxiety. Severe headaches in eye socket. I also have multiple dermatofibromas. I find that if I get even the slightest cut on my fingers that they swell up and become extremely painful and stiff. I have pretty bad hyperpigmentation on my face. My mother has rheumatoid arthritis so immune disorders are in the family. I took roaccutane I my late teens. I'm desperate. I will be going back to my GP but need to know this isn't a ridiculous suggestion. I think they are starting to think I'm a hypochondriac!
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Isitlupus
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You need to tell your GP that you think you have lupus. Don't let them fob you off.
I did but because I had the wrong Dr it took me 7.5 yrs to get a diagnoses and only got that when I moved house and changed Dr's. I had a lovely junior Dr and if it wasn't for her I'd still be fighting. She helped me no end and when I didn't have any luck with my local Rheumatologist she got me refered to Guys Hospital.
Thank you so much for your reply! I'm worried I'm over dramatising... I've never had anything really serious wrong with me. It sounds as though most people have at some point been hospitalised but I've just had these lingering horrible symptoms for years.
I got rid of my bad headaches by having reflexology. I was getting them 2-3 times a week sometimes lasting 2-3 maybe 4 days. Since the reflexology I've only had one headache in 14 months. I don't have arthritis but get a lot of joint pain. I take I amitriptyline for nerve pain in my hips and fingers.
I have had lingering horrible symptoms off and on for most of my life. I never even thought of autoimmunity because I was always just treated for things as and when they showed up. Then finally a gp started playing detective and discovered that I was hypothyroid. That didn't solve much for me I have to say so I carried on sleeping more than most people and having eczema and bouts of alopecia until sudden deaths of each parent acted as a calalyst and RA type bilateral joint pain showed up, then finally after being misdiagnosed with RA for five years, Sjogrens showed up in my salivary glands and ANA and explained an awful lot about my life.
You wouldn't be bothering to see doctors if you didn't know something is wrong. Please emphasise the family history and don't give up until you find answers that make sense to you. Best of luck.
Thank you for taking the time to reply. This sounds so much like me, there always seems to have been something found to explain symptoms at the time...low vitamin d levels, anaemia, low vitamin b, stress, pregnancy! But it lingers and nothing seems to stop the same symptoms cropping up again and again. I like you find that a stressful situation brings on symptoms. Your reply has really helped, I sometimes think doctors find it easier to make you feel like it's all in your head than find out what's actually wrong! Thanks again x
I would ask the doctor to do bloodwork for ANA (anti-nuclear antibodies). If the blood test is positive for ANA it means you have an autoimmune disorder. They also can run bloodwork for Lupus SLE. My rheumatologist said there are 2 tests for it. One is a cheap test the other is an expensive test which most insurance companies bulk at paying for, however a lot of times the cheap test does not always show true. Mine did not show until they did the expensive test. Also have them check bloodwork to see if you have a thyroid problem to see if your thyroid is working properly. If not, they have you take medication in pill form to regulate it. I have RA and other autoimmune disorders. They conducted a nerve test to discover I have peripheral neuropathy. I have an irregular heart beat that caused migraine headaches and put me on verapamil which eliminated the headaches. However it lowered my blood pressure too much and they switched my medication to Topamax. Each person is different but I also have Fibromyalgia. I have extreme fatigue and was not getting sleep. I had a sleep study test done. I do not go into REM sleep and was put on 50 mg of Seroquel. Also I had an echocardiogram done and I have Mitral Valve prolapse. I am on Plaquenil to get rid of my rash. Pain is very tiresome. I have a rheumatologist who works with me and got all my blood work done correctly and found out what I have. I also have Mixed Connective Tissue Disease which showed up in my blood work as well. Sending hugs and prayers. May God bless you and help find you the answers you need. Education and knowing what you are dealing with is the key to everything about autoimmune disorders.
Thank you so much for your reply. I have mentioned autoimmune disease so often that I cannot believe I have never had an ANA test done. I am going to see the GP tomorrow and will insist on having this done. Here's hoping I get some answers soon!
I just wanted to give you an update because you have all taken the time to reply. My GP has now given me an urgent referral to a rheumatologist and naproxen for my pain. Thank you for giving me the confidence to seek further help x
I'm really glad to hear that your GP has referred you. I hope that your rheumatology appointment goes well. Keep us updated. If you need any tips for the appointment, you may want to look at our article here - lupusuk.org.uk/getting-the-...
If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
YOU must be Your OWN Best ADVOCATE...no one else..especially doctor will do it for you. It's exhausting all the testing with no answers & making you feel crazy BUT don't give up. Sharing a few spoons for your fight for Dx. I'm 4-years in waiting for mine still...
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