Hello, I'm Suzanne, 43 years old. I have narcolepsy with cataplexy, I've also been recently diagnosed with fibromyalgia in November 2017 after going back and forth to the GP complaining of widespread pain for the last 19 years. However, my symptoms seemed to have changed in the last year. I'm getting recurring swollen glands-every 6 to 8 weeks in the autumn to spring time. The last and worst flare-up was in October 2017 to November 2017. It started off with complete physical and mental exhaustion for 5 days, then a fever, swollen glands in neck, back of head and right groin, incredibly painful joints, especially all of right arm and hand, GP said shoulder was inflamed. I had carpal tunnel as well. My right leg below calf muscle was pulsating with pain. I was bedridden for two days. Full blood count showed no infection. Also for over a year, I've noticed tops of my arms have a mottled discolouration, sometimes purple in colour and always cold to the touch. I also get hot flush type problem. My cheeks, nose and chest go bright red and feel hot to the touch, sometimes accompanied with migraine. I also go bright red around neck and chest every time my glands swell or with sore throat. 3 weeks ago, I had a new symptom where my right hand and forearm went red and hot to the touch and very painful in my fingers and wrist but left arm and hand were normal colour. This lasted for about an hour. I'm now wondering if I have lupus. I'm getting over a nasty ear infection in both ears and my right eardrum is ruptured. My GP is stumped by my symptoms. Does it sound like lupus and what should do? I forgot to mention that I am losing hair on the sides and top of scalp, it's itchy and bumpy, and I'm making it worse by picking at the bumps causing scabs. I also get a lot of urine infections, migraines and during the oct-nov flare up, I had sores in my right nostril on the septum. That comes and goes as well.
This is the rash I get a lot with swollen lymph nodes. I also get bright red rash across cheeks and bridge of nose but that's not dependent on my swollen lymph nodes.
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mumsyme
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Hi Suzanne...my sister had most of your sysmtoms especially the pain in joints hair falling off rapidly...purple to blue toes and finger when u touch it its really cold...she is now diagnosed lupus sle...but u have to check with a rhuematologist to make sure dear...lupus has more than one symptoms...what i read here i found 2 or 3 of my sister symptoms...
My consultant for narcolepsy advised I see a rheumatologist, this was before fibro diagnosis. Having lupus would be quite logical in my case as my narcolepsy with cataplexy is a neurological auto-immune disorder. I just feel that the GP's are going to think I'm a hypochondriac if I say anything. Thanks for replying.
Thats a lot you're dealing with Suzanne....stating the obvious
I can identify with some of your symptoms, I was diagnosed with mild SLE in 2005. My hair was coming out, I was falling asleep all the time with no energy, muscles aches and pains and shortness of breath. I had joint pain too but I'd been diagnosed earlier with arthritis so at times I'm never sure whats osteoarthritis and whats lupus pain. Burning red cheeks and sensitivity to sunlight. Generally feeling unwell and prone to infection. Have also suffered from childhood with white, numb toes and fingers turning red and purple in the cold weather, very painful. He marked it as urgent and I was seen within 2 weeks. 10 blood tests that came back positive for SLE
I think you need to see a rheumatologist which is where the locum sent me after my usual gps failed to get an appointment set up...they didnt take my symptoms seriously, unlike the locum who was very concerned that I hadnt seen someone sooner
my consultant for narcolepsy's phoning me on Tuesday to discuss my meds because I thought I may be allergic to them. But, pulling all symptoms together, I'm going to ask him if he thinks it could be lupus and would he recommend to my GP surgery that I see a rheumatologist.
I've done a bit of research but what I've read is beyond my understanding as I only have a GCSE in science. But, I thought last night that perhaps my narcolepsy type 1 and lupus could be connected
I was diagnosed with lupus 15 years ago. 3 years ago i hada full thyroidectomy and since have been having severe joint pain and swelling glands. Sometimes it looms lime i have a baseball in my cheek or on my shoulder. After rynning test after test i was also diagnosed with sjogrens syndrome. Maybe as your rheumatologist to test you for that. Changing my diet helped alot. O avoid foods that naturally cause inflamation in our bodies. It takes alot of effort to have more better days then bad days. But its worth it. Take it one day at a time. Im sorry your in pain. I hope you feel better soon.
Hi it hard to see details of your rash check out photos of different kinds of lupus rashes on dermnetnz.org new Zealand. Some 'classic' rashes, I have SCLE... Didn't known narcolepsy is an autoimmune, have it in the family, so was quite surprised & did some reading on it. Hope you find answers soon ml
I read yesterday on narcolepsy with cataplexy that there's a debate whether it is autoimmune or not. Apparently it's not an autoimmune disorder but the result of a possible underlying autoimmune disorder. The majority of people I've met in a group also have fibromyalgia or hypermobility, Reynauds etc. The evidence does support this.
I find this information very easy to understand... if you think that you have enough criteria please go see a rheumatologist for a proper diagnosis and treatment.
In this forum you will find very useful information... but please remember we are not Drs and some autoimmune disorders are similar to others, a rheumatologist would need several blood tests to identify which condition you have.
I get the butterfly rash but that crops up whenever, the rash on my neck and chest is always with swollen glands, I get painful joints, nasal ulcer and I've got one in my left nostril now! fatigue a few days before a flare up and I've noticed my hair falls out when I've got these other symptoms. My narcolepsy consultant's phoning today because I thought it might be a reaction to the dexamfetamine for the narcolepsy. But now on reflection, I don't think it is. But, I'll ask his advice on what to do
Fibromyalgia can be commonly diagnosed during early stages of lupus. There are specific tests and criteria that are required in order to make a diagnosis of lupus which you can read here: lupusuk.org.uk/getting-diag...
Flu-like symptoms, joint/muscle aches and pains and hair loss are all common symptoms associated with lupus. To find out what other symptoms are associated with lupus, you can download or request our free information pack: lupusuk.org.uk/request-info...
Lupus presents differently in everybody therefore, it is unlikely that two people will share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms. Periods of remission vary for each individual.
Have you thought about requesting to see a dermatologist?
The description of your facial rash resembles a ‘malar rash’ which is usually a pink or redish-coloured rash which mainly occurs on the cheeks and the bridge of the nose. A malar rash is generally not permanent; it often appears when disease activity is higher or when exposed to certain triggers such as UV light.
Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem; you can read our booklet on lupus and the skin here lupusuk.org.uk/wp-content/u...
We published a blog article on coping with oral and nasal ulcers which you can read here: lupusuk.org.uk/coping-with-...
Hi all, my consultant for narcolepsy phoned today because I thought it may be the dexamfetamine causing allergic reaction. But having thought about symptoms, I've had most of them longer than I've been taking dexamfetamine. I gave consultant brief outline of my symptoms and he said lupus straight away and said I need to go back to GP and ask for an ANA blood test.
Oh and consultant confirmed that people who have narcolepsy with cataplexy do tend to suffer with autoimmune disorders. It's that fault which attacks the hypocretin, resulting in the cataplexy
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