my 19 year old daughter has had a probable diagnosis of fibromyalgia!
Think this is a diagnosis you get when you want a diagnosis but they still aren’t sure!
We have lupus in family. My daughter is constantly ill, the poor girl doesn’t hardly get a break! If it’s not swollen glands/tonsils in her neck along with,ulcers, joint pain, earache. She gets feeling of nausea, heartburn, extreme exhaustion, malar rash every now & then, brain fog, always catching cold, flu. Wakes up as if she is coming out of anaesthetic, the list goes on! She struggles to go to work , has had a written warning as she has so much time off but loves her job. Comes home from work & sleeps from 3-7! She hardly goes out.
She really doesn’t have much quality of life!
we have seen several rheumatologists, ana negative!
We are finally going to see a private consultant this week who specialises in auto immune diseases to see if we can get anywhere to help her as the only meds they give her is amitripiline to help her have a good nights sleep !
Does any other young girls on here experience the same and has a lupus diagnosis?
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Claudette1
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That’s so terribly demoralising for you & her 🤗…..fingers crossed the Consultant you’re seeing will be understanding, proactive, thorough & helpful.
I personally didn’t get on with Amitriptyline, (gave me disturbing hallucinations) so now have Diazepam which is effective for me without any side effects. (Some GPs are reluctant to prescribe it though). Poor sleep is so wearisome especially if she’s got work the next day 🥱
Whilst many of us would prefer not to have any illnesses, (I know I would!), for me the hardest part is when I have blood tests/investigations & they don’t show anything wrong - plays tricks with my mind! I know I’m not imagining my symptoms but want an answer so I know what I’m dealing with; The frustration of experiencing endless pains, sensations, illness & ‘unwellness’ takes it toll. Getting a diagnosis & understanding what’s wrong with me sort of helps to make sense of it all, even though I hate it! My ANA isn’t always positive & bloods are usually ‘in range’ but I still got a Lupus diagnosis because 1st ANA confirmed it.
I am currently awaiting results for 3 x skin biopsies for the various rashes etc I suffer. I want to know if they’re connected to Lupus or are something else as conflicting the Dermatologist I saw said she doesn’t believe I have Lupus!
Some years ago I did an IMPACT, (Inter Muscular-disciplinary Pain & mindful based Cognitive Therapy) course at local Rheumatology Hospital. It was run by a Psychologist, Physiotherapists & Rheumatology Doctors; It was for people suffering & living with chronic illness & pain conditions. At that time I didn’t have the Lupus diagnosis I now do but had many orthopaedic problems & injuries (still do!). Attended once a week for 6 weeks & I found it very beneficial, maybe ask if your daughter could be referred to one.
I’ve mentioned to you previously that I was diagnosed with ME in my early twenties, (I’m almost 58 now), which completely floored the extremely sporty, active, physically fit me & lead to depression & altered lifestyle.
I did manage a professional medical career & had some better days…..
I realise that reply hasn’t offered many helpful suggestions, sorry xx … I just wanted to share a few words of support to you & your daughter 🌸
That's interesting about amitriptyline It gave me disturbing dark dreams too. I thought it was just me so good to know I'm not the only one. I switched to Gabapentin and all fine, it knocks me out so I get a good sleep. I am yet to see if it helps with neuropathic pain as its only been a couple of weeks since I started it.
Hope you get some relief with the Gabapentin, I didn’t get on with it at all! Made me feel like I’d been anaesthetised & I couldn’t function at all…. Bodies & medications, we’re all different x 🙃 x
Sorry to hear your daughter is struggling so much, and its a worry to you cos you love her. I think worry, concern and frustration leads many people to a private consultation. I did the same. The key issue is making sure the private consultant does NHS work too and after the consultation they move you as a patient onto their NHS listing. Otherwise you could end up paying a lot of £ , which personally was not in my budget. My compassionate private consultant was very open to this. Lupus is complex, no one test to determine a diagnosis. Unfortunately many lupus sufferers whatever age have a fibromyalgia diagnosis first which can be frustrating and a smoke screen. I was 56 when diagnosed and had 10 years of misery before, with symptoms similar to your daughters. You feel yr symptoms are not life threatening enough to go to A & E but they affect your quality of life very very much. On a positive note …….. after diagnosis, a great rheumy and dermatologist working together I have a good quality of life and glad to take the meds that have changed the course of my life. There is much to live for, couldnt say that 10 years ago. So keep going, and best wishes for a speedy outcome, please give yr daughter a hug fro me ❤️
Were you checked for lyme disease? Connective tissue disorders? GI problems could be from gastroparesis and i would reccomend you go to a Gastroenterologist +
My sons GF was diagnosed with pots in late teens. They thought stills disease at first.
ANA is a tricky one. I've only ever had 1 positive ANA. I know there have been other times I would have tested positive, sadly not at the hospital appointment at the right time to catch it. I've asked if I can have a bood form to go when I'm in a flare. Anybody would think I was asking for a rocket to take me to the moon 😀
Sorry to hear about how difficult it’s been! I don’t have any answers but I am also 19 and in a very similar position to your daughter by the sounds of it. Very similar symptoms and ANA negative. I had to wait months to see NHS rheumatologist over the summer when I was practically bed bound so ended up paying for a private consultation with dr Kaul-he was lovely and talked through everything. He gave me some prednisolone to try which helped massively and suggested trying hydroxychloroquine after to see if it makes a difference. He said rheumatological conditions can take years to diagnose and soemtimes takes a while for antibodies to show up in the blood.
I have since been seeing an NHS consultant and honestly has been awful-lots of gaslighting and being dismissed so having to fight to back myself up. They’re obviously not all like that but I think due to negative ANA I don’t fit into the boxes so she’s struggling and finding me annoying haha. I have been diagnosed with HSD/hEDS and dysautonomia which can have some crossover symptoms especially the joint pain and fatigue have you looked at that at all? But for me there are a lot of symptoms that don’t fit and there seems to be something else going on.
Also if you look through some of the posts on here there are loads of people who have negative ANAs and then had them turn positive after years of symptoms.
we have been to NHS rheumatologists & like yourself going around in circles & not going forward, so private is, just to see if we can get some better meds prescribed to help her or someone that can look down some different avenues!
Thank you for all you useful information & I really do wish you the best in your journey ❤️
I forgot to mention that I posted a short video recently called, ‘Tame the Beast’ which may or may not be helpful to you & your daughter (it’s on my profile). It might not be totally appropriate for what she’s suffering but the chap who made it, (Lorimer Moseley) has many others to view plus lots of written articles. x 🌸 x
Hello Claudette, I’ve just come across your post and I hope that your daughter was listened to and taken seriously with the private consultation. So sorry to hear how she’s been suffering, I know how helpless this can make you feel as a mother. My daughter’s now 23 and her story sounds exactly like your daughter’s, she’s been ill like this since her teens. She still has no diagnosis and feels so demoralised with the medical profession that she just self medicates and gets on with life as best she can. The one thing that I do think has helped a bit is wearing spf50 all year round, not sure if this is something your daughter does? We ended up going down the private route too. The 1st consultant we saw totally dismissed her in the most patronising way because her blood tests were negative (despite having positive ones 8 years ago which were never investigated). The 2nd one (professor) was much nicer, but washed his hands of her because she didn’t want to take hydroxy because her dad has severe psoriasis (& has to have UV light therapy to treat). He said no point in attending his hospital’s NHS clinic (centre of excellence ) for support because they’d only tell her the same thing. GP then referred to St Thomas’ who rejected it because she’d seen private consultants and said she should go to the professor’s hospital as it was nearer - catch 22. I do hope your daughter has had a much better experience. One of the posters here mentioned Dr Kaul at London Lupus Centre and I’ve heard that he’s very good & doesn’t base diagnosis solely on blood tests. Perhaps if my daughter ever gets desperate enough and feels she’d like to re-engage with the medical profession, we’d try him. I think it’s so important that these young people are able to access health professionals for support in managing their symptoms too on an ongoing basis and this isn’t offered in the private system, only NHS if you’re lucky enough to be somewhere like St Thomas’. Best of luck with getting definitive diagnosis. 💕
My sister had a similar experience, she had lots of “general” symptoms like debilitating fatigue, pain, some rashes and mouth ulcers that could have been lupus or potentially something else that started at 18. She saw gastro and rheumatology on the NHS, but her ANA was normal and there wasn’t anything standing out in the bloods or other tests (ruled out IBD too). It was really frustrating as it seemed like the doctors were saying “your results are normal so you should be fine”. It led to her being diagnosed with depression as well. She then saw a rheumatologist privately who actually had the time to review it all (previous appointments were 15 min max, this consultation was 45 min), listen and examine her properly. The private consultant found she met the criteria for fibromyalgia and could rule out the other potential conditions that matched the symptoms by reviewing the diagnostic criteria for each condition. (There is a specific list of diagnostic criteria for fibromyalgia, just like there is for lupus). This let her access better pain relief from the GP, and they sent her on a course for ACT therapy which helps you cope with long term conditions. This actually helped a lot, and some of the symptoms improved. A few years down the line, she no longer has a fibromyalgia diagnosis or needs to take those painkillers after she had treatment for severe anorexia, so in hindsight the anorexia specialist thought it was probably related to the anorexia. (She developed anorexia after gastro said she had IBS as well and she got put on the FODMAP diet and took it too far.) She’s now studying to be a nurse at university and her anorexia is in recovery.
I’m not saying that your daughter has an eating disorder, what I’m trying to say is:
* Fibromyalgia might not be the diagnosis that stays, but it might be one she has for a bit, until the test results change. A diagnosis of fibromyalgia does not mean it’s “all in her head”. It is a very real condition.
* Keep fighting for her and find a doctor who has the time or will make the time to listen to her and review everything. Sometimes you need to go private to find this. Remind her that she’s not making a fuss, every person deserves to see a doctor who will listen to them. (My sister really struggled to accept she deserved better care).
* If fibromyalgia is the diagnosis it lands on for now, make the most of it and explore all the treatment options.
* She should be monitored, as she might meet the criteria for something else e.g. a connective tissue disease, RA, SLE or another condition later. For some of these conditions, it is possible to be “seronegative” (i.e. have negative blood tests) and still have the AI condition, but you have to meet enough of the diagnostic criteria.
I hope you get some answers and find something that helps her x
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Advice please on rash
Mom of 15 year old. Still no diagnosis. New to group
my daughter as got sle lupus and itp blood disorder
Does anyone else have a sibling, or close family member, also effected by auto-immune disease?
Could this be Lupus?
