I feel lost

[jaspdt]

Hello everyone, I am new here, my name is Anne and I am a 50 year old female. About a year ago I started to slow down, physically and mentally, I wrote it off to turning 50 and pushed myself to maintain my normal routine. I started to lose the hair on my arms and legs (there are some very fine hairs and a few random patches left) and thought cool, I don't have to shave. And I lost too much weight and then couldn't seem to gain it back. Then, I started to feel foggy in my head and a little unwell, but it was underlying so I pushed through daily, finding foods I could force myself to eat and making sure I was keeping up my exercise routine. Then about six weeks ago I started getting unexplained random fevers, night flushings, bone cold spells where I couldn't get warm for hours, then I'd get so hot I would vomit, all of my muscles hurt, my skin was sensitive to touch, a few sores on the roof of my mouth, I had this massive headache and the top of my head felt swollen and lumpy, I was constantly nauseous like all day morning sickness, fatigued, lethargic, clumsy, I had this weird cough, I couldn't find a temperature in the shower that was comfortable, I felt like every part of me had something wrong with it. I went to the A&E week two, the did blood work, abdominal CT, UA, and everything was perfect. They said probably a virus, check in with your GP. I went to my GP the next week, she being amazing ordered a ton of tests. My ANA was positive, my anti dsdna was positive (14), and my rnp was a high normal/borderline (0.9). I was referred to rheumatology. I couldn't get in for a week and I ended up in the A&E again needing fluids, but they repeated all regular labs (not the ana/antidsdna) and did a chest xray, which were normal, they also did an influenza A, influenza B and Covid test, all negative. Well, I went to see the rheumy and he said, the positive ANA and antidsdna labs meant nothing, the numbers aren't even that high at 14, that I do not have an autoimmune disorder, it is probably gastrointestinal, and he has no idea why my GP even ordered these tests. (PS I also had a full thyroid panel done too, negative, no thyroid issues.) He agreed to redo the bloodwork but said that even if they come back the same it won't change his mind. So, I am left so sad and confused and lost. My symptoms are slowly improving, I am still constantly nauseous, tired, just being alive wipes me out, and I'm depressed. The fevers, chills and flushing are done, at least for the last 3 days. My headache is mild now. I don't feel well ever, even now, not for a single second do I ever feel okay. All I want to do is lay down, daily activities of life seem like an uphill battle. I haven't exercised in six weeks and honestly feel like I may never again, I couldn't imagine lifting a weight or running or dancing, stretching doesn't even feel good, my family and home aren't getting the energy or attention they deserve, I feel like a failure with this doctor basically telling me I have an upset stomach and am wasting his time. I know clinically I don't qualify for a SLE diagnosis, which is fine by me, but am I heading that way? What else could it be? Any advice or direction would be much appreciated. Thank you in advance for your time and help.

[Jmiller623]

Welcome jaspdt!! You found the right place for such a narrative. My advice is get another opinion. You’re symptomatic with a positive dsDNA (and we all know levels don’t correlate with disease severity). There are many on here that have gone through this same process only to be diagnosed with a CTD by another rheumatologist.

The comment about losing hair made me chuckle. My armpit hair fell out and I said the same exact thing.

You need answers. Your quality of life is suffering so someone needs to address this regardless of what they think it is or want to call it. You don’t feel well. You need help. Keep pestering until you find that person. I’m sure many on here will chime in shortly.

Sending hugs. ❤️xx

[Spanielmadlady in reply to Jmiller623]

Hi J your comment on armpit hair made me chuckle.when asked by my rheumatologist if I had any hair loss I thought of my head and said no....it wasn't until recently (years after said appointment) I thought omg my armpit hair and legs...I've not shaved them for years .hope you are doing OK xx

[Spanielmadlady]

Hi.if I was you I'd keep a symptoms diary and take pics.like J said ask for another opinion.it takes on average 6 years to get diagnosis of lupus for me it took 5 years.there is an 11 point criteria for lupus you may find helpful. It's a long road you've just got to keep going and be confident in how you feel.P.s I turned 50 last year....its the new 40 lol xxx

[Smudge4465]

I’m sorry you are feeling so unwell. It’s very difficult to have every test under the sun unless you are an inpatient through A & E and nobody wants that. Many are diagnosed with Fibromyalgia but further down the road realise it’s actually Lupus.

I would suggest a private consultation if you can afford it. I had to go down that route but ended up in A & E a few days later. A& E were fantastic. I’m not sure what else to say but you have our love support and best wishes. There are people out there that want to help you. Keep going ❤️

[Villagelife]

I cant offer any real advice, it sounds like you have been going through the mill. It might be worth researching lymes disease and chronic fatigue syndrome. They are only suggestions though. I hope you get some answers.

[Cowsaresweet]

Believe in yourself and your knowledge of your body. It is very hard when you are an active person and you go to the doctors and they say 'nothing to see here' or in my case put it all down to 'stress'. Do take lots of photos and keep a diary of your symptoms. It is very easy to keep rationalising symptoms to menopause, age, overdid it, but you know your body so listen to it. Looking back l realise l have probably had Lupus related issues for 18 years yet only diagnosed this year. You can request a second opinion even in the NHS. Do also think about your diet, l have started to follow an anti-inflammatory diet and l do think it has helped me.

[Treetop33]

Welcome to the forum. I got diagnosed at 50 too and the problem is also the menopause (which can also give many if the symptoms you describe), almost as if lupus and the menopause were in a dance. You may also have had a virus which prompts the immune system to overreact. In any case, those are some things to think about but the basic facts speak for themselves - you have lupus antibodies and although they are low (about the same as mine right now) you are just as capable of feeling shitty with them. You need a referral to a rheumatologist (and if you can't, go to the London Lupus Clinic in London Bridge) and as other's said, keep a diary. Try Despite Lupus (book) which is really helpful. This forum is exceptionally good and supportive so keep tuning in to learn xx

[Bobbydoodle]

Personally my autoimmune stuff all kicked off when my hormones went wild at about 46 ( perimenopause). Hormones can’t be measured by blood test they are measured by symptoms so are you taking any form of HRT? Could that be a starting base if not to get any hormonal imbalance back in check?

[Hidden]

Welcome snd hugs. I have Stills not SLE but it is an AI disease and yes it’s been worse since the menopause, just thought I’d add that as there does seem to be a link. Good luck, we’re all here to listen 🤗

[CavendishCool]

Hey there,Ditto to everything you've experienced, but I have been fortunate with my GP who diagnosed fairly early Lupus, which of course is good for validation, but is awful for trying to live with it on a day to day basis. I am a shadow of my former self and my achievements both mentally and physically. I really get impatient, frustrated and tearful and hundreds of other emotions along with the brain fog, with how the roulette wheel turns on what seems to be a minute by minute basis. The Hydroxychloroquine prescribed makes me feel terrible and I have become a moaning, ungrateful, cantankerous old 🐉. Maybe we should just open up a Moan page. If one more person tells me I'm lucky at my age, that is all I have, then quite frankly, I might get very cross. It doesn't feel lucky to me at just 61 to have something that debilitates my mind, body and soul so frequently that some days, I feel like I would welcome the other alternative, especially when I still have to work, care for my brother who has cerebral palsy and the other myriad of things. Anyway, on a positive note, the only way I can exercise apart from my daily stumble, my feet stop working on some days, is by practising chair yoga (very bad day) and restorative or yoga Nidra on a medium day and Yin yoga on a good day, which is of course still nothing like where I was 3 years ago. No point dwelling in the past, but I really do empathise with you. Unfortunately, empathy is not really much help when you're dragging yourself around. As Churchill once said apparently "When you're walking through hell, just keep walking!" I leave you to do what you will with that little moniker.

[MrsMarigold]

Hello jaspet. I’m sorry for you to beIn the diagnosis phase of lupus or another

Autoimmune condition. Being American,

Our health system is different and I’m still trying to understand the language of yours

And where you can go for help or not go and why. That being said, dsdna is very

Specific to lupus. Given your other clinical symptoms your unwellness is indicative

To lupus. It would be helpful to have your

Hormone levels checked. I had lupus for

Years, possibly 20 or more before diagnosis

And menopause was a nightmare of chills,

Lethargy, depression, brain fog and more.

I was finally diagnosed in 2016 in my late

50s. After a visit to a very famous hospital

In the states, with a prominent rheumatologist, positive ANA and DSdna

And all my own clinical symptoms lol no

Leg or armpit hair, she declared fibromyalgia and that’s that and don’t say

Another word/ugh/I didn’t like her😏Long

Story short, an excellent local rheumatologist looked at all the data, my

Pictures, my diary and did more testing.

Finally. He called it Lupus and informed me that everyone with the disease is different

And different looking. Some have malar

Rash and some don’t. And more. Anyway,

I’m not trying to make this about me. If

I had known about a forum like this I would

Have been diagnosed sooner. Wish you the best and a better Dr. soon.

[CecilyParsley]

Hi Anne and welcome. I am so very sorry that you are feeling so unwell and of course you are depressed. Your GP sounds wonderful and wanting to help so go back to her and explain how desperate you feel. Autoimmune diseases take an awful long time to diagnose and they will want to rule everything in or out. I am lost as to how the Rheumatologist came up with stomach issues??? Has he referred you to a Gastroenterologist?You need to be kind to yourself now, you are sick and need the support of your family and friends, the doctors just haven’t found the cause yet. Xx

[StriatedCaracara]

Hi Jaspdt, and a big welcome 🙂

I joined this group very recently after a positive ANA test result - 1:320 - speckled pattern. I'm awaiting my first rheumatology appointment - this week moved from July to August due to lack of staff.

I just emailed the Samaritans as I was having problems comprehending things like this that I'm experiencing

[e-mail]

I have found this HealthUnlocked Lupus Group to be wonderful - a life saver.

I've watched so many web seminars in the last few weeks intended for doctors - yesterday I watched a 2.5 hr one on the Complement system.

At the end there was a bit about lack of C3 and C4 in lupus and a knock on effect - making fighting gram positive bacteria more difficult. Sometimes it can be a low grade infection, eg strep, making things extra bad.

My CRP and ESR are always normal when measured. Perhaps the timing of a test is wrong. Perhaps I take too much aspirin. I generally don't feel I get good answers or any treatment and end up taking soluble aspirin (300mg in 1.5 litres water - one each evening, drinking through the night into the next morning). The last few days this has not worked well enough...it did previously..

I think there may be a trend to minimalization in terms of provision of checks, drugs, time, having face to face appointments / being examined.

It is key to find the exceptional individuals - who care, and who treat others as they would like to be treated themselves and who give us the listening ear and tests we need.

Thinking of you. Be persistent. Find who your allies and friends are. What you have experienced is being replicated all over the land. Probably there are new battles going on within our healthcare system which we are experiencing first hand, before others do.

[alice_sportyauthor]

As others have said their is a lot of similarity between the systems of Lupus and the symptoms of menopause and you are in the age bracket. If you ever work out what is causing which, please let me know!

I have no idea what the numbers on my diagnosis was, but I already had an auto immune disorder being treated by haematology.

Keep taking notes/pictures/diary of symptoms and keep going back.

My GP was pretty cool, she thought I had rheumatoid arthritis, I read it up and ended up on the Lupus page and thought that sounded a better fit and told her; she said she could see why I said Lupus but stuck with her diagnosis.... we had a 10p bet on it!

We are not medically qualified, maybe you have Lupus, maybe you don’t, keep going to the doctors until you are happy with the answers.

[Hidden in reply to alice_sportyauthor]

I have STILLS (RA) but all research leads me to Lupus sites!