Need peoples answers to their signs and symptoms and how long it took them to be diagnosed with lupus

Im worried I may have lupus or some form of an immune issue going on...just searching for help,feedback and advice

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I went to my g.p. With really severe fatigue and muscle aches particularly in my neck, shoulder blades and back. Legs and arms have no strength when lifting and bending. My legs feel like lead weights using stairs. Get very tired easy. Hard work doing smallest of tasks like hanging washing out, combing my hair etc due to weakness. I had a high e.s.r. Rate which I was then suspected to have an autoimmune disease as I also had two viruses which wiped me out for six weeks at a time. Went onto hydroxy but I had I.b.s. Flare up amongst other things. To cut the story short. Been back to Rheumy clinic and now suspect fibromialgia. I don't have a rash or anything like you have in lupus. Still no firm diagnosis and not on any medication as doc wants to see me because of meds Rheumy wants to try me on. Hope this helps a little. If I can help further, let me know. I am so confused in what I may have. Got my next appointment on 21st with Rheumy and doc 22nd which should be other way around really. Am going to try and change it.

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Thank you. I hope you figure out whats going on with your health. Sorry you are going through this..i know how it feels the pain etc it sucks

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I always make an appointment with my GP for the day after my appointment with my rheumy so I can discuss anything I was unsure about at my rheumy appointment, I have a fab GP who allows me more time with him than my rheumy so I use it to its advantage and he explains everything to me :) xx

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Hey Sm86,

Overall from going to my gp and then getting diagnosed was about 10 months. My route was a little unorthodox however, as I didn't take my symptoms seriously but my GP did.

I've had raynauds for about 8 years now and went to the GP in March because I couldn't handle it anymore without medication. I have fatigue and joint pain but I always put it aside as stress.

I had my blood tests taken and referred to rheumy from there. Unluckily I had my first flare two weeks before the appointment but I guess it was good timing as my gp managed to get my esr etc checked.

I think I got lucky with my GP being concerned with the raynauds. If he didn't refer me, I don't know how long id be waiting.

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Whats GP?

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GP is short for General Practitioner which is what we call our local doctor that we are registered with for primary healthcare in the U.K. They treat all the usual everyday illnesses & minor problems & can refer us to specialists/ hospital tests, scans etc

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Hope this link to the Lupus UK website’s Signs & Symptoms info helps you as much as if has helped many others

lupusuk.org.uk/medical/youn...

🍀🍀🍀🍀 coco

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Thank you

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Hi, I was diagnosed with Fibromyalgia in 2013 and ME in 2015. At the end of 2016 I felt that something was different and I thought it was probably the Fibromyalgia getting worse. My GP checked my bloods and I was very vitamin deficient, although I try to keep my vitamins topped up and had high inflammation rates. I was sent to a rheumatologist who thought something autoimmune was going on. Last year I had lots of episodes of having high inflammation and being put on steroids, it would then get better and once I came off them the high inflammation levels would come back. I have the Lupus ‘malar’ butterfly rash, neck and chest rashes, Raynauds, migraines, IBS and gastro issues, extreme fatigue and quite a lot more. I saw the rheumatologist again last October and she said she suspects lupus although none of my lupus related tests have come back positive yet. It can be a long road to get a diagnosis. There’s such a thing as seronegative lupus where you are diagnosed without the specific blood tests being positive. Although some doctors do not believe in this term. I hope that was of some help, I have gained so much support and information from this forum so hopefully you will too!

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I have had every single symptom you mentioned and many, many more. I was called a hypochondriac my entire life since I started getting sick and could not find anyone who believed me. I would leave doctors offices bawling my eyes out because they wouldn't even listen to me.. it took me over 10 years to get my diagnosis after having my 3 boys I finally found a GP who recognized the signs and Finally believed me suspecting I had Lupus. I found out though, I not only had Lupus, but I have Mixed Connective Tissue Disease (which is 3 automimmune diseases: Lupus, Polymyositis, & scleroderma), also chronic fatigue syndrome, fibromyalgia,rheumatoid arthritis & countless other things not autoimmune but caused from all the automimmune diseases I have... Your muscle weakness and all that could def be fibromyalgia but also sounds a lot like Polymyositis which is another automimmune disease like Lupus. I am 30 & take care of 3 boys every day and most days feel like I can hardly get out of bed and no one understands in my family just how hard it really is just to make it through my days. I denied medicines I was encouraged to take and I wish I hadn't because I just keep getting worse so I would def recommend you at least try them maybe they will keep the disease from further progressing like mine has. If you have any other questions I would love to have someone to talk to about what I have experienced. Mine all started with little things like Ibs, heartburn, acid reflux, I had to have my esophagus stretched at 18 yrs old, constipation, nausea & vomiting, fatigue, bruising easily, weight loss, and then have progressed tremendously over the years. I had Epstein Barr virus when I was in high school and a few years later heliobacter pilori (H pilori) & haven't been the same since... Viruses can turn your immune system upside down and Lupus will cause your body to start attacking itself. My body is so allergic to itself if I don't take antihistamines every day I itch all over and end up with rashes and welts just from scratching but I don't have any of the outside symptoms like the butterfly rash or any cutaneous lupus symptoms besides that. Every single case of lupus is different though. I hope you get it figured out but just stay persistent and don't give up and always after you see your rheumy take your results and let your general doctor explain them because I went years without knowing what all was wrong with me because my rheumy didn't even tell me what was wrong he put it all in my chart but never told me anything I went almost 5 years thinking I only had Lupus until I signed into my online chart and read all of my other diagnoses!

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Lupus can take an average of 7 years to be diagnosed, which is really awful! Keep speaking to your gp and be as open as possible. If they’re not supportive try going to a different gp and fight to go to a rheumatologist, that’s the fastest way to get help for lupus and auto immune. It can be a long process so stay positive, get as much support as you can and remember that your pain is real, don’t second guess that :)

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