Do I have Lupus or Fibromyalgia???

[Abarna]

Hey all!!!!! I was diagnosed with lupus in November 2023 in Sri Lanka after consulting three rheumatology specialists. They confirmed the diagnosis, and I was prescribed medications, including methylprednisolone, methotrexate, and hydroxychloroquine.

Recently, I moved to the UK and started consulting a rheumatologist here. They conducted several blood tests, and the results showed:

ANA: Positive, Titre 1:80 (Speckled pattern)

IgM: 2.81 g/L (High)

Despite my symptoms—severe joint pain, fatigue, butterfly rash, mouth ulcers, stomach pain, chest tenderness, heavy breathing, eye pain, and lower abdominal pain—the doctor here is uncertain about my lupus diagnosis. They suggested that I may or may not have lupus and advised me to stop all medications for four months to monitor my symptoms.

Now, without medication, my pain and fatigue have worsened significantly. I feel completely drained—physically, mentally, and emotionally. Simple daily tasks have become unbearable.

I don’t understand why the doctors here are handling my case this way. If I do have lupus, stopping my treatment could lead to serious complications. But if I don’t, then what exactly is wrong with me? I feel lost and helpless.

I would really appreciate any guidance or advice on what to do next. How can I advocate for myself in this situation? What steps should I take to ensure I get the right diagnosis and treatment? But the doctor doubts whether I have lupus or Fibromyalgia???? Please help me in this situation. I'm so tired of thinking about it 😪

[Gigiruth]

Hi AbarnaCan't comment on the medical stuff but I guess I can see they are trying to confirm your correct diagnosis to make sure the meds are correct.

Although you are fearful you may be without for a while, being on the wrong news long term might be damaging.

Hang in there with your own self care and stress management and hopefully you will have answers soon.

So many of us have waiting stress waiting to be seen or find answers.

I have a mix of conditions that give a range of test results. Lots of us have more than 1 condition.

I hope you feel better soon

Gigi

[Abarna in reply to Gigiruth]

Hi Gigi, thank you so much for your kind words and understanding. I agree, it’s important to make sure the diagnosis is accurate so the right treatment can be given. The waiting is definitely stressful, but I’m focusing on self-care and managing stress as best as I can. I appreciate your support and hope things improve for both of us soon!

[desquinn Partner Volunteer FMAUK Trustee]

generally we do not advise the sharing of medical results for the analysis of others. Test results in isolation can be misleading without a patient history. Best to wait to talk to your GP / HCP about them. Also have a conversation about the intent behind the withdrawal of the regime.

[Abarna in reply to desquinn]

Thank you for the advice. I understand that sharing medical results without the full context can be misleading. I will definitely wait to discuss them with my GP and have a conversation about why the treatment was withdrawn. I appreciate your input and will take it into consideration.

[Twin4Life]

It sounds like you are in a tough and confusing situation. I don't entirely know what you should do. But, if I was in your situation, I think I would call the doctor and tell them that your symptoms are getting worse without the medication. I would also ask them to explain why they are unsure about your diagnosis. The more information you can get about your condition the better, because if you end up having to see someone else due to the current doctor not treating you very well, you can give the new doctor the information you already have. (Yes, I know you have medical records, but in my experience, NHS doctors do not look at these very much for some reason.)

[Abarna in reply to Twin4Life]

Thank you for your advice, it’s really helpful. I agree, I should reach out to my doctor and let them know how much worse my symptoms are getting without the medication. I’ll also ask for more clarity about the diagnosis. You’re right, having as much information as possible is important, especially if I need to see a different doctor later on. I appreciate your support!

[Piddlysmam]

I'm so sorry that you are in this situation. The only thing I would say, is to persevere with the doctors. Ask if there are any other tests that might help. If all else fails, you could always ask to see another doctor but it might be worth waiting for a while. See if there is anything else that you can take to ease your pain in the meantime. It's not nice to be in this situation and I do sympathise. I hope you get the help that you need.

Stay strong. Take care of yourself as much as you can. 🤗

[Abarna in reply to Piddlysmam]

Thank you so much for your kind words and understanding. I agree, I need to keep persevering with the doctors and ask about any additional tests. I’ll also try to find ways to ease the pain in the meantime. It’s been tough, but I’m doing my best to stay strong. I really appreciate your support. Take care!

[Dinkie]

It is possible to have both Lupus and fibromyalgia. I have a strong family history of lupus and had the ANA antibody and rash present but still have a diagnosis of fibro only, which to be honest, I am happy with. You are entitled to ask for a second opinion so perhaps research consultants with an interest in lupus and ask to be referred. Good luck.

[Abarna in reply to Dinkie]

Thanks for sharing. I agree, getting the right diagnosis is important. I’m looking into specialists and a second opinion. Appreciate your advice!