Help and advice please

Recently diagnosed (at last!)

Hi all haven't been on here In a while... I've suffered with lupus for nearly 10 years but the past 2 years they have been telling me I shouldn't be in pain because it isn't active so I asked them.. Persistently for 2 years to test for fibromyalgia... Finally last week they said I do have it but didn't inform me of this 😡 now on painkillers and anti depressants but today I'm literally sore everywhere and I've noticed I've came out in hard sore itchy lumps on my knees elbow and bum cheeks 😕 I'm just a little worried as I don't know if this is a symptom? Please help I'm really struggling to figure out what is my lupus and what is my fibromyalgia doing to me as they both have a lot of similarities any advice would be greatly appreciated x

7 Replies

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  • Hi. I'm sorry you are in a lot of pain and are feeling so low. I'm in a similar boat - I have Lupus, which is currently classed as 'mild' and not organ-threatening, but I get bouts (lasting from days to weeks) of severe pain and very low mood. It was finally suggested (by both my rheumatologist and GP) that I might have fibromyalgia. For me, it's about managing the symptoms - using lifestyle, drugs (which are non NSAID), etc. In your own case, are you under the care of a rheumatologist? If so, they should be competent to determine if this is Lupus and requires tests, a change in meds, or fibro. If you haven't been seen by a specialist recently, then perhaps you want to push for a referral? Out of interest, do you have any other fibro-type symptoms e.g. difficulties with sleep, IBS, increased sensitivity to noise? (although the potential list is of course very long)

  • Hi thanks for the reply I am under a rheumatologist but I get passed from one to another so it's hard for me to explain and for them to understand.. I saw them last week and they gave me medication for it but so far I'm not seeing any difference, it's definitely not my lupus as bloods have confirmed this.. I get a lot of headaches. Sensitive skin can't sleep but always tired the list is endless x

  • It's particularly difficult if you don't get to see the same rheumy. Which med did you get given? I have found Lyrica/Pregabalin to be the only thing that makes a difference when I have one of my 'episodes', which is what makes me think that, in my case, it is fibromyalgia. From what I've read, Lyrica seems to be effective for fibro. However I find it very hard to tolerate and can only take a very small dose - but anything is better than nothing. Lyrica also helps with anxiety/mood I find. And it makes me feel very drowsy, so also helps with the sleep onset difficulties I get.

  • Hello.

    Sorry to hear that you are experiencing these symptoms, which are not normally part of your lupus. When your doctors are telling you that your lupus isn't active, is that as a result of your blood tests? You know how you feel. If you think something has changed over the last 2 years they should be listening. I think even mild lupus can have a massive effect on your life and your body. If only the doctors could spend a day in our shoes eh? Are you on medication?

    I would say, have you got a nice, understanding GP who is your side? Can you book an appointment, so you get more than the usual allocated 10 mins, to discuss with your GP the problems you are having? They might help things along. Are you already seeing a Rheumy and a Dermy for your Lupus? Lastly, do you have the contact number/email for a Rheumy or Lupus Nurse? They might be able to help too.

    My advice would be to take photographs of these skin problems and get them printed off. I also keep a daily health diary, just in a blank notebook, a page per day, and write down how I've been feeling and the pain relief I've taken for headaches etc. I have felt in the past that my Rheumy hasn't believed me when I've told her how bad things are - my diagnosis was SCLE and mild - moderate I think recorded somewhere at some point. So I started my diary and take it to all appointments. It helps my memory too, when they ask how I've been. I take my photos to every appointment too - they can't argue with a photo can they? Sod's Law the rashes disappear by the time you see a Rheumy or a Dermy.

    I know that Lupus and Fibro are very similar and it can be difficult to distinguish between them. But from my understanding the tests and the treatment are very different. (I have Lupus and my sister has Fibro).

    I wish you good luck with this anyway.

    Wendy

    (By the way, I was told at some point that Lupus rashes aren't itchy. For me this isn't always correct. Some of my skin rashes have been itchy and others haven't been. The ones that are itchy can drive you nuts.)

  • Hi thanks for the reply yes I'm under a rheumatologist but always get passed from one to another so it's hard to explain everything, it's now gone from a rash to big lumps all over my body.. Managed to get a doctors appointment later on but I'm really struggling with pain too today all my joints are extremely sore (more than usual) hopefully they'll be able to help me.. I'm definitely going to start writing things down as my memory seems to be getting worse.. Thankyou I'll post an update later x

  • Yes, let us know how you get on with your GP.

  • Psoriasis can cause some types of skin problems. Actually there are at least five different types of presentations. Psoriatic arthritis is VERY painful in the joints. I know about this because my sweet daughter suffers from PsA. I understand that we can have more than one AI at a time.

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