Help

[Lljb]

I'm hoping someone can help I'm 30 and suffer widespread pain in every single part of my body the doctor has said I have fibromyalgia but no medication seems to be working and I've had positive dsdna test and positive Ana test, my blood tests are always up and down lack of vit d and calcium please can someone help

[Makimon]

Hi, wanted to say hello and I know how you feel 😘 I’m 29 and feel the same as you do. I just wanted to reach out as I’ve been in the same place as you and know how frustrating it is. I’ve been diagnosed with fibromyalgia for nearly 5 years now, and last year things started to change for me and my symptoms started to point to something more autoimmune. I’ve had so many blood tests this year and even though my ESR is high I’ve not had a positive ANA or dsdna yet. So it’s a good first step that you have had some positive blood tests. The last rheumy I saw suggested that I could have Lupus, but at this stage they’re not sure! It’s horrible to be in a space where you know something strange is going on but you have trouble getting any answers. Also doctors are sometimes keen to place all symptoms being down to Fibromyalgia. What medication have you tried so far? If I’m honest, I’ve tried so many for pain and absolutely nothing has worked yet. Sometimes hot magnesium salt baths can ease things slightly and a bit of codeine too! It’s interesting you mention the low vitamin D as I think that’s really common for people suffering chronic illnesses. That can also cause a lot of pain, have you been put on vitamin d tablets? Are you due to see a rheumatologist any time soon, as they have a good knowledge of autoimmune conditions? Sorry for all the questions, the people on here are lovely and you’re not alone in this! Xxx

[Lljb in reply to Makimon]

Hiya love thanks for the reply, I've been on tramadol and ibuprofen for about 8 years then they changed me to morphine patches and naproxen but my stomach has gone really bad now and I can't have any anti inflammatory pain killers anymore and to be honest that's when my pain has got really bad. I've been taking vit d and iron tablets and been told have loads of calcium intake as that's low they also give me amitriptyline as well 60mg a night just seems nothing works. As well as all that my eye sight is getting worse and I've gone def in one ear it's awful the rheumatologist has also sent me for medical counselling just fell so useless for my 3 children xx

[Makimon in reply to Lljb]

I’m so sorry to hear that Hun, sounds like you’ve really been suffering all these years. I’m exactly the same with anti inflammatory meds like ibuprofen and naproxen, they really upset my stomach and can cause gastritis too. I’ve been on Tramadol and Pregabalin for Fibro and I found that although they worked initially that after a while their effectiveness wore off. And I’ve not found anything else to work with the pain. Over the years I’ve reduced the meds I’m on as I didn’t think they were helping but everyone is different. I would take each day as it comes and see if you can see the rheumatologist again sometime soon. With having positive ANA and dsdna tests they need to investigate that further, but it can take a long time to get any solid answers. I have had short courses of steroids this year due to my high ESR rate, has yours been high too do you know? They did really help with my pain but the side effects aren’t very desirable! I’ve also started on a drug called Hydroxychloroquine which can be used to treat Lupus and rheumatoid arthritis but it takes quite a while to work. Keep up the good work with the vitamins too, its important not to let those drop too low again. Xxx

[Lljb in reply to Makimon]

I keep stopping medication as i dont feel it does anything but cause either problems and I haven't heard of that esr what's that love I'm on my way seeing the rheumatologist now to see what my recent mri come back as. Do you find your always I'll with chest infections as well as I'm always unwell I've had plurisy for about 5 week now and I hope you find answers as well love it's so awful I wouldn't wish this on my worse emermy xxx

[Makimon in reply to Lljb]

I think it’s good to wean off things slowly to see if it helps at all. But if it causes other problems that’s not good! ESR shows up in your blood and it’s an indicator of inflammation in your body. Every time I felt very unwell and in a lot of pain I found that my ESR was high. Once I had taken some steroids my doctor gave me I did feel better but it’s a repeating process so there’s lots of ups and downs. I do find I get lots of reoccurring infections and have had lots of chest infections and pleurisy in the past. Good luck for your appointment and please let me know how it goes! Xxx

[Paul_Howard Partner LUPUS UK]

Hi Lljb ,

Was your fibromyalgia diagnosed by a GP or a rheumatologist?

If you are unsatisfied with your current diagnosis and treatment plan, it may be worth asking your GP to refer you to another rheumatologist for a second opinion.

If you'd like more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

We also have a blog article about managing pain which you may find helpful - lupusuk.org.uk/pain-managem...

[Melba1]

Hi,

Please know that you are not alone with this. A lot of us are mums on here and the guilt is part of being a mum and having a difficult disease to cope with but you're not useless you just need some proper help and the best place to start is to get the right diagnosis and some treatment.

Have a look at the ACR diagnostic criteria for lupus - you need 4 for a diagnosis and it sounds from your +ve dsDNA, ANA, pleurisy and pain (is it joint pain?) very indicative of lupus. The other criteria some specialists use is the newer SLICC criteria. You may have fibromyalgia too but it may be worth asking your rheumatologist if fibromyalgia causes a raised ANA, +ve dsDNA and pleurisy (it doesn't!).

I am not a doctor but fairly sure that +dsDNA is quite specific for lupus and with your symptoms and other results would have thought you should have been started on hydroxychloroquine at the very least. Has your rheumatologist done that?

As Paul says, if you don't think your rheumatologist has made the right diagnosis you can ask for another opinion. I think most rheumys would start treatment based on your results and whilst sending you for counselling may be useful too, you almost certainly only feel so rubbish because you are physically ill and that needs treating too. Lots of us on here are dsDNA -Ve and some people have several years undiagnosed before bloods catch up with symptoms (or some never do) but for you with a +dsDNA, that shouldn't be dismissed.

Hope you appointment went well and you got some answers and start to feel much better soon.

xx

[llewelyn2405]

Hi there, just wanted to say that I was wrongly diagnosed with Fibro and like you was in a lot of pain. I had a positive ANA and loads of other symptoms of lupus. I put up with it for 5 years until I actually met a Lupus expert rheumy who diagnosed me straight away with SLE. After being on the right meds, I am now feeling so much better. I am not saying you have been wrongly diagnosed but its always worth asking for another opinion, you never know. Keep smiling

[Lljb]

Thank you so much for all your lovely comments they want me to do blood test every 2 week for 3 month then go feom their he said he will see me again in 3 months time still not on proper meds just morphine amitriptyline paracetamol and yea my pain is head to toe is awful some days it feels like I've been beaten up and someone sucks all me energy out off me xx