Feeling a bit lost and confused...

[Makimon]

Hi everyone, this is my first post here. As the title says I’m feeling a bit confused at the moment, and I’m hoping someone can shed some light on my situation or share their stories too.

I’m 29 and I live in Essex. After quite a few viral infections and long investigations, I was diagnosed with Fibromyalgia in 2013, and in 2015 I was diagnosed with ME. My life has changed a lot over the years and I’ve had to make a lot of changes to the way I live in order to cope with my health issues.

At the end of last year I went to my GP as I wasn’t feeling very good. I’d been feeling on and off like that for at least a year and I just put it down to the Fibro and ME. I’m quite used to those conditions, but I just felt that something was different when I was having these episodes.

My GP ran some blood tests and my ESR and CRP were both highly elevated, but my ana test came back negative (although I don’t know the numbers). I was put on steroids and my ESR/CRP levels went down to a normal range. After I came off the steroids though, my ESR went right back up and has been consistently high all year.

Last May, I saw the Rheumatologist and in his examination letter he had marked me down as having hyper-mobility syndrome as well as my pre-exisitng conditions and said he certainly thinks I have an autoimmune condition, either Lupus or connective tissue disorder. He was very thorough and took down my family history which includes Fibromyalgia and Lupus. He sent me for another ana test and a chest xray but they lost both tests when the NHS computer system got hacked. My blood test was redone but I still don’t have any news. He said that when I saw them again I could maybe start a trial of Hydroxychloroquine.

I’ve got my follow up appointment at the end of October, and I’m feeling worried about it. I saw my GP yesterday as I had another episode of feeling really unwell again and she’s run some blood tests so I’m waiting to hear about my ESR again. She won’t give me any further information and I just feel really stuck. The Rheumatologist I saw last time has left and been replaced by someone new, which also worries me.

I’ve also had very painful feet for the past few years to the point where walking is becoming an issue. I have Plantar Fasciitis in both feet and have done for years. I’ve recently had an operation to lengthen my calf muscle in the hope to relieve some of the pain and tension in my foot, but so far the pain has got worse. I’ve been seeing a physiotherapist who said that if I was to have an autoimmune condition, then that’s what could be causing the pain in my feet. As my walking is becoming affected, I’m desperate for a diagnosis.

I guess my main questions are:

• can you have a negative ana but be diagnosed with Lupus?

• can your ESR be raised when you have Lupus?

• how long did it take you to get a diagnosis?

• any tips to help me get some answers from the rheamatologist?

My symptoms are: redness on my face over both cheekbones and slightly on my forehead and hairline, nausea when I'm having a flare up of unknown condition, headaches and migraines, dizziness, feeling hot all of the time, occasional night sweats, I feel like all of my joints are on fire including my teeth, feeling really itchy in my soft tissues and muscles, extreme fatigue, very bad pain in my feet and legs, very sensitive in my upper torso and upper arms, mobility problems, IBS, Anaemia, chest pain, insomnia and sleep issues and so much more!

Sorry for the long post, I know that no one can tell me if I have Lupus or not, but any advice would really help me!

Thanks,

Sophie

[Hidden]

Hi Sophie. I'm not able to help with your questions much as my fingers are extremely sore just now. But I would say yes a consistently raised ESR shows you have inflammation and makes autoimmunity more likely. It's possible to have Lupus with a negative ANA but much less likely - think it's 5-10% who do perhaps. Whereas other rheumatic diseases would also raise your ESR same way but are more likely to occur with seronegative bloods - such as RA, Sjögren's and Vasculitis - around 30% of sufferers have negative antibodies. I feel really sorry that you've had such trouble getting seen again and extracting information out of GP over this time. There's actually nothing worse than uncertainty. Hope you get answers soon. Please take care. Xx

[Makimon in reply to Hidden]

Hi thank you for your reply, it really means a lot to me. Thanks for sharing that information and I hope your fingers ease up a bit soon! I've gone through a lot from my earlier diagnosis of Fibro and ME, and I thought I was done with waiting around for appointments and tests! I'm hoping I'll get some answers at the end of next month, so I will keep everyone posted. Take care xxx

[Babymilo]

Hi. I dont know all the answers because my ana test is positive. But my doc said that it could happens. Even though your test is negative but if you have the almost all symptomps (I forgot how many) you could possibly positive.

About ESR rate, mine is high too. It makes very clear that im positive because people with lupus usually have high esr rate.

Im sorry I dont have the answers about your questions, but I just shared my own experience. I was very sick for about 8 months before knowing it was lupus. Actually because of my ana test was positive it makes me easier to get the diagnose. I dont know if it helps, but you could try to look for second opinion from doctor. First time i got diagnosed. I went to several doctors because every doctors are different in treating patients and make sure which one you feel very comfortable and better because it will be a longtime relationship. Sometimes we dont only need the prescription and medication, but also the doctor that could listen and understand your problem and want to share all information with you.

[Makimon in reply to Babymilo]

Hi there, thank you so much for your reply. It really helps just hearing other peoples stories and I really appreciate you taking the time to reply to me :o) I am worried as I liked my original Rheumatologist but he was only a locum and had to be sent back to London. So my appointment next month will be with someone new, I hope they are nice and understanding, like you say it's very important! Thanks again and take care xxx

[maggielee]

Sorry to hear your so poorly. I too have a positive ana, but mine is SCLE and had a classic rash for those were aware of it, so many doctors didn't.

I wanted to say that I had planter fasciitis first in one foot then the other really affected my walking. I had physio privately to try and improve it and also had custom made insoles & wore trainer/walking shoes. Insoles retrained my feet and have not had it reoccur, pretty shoes are out, lots of supportive shoes 😕 but feet are happier for it.

Also took a specialist in Lupus to recognise other autoimmune symptoms is sjorgrens & Raynaud's... ML ☺

[Makimon in reply to maggielee]

Thank you for your reply, I really appreciate it. It's interesting that you have suffered with PF before too. I've exhausted all treatment options now, I was offered the calf surgery to help lengthen my very tight muscles as I had gotten to the end of the road with treatments. It helped initially but now the pain has come back quite severely. I still have PF very badly in my right foot. It's annoying not to be able to wear nice shoes isn't it! Thanks again and I will keep you updated xxx

[misty14]

Hi makimon

Sorry to read of your poor health and diagnosis difficulties!. Sadly yours is a very familiar story which might help you feel better. Lots of people on here get diagnosed with ME to start and then when symptoms change this can be revised to lupus or another immune illness!. This could well happen for you as you have persistent inflammation that responded to steroids!. Your ANA could well show up this time as mine had been negative and then suddenly changed to positive and it made all the difference to my care. It's good that your doctors keep testing it. They expect it to change too I should think!.

It's hard going to see a Rheumy but specially so when new to you and I so understand you feeling worried!. It's a shame the other one left!. I reckon this one will ask how you got on with the steroids and what difference they made to symptoms!. This is important as if they helped it proves you've got an inflammatory illness.

It shouldn't take long for your latest bloods to come back so good luck for results and for Rheumy visit end Oct. I'm sure it will go well. Keep us posted and I hope I've helped a little. X

[Makimon in reply to misty14]

Hiya, thanks for your reply. It's so good to read other peoples experiences and it has made me feel a bit better. I am wondering whether in some cases Fibro/ME could be a pre-cursor to autoimmune diseases. So it's very interesting to hear that's what happened to you! It's also good to know that your ANA suddenly became positive, I didn't know that could happen.

I'm taking my mum with me for support, and also she's going through the same thing at the moment so we're both being seen by a Rheamy! The last one I saw was the same one she had seen too, so he took a keen interest in us both as I think a lot of our symptoms are similar and it was like he was putting together the pieces of the puzzle. Like you say it's such a shame he left! Hopefully this new one will be just as good. I'm really hoping they ask a lot of questions and have some ideas of what is going on. I will certainly mention the steroids helping me!

I will definitely keep you posted! Thanks so much again! xxx

[misty14 in reply to Makimon]

Hi makimon

Good luck with the steroids, hope they help again. It's all good info for the consultant!. He'll also be interested in your mum's medical history so good she's going with you!. Is she proving difficult to diagnose too?. Genetics do play a part in these illnesses and there's still a big debate about causes of ME but because symptoms are similAr that people without the right markers can be diagnosed with this first. Fibro can come with these immune illnesses but the widespread pain doesn't respond to steroids as its not inflammatory. This is why consultant will be interested in outcome of steroids specially as your getting a high ESR consistently!.

Good luck to you both for the 20 th. Hope you get good outcome. Fingers crossed and glad I've helped. X

[Makimon in reply to misty14]

Hiya, sorry I just realised I'm talking to you on the post below too! Doh!

My mum has started displaying signs of Fibro, it started a year and a half ago and she's had problems with her elbows for quite a while. She's in a denial stage at the moment which is quite normal when you don't want to believe that you're unwell! My Grandma (her mum), displayed a lot of strange symptoms too and it was put down to RA. But my mum remembers her being in and out of hospital when she was little for these problems but back then I think they had different names for the illnesses that are around today! Our whole family is Hypermobile, and I think I mentioned before that her cousin has Fibro, and her cousins daughter has Fibro and Lupus. My cousin also on my mums side, is also displaying some interesting signs which could point to some of the issues that run in our family.

We both live in Essex and there's been a huge shortage of Rheumatologists at both hospitals near us. I'm being seen in one and she's being seen in the other one! They only had one Locum Rheumy who was travelling between the hospitals and that's how we both saw the same one. He was brilliant, and was really interested in my history and also my mum and our family history. Because of the shortage we both have only been seen once this year. My my mum saw that Rheumy in April and I saw him in May. The only way I've managed to get another appointment (the one next month) is to let my GP write a letter to them as my ESR issues are ongoing. Unfortunately my mums not been so lucky and still hasn't heard anything about her follow up which makes me feel so sad as she's really struggling.

I'm hoping that my high ESR all year and the steroid treatment will give the new Rheumy some indication of what is going on. I do feel better after taking the steroids and my ESR does come down on them. As you said Fibro is non inflammatory so I don't think it could be that either.

Thanks for all of your info, it's been so helpful!

Only 22 days to go!

Take care, Sophie xxx

[misty14 in reply to Makimon]

Hi Sophie

What a strong family history you have!. The consultant will be very interested in this. I'm sorry your mum is struggling and no sign of her follow up appt!. It's so hard waiting!. She could ring the consultants secretary and say she's due an appt but if she's in denial I don't suppose she will want to!. Hard on you watching her!. I was born in Essex. South wood ham. It's awful there's little Rheumy provision there!. I look forward to hearing how you get on. Glad the steroids do help, shows you have an inflammatory illness!. Good luck and glad I've helped. X

[Paul_Howard Partner LUPUS UK]

Hi Makimon,

Welcome to the LUPUS UK community forum.

I'm sorry to hear that you have been so unwell, and I hope that your rheumatology appointment next month goes well and you get some answers.

To answer some of your questions;

1) ANA is positive in around 95-98% of people with SLE. This means that there are a small number of people who are diagnosed who have a negative ANA, but this is likely to depend on the views of the consultant you see and what your other test results are. Negative ANA could possibly suggest some form of undifferentiated connective tissue disease (UCTD) which is usually treated and monitored the same.

2) As an inflammatory condition, it is common for people with lupus to have a raised ESR. One thing of note is that usually in cases of lupus, the ESR will be raised but the CRP will be normal.

3) If you'd like some tips on preparing for your rheumatology appointment to get the best out of it, I recommend that you take a look at our blog article here - lupusuk.org.uk/getting-the-...

If you would 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...

[Makimon in reply to Paul_Howard]

Hi Paul,

Thank you so much for answering my questions, I really appreciate it.

As someone mentioned before, is it fairly common to have a negative ANA then for it to be positive the next time you're tested? I have had one negative ANA by my GP, but I have not had any results from my other ANA that my Rheumatologist ordered.

On the original letter from the Rheamatologist I saw back in May, he did mention I could have Lupus or a connective tissue disease. And I wasn't sure what that was, so thank you for explaining. Is UCTD similar to Lupus?

I will certainly look at those links you provided, thanks again for your help.

Sophie

[Paul_Howard Partner LUPUS UK in reply to Makimon]

Hi Makimon ,

I have certainly heard of reports of ANA test results fluctuating but I am afraid I have no reliable figures for how common this may be.

UCTD can be similar to lupus and is often called a 'lupus-like' condition. It can present with some of the same symptoms but generally does not meet enough diagnostic criteria to confirm a diagnosis for one of the connective tissue diseases like lupus, rheumatoid arthritis or scleroderma.

[misty14 in reply to Paul_Howard]

Hi Paul

As someone who is diagnosed with UCTD I just need to let you know that you still need a positive ANA to be given this diagnosis!. It means you could have one of about four immune illnesses , body can't make up its mind which to be and needs monitoring over time. There is sero negative lupus that I guess doesn't need a positive ANA but a very open minded consultant!.

Best wishes for a good weekend.

[Makimon in reply to misty14]

Hi Misty,

Is UCTD the same as MCTD? I'm getting confused with all the different terms now, sorry!

Thanks,

Sophie

[misty14 in reply to Makimon]

Hi makimon

It's all very confusing. MCTD is different to UCTD in that a particular antibody has to be present in the blood to be diagnosed!. Anti RNP antibody. According to Triona Holden's ' talking about lupus ' book MCTD is a less serious illness than SLE but like UCTD needs to be monitored for possible changes over time. That's a good book , I can recommend it. Hope that's helped, ask anything else if you need to. X

[Makimon in reply to misty14]

Thanks so much for your help, there seems to be so many different illnesses it's just so confusing!

I think my main worry now is that my 3rd ANA will be negative too. The first one my GP did early this year and didn't do the dsDNA I don't think. The second one my original Rheumy did in May (ANA + dsDNA), and they both got lost when the NHS computers got hacked! And the third lot I can't remember if they did dsDNA again and I don't have the results for those. I'm scared that they are not going to help me if it's not showing up in my bloodwork. I would just like a rough idea of what is happening so I know what I'm dealing with, and I'd also like to try Hydroxychloroquine to see if it helps at all. I'm getting married next year and I just want to feel a little better for my big day.

I can tell when one of my flares is starting, I just feel so ill I don't know what to do with myself. Each time I go back to my GP and she practically rolls her eyes at me and begrudgingly sends me for a blood test to check my ESR and it's always high. Then she will prescribe a 30 day course of Prednisolone and my ESR will come back down, then go back up once I've stopped taking them. And then the whole process happens again!

Sorry for the whinge, I feel like I'm driving myself crazy!

Thanks for all of your help :o)

Sophie xxx

[Makimon]

Hiya, I just wanted to quickly update you all. I had my blood test on Monday and was called by my GP, my inflammation (ESR) is very high, and higher than a couple of weeks ago so she has prescribed me Prednisolone again! I'm on it for 30 days and they are going to monitor me and check my ESR again in two weeks time. This is exactly the same thing that's happened repeatedly this year, so I'm expecting it to go back down whilst I'm taking the steroids and then eventually come back up once I've stopped them. Not looking forward to the steroid induced insomnia and an appetite of an elephant! All my other levels are fine and my CRP is normal! Not long to go until my second Rheumy app on the 20th October!

I will keep you all posted! xxx

[Hidden in reply to Makimon]

Hi Sophie - just wanted to add to previous comment that my ANA was negative while on Prednisone and didn't become clear positive until last year - despite a consistently high ESR and other markers such as IgG and IgA. I say this because I know you are seeing the rheum soon so thought I should warn you about the Prednisolone. I had to be about 4 months clear before my results came back rude positive for ANA and IgG.

My Rheumatoid Factor was positive in 2011-12 but went negative after 2 years on RA drugs and steroids. Unfortunately they failed to check my ANA ever until I had been on Methotrexate with Hydroxichloraquine for a year - when it was only equivocal. So I guess I'll never know but suspect that it would have been high positive before all the disease modifying drugs and steroids came into my life.