Hi, this is my first time back on the forum after a few years break just bimbling along whilst struggling as we all do. But I've really hit a wall. I've also posted this on the Fibromyalgia/Rheumatoid Arthritis communities.I don't want to write too long a post so will try and keep the background brief.
Basically I was diagnosed with Fibromyalgia by my GP back in 2010 following a few years of firstly indescipt symptoms and then being hit by intense back pain (discs were suggested) over a few months the pain spread out to affecting all my limbs and after reviewing all my history (Raynaud's, migraine, childhood trauma, depression, IBS .......etc) I was told Fibromyalgia. I was so bad I had to give up my nursing career. GP also did an annual blood test for Lupus until he retired as he strongly believed it was a possibility in my case, but it's been refused since.
For the first few years, other than the grieving for the old me, I mostly coped especially with the support of my husband and kids. But I knew I was getting progressively worse.
A gastric issue got me eventually referred to a pain doctor although they didn't do much by way of assessment, and I did see a rheumatologist once who did trochanteric butsa injections for me, but seemed happy with my fibro diagnosis.
Some private blood tests threw up the probability of thyroid issues, but the GP ones didn't agree. A head MRI showed I have Empty Sella Syndrome and I was sent to Endocrinology but again no real input there.
Again I tried to just keep going whilst getting worse. Odd trips to GP with new symptoms which resulted in physio referrals but the physio would only treat the specific areas referred for and worsened other areas instead 🙄
I have cervical spondylosis in my neck (diagnosed 2012ish) and following a GP visit last November requesting further bursa injections I was sent for a lumbar CT which has now shown lumbar spondylosis with arthritic changes and mild disc bulges.
I asked for an MSK referral hoping I could have a corticosteroid injection to relieve that intense pain and allow me to try and get back to pottering, currently I'm stuck with my heat pad on constantly to try and get me through the day and occasionally having to take my Longtec (mst) which in reality is my go-to medication on days I need to actually do something important and I really dislike taking it on stay-home days.
The consultant at MSK was lovely and could clearly see how much pain I was in so didn't even do a physical assessment but told me he wasn't able to give a corticosteroid injection due to the new NICE guidance. Instead he referred me back to the pain team.
They say they are also tied to the same guidelines and won't do anything injection for me, not alter my medication review.
In addition to all the above (which is longer than I'd intended) over the last few years I've been experiencing intermittent elbow pain which includes the elbows swelling, going red and being hotter than elsewhere,with the same issue to my right knee. Over the last 18 months my fatigue levels have also increased dramatically and my recovery time from any activity has doubled or even trebled. I also get a lot of pain in my hands - tendons etc especially if I try to do anything craft related the next days are horrendous.
In my last phone consultation with the pain team, they have agreed to write back to the GP to request a full, back to basics reassessment with bloods (hopefully) to explore the possibility of an inflammatory condition (lupus, rheumatoid arthritis or other) being added to the mix. I don't have much knowledge of family history but I know my mother was diagnosed with juvenile arthritis and struggled throughout her life with flare-ups, and I have issues with,y eyes that my old GP thought was probably Sjogrens.
So in a nutshell (!) and hoping that the GP agrees to start afresh, has anyone any advice on notes I should take with me when I can get in, questions I should ask, and tests I should definitely hope are included in any blood tests?
Thanks for reading if you got this far!
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Wispymisty
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Welcome back to the forum, though sorry it's because you've been dealing with a lot of difficult symptoms. Unfortunately, you're not alone in it taking a long time to get a diagnosis of these kinds of conditions. Ahead of your appointment, you may find these blog posts helpful:
- This one is on the process of diagnosis, and includes some of the tests for lupus and the kinds of symptoms they look for. Basically, there isn't one test that can say for sure if you have lupus or not - a good rheumatologist should be looking at the combination of your test results, symptoms, and medical history to come to a diagnosis. lupusuk.org.uk/getting-diag...
- This one is on getting the most from your medical appointments, including some tips from other people with lupus on how to prepare for appointments. lupusuk.org.uk/getting-the-...
I hope these are helpful to you, but please feel free to contact me any time if you have any questions on Debbie@lupusuk.org.uk
I phoned local immunology department who handles GP blood tests.They advised me to ask GP to do the AntiNuclear Antibody (ANA) test requesting follow on ENA tests and anti-ds DNA at the same time.
Immunology clinical lead I spoke to said that I might need to change my GP to get it, but that it was my right.
GP though did the testing straight away, and ANA strong and positive. They only gave partial ENA screen results, along with anti-ds DNA, all negative.
(Did your earlier GP do these tests? Can you get access to the results?)
Sadly, my follow on NHS rheumy referral was hopeless, I think because I did not match the 2019 EULAR/ACR SLE Classification criteria intended for research only. As I walked in the room they said I had not systemic autoimmune disease, so this must have been based on bloods, not on symptoms as appointment had not started. Handy way of controlling caseloads and minimising minutes appointments take.
I felt dreadful and did not understand why so much was going wrong, different things every day. Waking up in the night so much hurting, lots of sweats and felt like I had flu. Could not last the day at work. Unable to go into town during lunch break, as knees swollen and could not walk. Also, by this time, photosensitivity dry eyes and other symptoms.
I asked for advice from the London Lupus Centre, who listed possible doctors who covered my symptoms and which NHS hospital they were associated with.
Some go private for diagnosis and then decide whether to transfer over.
The diagnosis changed things around for me.
Your symptoms seem different so another route may be best. Providing this in case it helps
I think I'll probably end up going private myself, although it irks me! Regarding bloods, I have had the ana done in the past although it was negative so was not pursued.
Good advice to find out the best bloods to have done. I think I'm going to get advice as to the best consultant to see locally and then check what blood tests they want doing.
We had a very good talk from Professor Bruce at North West Lupus group I also have diagnosis of UDCTD with some Lupus symptoms he was basically saying, I think, that we all start off with UDCTD which is where symptoms overlap from numerous auto immune disorders, until our system decides which way it is going so to speak so it depends and why it is called undifferentiated and may gradually develop more clearly into 1 or more specific condition, My consultant Rheumatologist is very supportive and told me that as its such a mouth full I can just say I have Lupus as its the nearest and i am on Hydroxy and prednisolone
You might want to ask if an ultrasound of your joints could shed some light. Also, an optometrist could diagnose the Sjögren’s syndrome. That could be helpful information plus they could provide treatment.
Thank you - I hadn't considered u/s of joints I'm not sure whether it's something I could get done though. I feel I should definitely look further into a Sjogrens diagnosis
Some private blood tests threw up the probability of thyroid issues, but the GP ones didn't agree. A head MRI showed I have Empty Sella Syndrome and I was sent to Endocrinology but again no real input there.
That’s really interesting! Did the Endocrinologist explain what Empty Sella Syndrome is? Basically it’s an issue with your Pituitary gland and the fact that you had blood tests that showed up thyroid issue would confirm that.
Whilst not dismissing that you may well have an autoimmune issue going on with a Sjogrens or MCTD mix, it’s very likely given what you say that the thyroid is also mixed in. Plus the fact that it’s well known that autoimmune thyroid, Sjogrens and lupus are known as the big three because they often run together.
I’d be the first to say ask for a referral to an Endocrinologist again but I think you might do better to get yourself clued up on the thyroid first as GPs will only test TSH, which is useless. You need a full thyroid panel of FT4, FT3, TSH and both thyroid antibodies (TPO and TgAb). The only way to get those done is via a private medical Endo or doing your own Thyroid blood tests via some where like Medichecks or one of the other companies.
Additionally I’d also advice, as your thyroid has been flagged, to get your Vit D, B12, Folate and Ferritin checked too as again it’s very common for them to be deficient if thyroid hormones are too. All of those things will give you a misdiagnosis of Fibro if not all checked properly and make you have a lot of the problems you have. If you go over to the Thyroid UK community on HU you can get all the help and info on blood tests and discounts offered by them.
Once you have that information you will be able to tell if your Pituitary is behind some or all of your problems or if it’s a combination of all the above issues but at least you can start on the journey of correcting it and know who is the best people to see.
Thanks Star13 The endocrinologist I saw was convinced that despite not being able to see my pituitary it must be functioning fine and she did do a short sinacthin (?sp) test which was negative. I have borderline Vit D deficiency, low B12 and issues with my folate too; these were only discovered when a gastroenterologist (who was disgusting with the lack of investigation done) wrote to my GP insisting they were tested and then he insisted I was supplemented. I wish he was still around!
I've actually been invited for an NHS health check which will include some bloods, I'm planning on waiting until they have the pain clinic letter in front of them before I book it, and asking for a whole array to be added then, but I know they might resist that request.
Depending how approachable they are this time, I was speaking to my husband last night and we might try and find a specialist who does both private and NHS work then pay to see him. I appreciate I'll probably end up paying for private bloods too though.
Its a Rheumatologist you need to do the blood tests. They can do a dsdna test for inflammation which a GP I understand can't do. I am negative on all bloods except Dsdna and without this I would not be diagnosed with Lupus. Hence if I relied on just my GP I would not have been diagnosed and be left in the Fibro box which is convenient but not always the whole answer. You tube has a few talks from Dr Elizabeth Price re. Sjogrens Syndrome. She explains symptoms, diagnosis etc. I have Lupus/Sjogrens/Joint Hypermobility Syndrome. birdbath.org.uk has podcasts from experts at Bath Centre for Rheumatic Diseases. Keep a list of symptoms as without this, if you get negative bloods, you may not get diagnosed. I was diagnosed with Sjogrens on symptoms alone. I understand that things may have changed and a lip biopsy would be needed now along with symptoms. Sjogrens and hypermobility are connective tissue disorders and can cause pain and inflammation throughout the body and flare up at any point anywhere. Although Sjogrens has the added fun of sucking all the moisture out of everywhere too. There are common symptoms we all have but we then have many different ones and many different reactions to things. Fatigue is a big one most have (I have it every day) Listen to your body, don't overdo things and rest when you need to. Say no if you just can't do something that day. If you overpush you often feel the pain the next day. Build things up gradually and know when to stop. A diagnosis is key as you then get medication and regular follow ups. Fibro gives you next to nothing and no follow up generally. If you think something is wrong keep seeking an answer. Took me over 10 years to find the right specialist who did the right tests and asked the right questions. Keep doing your research it was partly how I finally got to see the right person who spotted the symptoms. I do hope you get somewhere but a good GP will support you whatever you have although they are few and far between.
Thank you for your replyThat's really useful, I'd not come across the dsdna mentioned before. I have had ana tests in the past but it was inconclusive each time so when that GP retired the new ones never pursued lupus again.
I've just restarted with a symptom checker - so I can go armed with as much info as possible . It's all so exhausting though isn't it 😔
Thanks again and I'll follow those links you've given and have a listen
It is so exhausting but worth it in the end even if you draw a blank you can try again when more symptoms appear. It's crucial to find a Rheumatologist that specialises in autoimmune conditions as many don't and really don't have the expertise needed to diagnose you. I went private the first time to a Sjogrens specialist and it was worth the money. If your eyes are running or in pain I would get them seen to soon and get drops if needed and advice as I didn't realise and not one optician picked it up even though I told them I had runny eyes, blurry vision and a dry mouth. I got a cyst on my eyeball as my eyes were so dry and inflamed, it wasn't pleasant but it got me the Sjogrens diagnosis.
It's a common fact we have to do our own research and find specialists ourselves and it's hard I know as we are tired and in pain too. You have to get used to being your own advocate and fighting for answers. Dsdna (double stranded DNA) is a great blood test it shows inflammation is present in your body and got me the Lupus diagnosis after I got the sjogrens diagnosis. Only downside is it may go up and down as your inflammation changes but along with symptoms, if you feel you may have lupus, it helps a lot. You really need to find an expert who looks at symptoms and not just dismisses you because your bloods don't come up positive. I know some Rheumys won't even entertain you if your bloods are negative even if you have a great list of symptoms.
Research consultants and ask for recommendations in your area. I'm a great believer in ruling things out. I saw an endocrinologist, neurologist and dermatologist along the way and ruled a lot out but none of them spotted autoimmune as the bloods they did were negative. Don't think every consultant knows what they are talking about. I think of them like builders, there are some you would never let do any work on your house and others who do a brilliant job, highly skilled and you would use them every time.
Only this year have I been diagnosed with joint hypermobility, by chance, by a physio, I'm 53 and had it all my life but never realised and it was never spotted. I wish you all the luck and let us know how you go.
You have probably reached the point that I did. I was 51 before I got my Lupus/Sjogrens diagnosis and I was told by my rheumy that menopause often puts a rocket under any symptoms and lights them up like beacons. (Sorry that's if you are a woman).
I was diagnosed after menopause when my symptoms became more intrusive and I sought medical opinion but actually GP and referrals all happened relatively quickly after that. Looking back however I realise I had symptoms around puberty that were never really investigated, Raynauds, Migraines urticaria and sun sensitivity. I was lucky they became much reduced until menopause although I have always being wobbly and loose limed as well!
I used to do that at the beginning but ended up getting frustrated when no one seemed interested. That said, I'm starting again now so I have some info to share
I am in your shoes and have had all support and advice on here which has been profound in keeping me going. The one bit of advice ive been unable to follow is going private but now I am ready and really think there is no other option. I am somewhat better since a high dose steroid trial but things soon returned and the flaring pattern but somewhat less to the state I was in which I feel was prolonged due to no help or treatment from anyone. fibro does not fit even with symptoms of, I am a shell of who I was since this journey and to hear you will start again for answers is great. Given the times of healthcare we are in its a battle that just exhausts you when already unwell, I too will be starting my journey again as I know a knowledgeable specialist somewhere will have the answers I need as ive experimented with everything possible self help wise and it makes no difference so I know I cannot do this alone and need specialist help which is unavailable locally as only bloods tested, not seen clinically by anyone with any knowledge. my only problem is I have only personal history and evidence of suffering as gave up on gp so need to find someone with interest to look at how I have been affected past years and thats time consuming and yet all important. I am unwell so find it hard to battle on but I know I have to and feeling a bit better at present helps me find some strength to pursue. I think you sound as if in the same boat, im fed up with rashes ,bumps fatigue, weakness, joint, muscle problems ,hands, feet ,neck ,hands ,shoulder, elbow ,leg ,arm ,back, head, feet ,ankle ,chest ,heart ,eye, abdominal ,gland ,nasal ,eye ,skin, face ,thigh problems, in fact over past years I cant think of one problem that has not arisen and inflammation with such a play on it all ,sometimes much at once and sometimes flares of certain things. I wish you good luck, best wishes and good on you for being your own advocate and pushing forward for answers in a disinterested health service. I think its sad that private consults are really for those that can afford them and I feel id have had help was I in a position for that and I think health care should be available to all and a good standard but if you can afford it seems its the only way to find the knowledge needed. Boxed because of lack of knowledge is harmful and dangerous I can vouch for that. The frustration is borne of ignorance so fight you must 🙏🤗
Thanks for your reply, you do sound to be in similar circumstances, and it is frustrating isn't it.I am very lucky to have a husband who genuinely cares and supports me otherwise I know I would have given in long ago. With his help I'm definitely pushing on.
That's great and you are a lucky lady, that must make all the difference, im envious 🙏 and wish you all the best in going forward and 👍you have a good one there 🙏 which is great to hear🤗
we are the same and many same symptoms even I did the private bloods and thyroid did not match gp test my tsh very high and gp gave me folic. My mum also had rheumatoid and my daughter has many problems of suspected juvenile arthritis but ruled out on bloods and had previously glandular fever and suffers much. I have also gotten much worse and fibro does not fit . I also was told in beginning I showed inflammation in bloods. High dose steroids helped alleviate some when very bad but still no answers. I don’t know where we go from here but I totally relate and empathise and with nhs as stands I don’t know how we get the help needed but you seem as I, we know our bodies, know what’s fitting and have both progressed I am certain inflammation is a big part and leads to my systemic symptoms . I’m 7 years in and the journey is getting no easier and referrals you just can’t get. I wish you luck and all best wishes and keep us posted with any help you receive. 🤗
It's quite frustrating isn't it 😕 I had my bloods done on Friday so will be checking in on my results later in the week - hoping they show something that will help my push for Rheumatology referral.I now know that in addition to my mum, her sister also has rheumatism and they're mother had some sort of rheumatology condition prior to her multiple myeloma diagnosis. My daughter is also displaying similar symptoms to myself.
I'll keep pushing and will update with any progress 🙂
yes please update and feel free to pm anytime. my symptoms have been many over past years and many persist. I fear dermamyositis fitting although many of the autoimmune fit except bloods but even if mctd it may answer the mix but I just know fibro does not fit, I wish it did to be honest.. even with them adding to criteria and much seeming similar it does not fit.you must worry for daughter as I do. yes keep pushing and I will be thinking of you 🤗
I've had some results back - decided to check after my last reply and I've put up a new post with them in - sadly as expected a negative ANAhealthunlocked.com/lupusuk/...
Im sorry to hear that, obviously it's good news but leaves you in limbo again . it's not that we want positive results it's that we want positive help and answers , there seems to be a big problem with help available to people with such symptoms and negative bloods a big grey area which there seems no answer to it,🤷♀️🤗
Exactly - I felt so flat when I saw the Ana result even though as you say we're not wanting to collecting diagnosis - we just want the right ones with the right treatment
For years I have gone round and round in circles . I had as said hydroxy and steroids that helped therefore I know whatever it can be helped but frustration is they wont treat without diagnosis but do no more to help diagnose. I watched a particularly interesting video on myositis and for myself this is area I need to look in to more,there is much that will not show in the bloods and until in uk or my trust at least can look clinically as well as bloods they can never help as there ARE things that will not show, I was not given muscle biopsy when bloods clear(though ck raised) and this I believe is very detrimental with such symptoms and inflammation To my minds eye its ok ruling certain things out with bloods but use them to find the answer, when I have had things ruled out they stopped looking and discharge and this is where problems arise , they dont look further or clinically.Everyone is unique in presentation even with the same things, you cannot box people in the way they do.I do get pain but weakness is my main problem which seems to stem from inflammation ,I do not have the tender points so why label fibro🤷♀️.
we shouldn't have to do the research ourselves, no we are not trained but I cannot sit and not try to help myself either. I questioned dermamyositis in beginning .I was in a terrible state before steroids and alleviation of some welcomed ,but ongoing I know they are missing the diagnosis and when they discharge you as not fitting in box its not acceptable. now with post menopausal bleeding I fear my questioning.
It's so disheartening but please dont give up looking for answers , we know our bodies and sufferings and we are intelligent enough to know what fits and works for us, I wish id done a medical degree in the time its taking for me to get help I could have become a rheumy and likely diagnosed myself.
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