Hi - New and Undiagnosed

Hi - I'm new here, have been reading a few of your posts and thought I should come out of lurking...It is a bit of a long rambly one i'm afraid because I don't know which symptoms might relate to a broader condition or whether it is just getting older/separate conditions (i'm 39). I also feel like I sound like a moaning Myrtle sometimes!!

My problems started about 10 years ago with extreme fatigue and unremitting pain between the shoulder blades. I didn't bother going to the docs because they tend to be quite dismissive (and tell me to lose weight!) Also a friend of mine was diagnosed with fibromyalgia and had similar symptoms so I just thought what's the point in a diagnosis with no cure so didn't go (sounds odd on reflection but I should also say I was a nurse too and nurses often put off going to the docs!)

Anyhow that friend has since been diagnosed with MS (many more symptoms than those described above) and the fibro was a misdiagnosis..so it made me think perhaps my dismissal of those symptoms was a bit silly...3 years ago I had an awful bout of flu which ended up with sinusitis for 8 months with at least 8 courses of antibiotics and steroids too (even had septoplasty surgery which didn't help). I ended up with permanent tinnitus which was devastating but I have now gotten used to.

At that time my platelets were raised but GP thought that meant nothing...I also still have the overwhelming fatigue and had mouth ulcers which pharmacist said was probably low vitamin B so to eat more chicken...I have been diagnosed with hypermobility with a Beighton score of 9 (which the physio was impressed with!!)

Since then I have developed big toe, knee, back, hip, neck, hand and elbow pain and pain in my heels on waking. I saw the GP early this year and was referred to physio again, she has written to GP to refer me to Rheumatology because she thinks I have arthritis... GP did bloods tests which were negative for RF, ESR etc but positive ANA. He said he didn't think that meant anything..

I went back to the GP this week because the hand pain developed in the last 2 weeks...he has agreed to refer me to Rheumatology but said I was 'pushy' and if I wasn't careful I might end up on drugs that suppress the immune system and cause leukaemia!!...I did also have a one off rash on my chest when I sat in autumn sunshine (under my clothes/I was covered up..it was bright red and shaped like a bow-tie!! but disappeared the next day. I do have a photo).

So I am going back tomorrow after more bloods and hopefully he will refer me to Rheumatology (i'm bizarrely hoping for abnormal bloods so he will refer!!) Then I start the journey of maybe getting a diagnosis. I don't want it to be lupus...but I think the symptoms are pointing in that direction...

I wanted to know if there is anything else I could/should be doing whilst being pushy!! Without a diagnosis it is difficult but has anyone found anything that helped painkiller wise/for fatigue...

Thanks in advance and sorry for long post!!!

23 Replies

oldest β€’ newest
  • Hello scscsc: am glad your here, glad you've posted & GLAD of all the details you've included

    My feeling is: for sure you deserve to be referred to a rheumatology clinic that focuses on immune dysfunction & connective tissue disorder patients.

    I'm dismayed by your gp's reaction: as a nurse, he must know that you, more than many of his patients, understands the risks we accept when undergoing pharmaceutical treatment for autoimmune conditions...obviously, we go into the treatment process with our eyes as wide open as poss...if the side effects of any treatment outnumber the benefits, we reconsider. After all, the diagnostic & treatment process is never ending, in many cases πŸ˜‰, mine for sure...I am 63, have infant onset lupus + vascular ehlers danlos hypermobility + an early onset primary immunodeficiency & early onset Sjogrens + a typical collection of other co-morbidities...in patients with these complexities, no treatments are set in stone

    I found it v tough to cope with stubborn levels of fatigue & pain during the first few years of my treatment process...I'm sure you'll get lots of great replies to your question. For now: have you tried low dose amitriptyline? And have you checked out Lupus UK's publication: lupus fatigue & your lifestyle:

    lupusuk.org.uk/publications/

    Also there was a great discussion on here about fatigue recently:

    lupusuk.org.uk/managing-fat...

    I'll just add: recently at a lecture given by one of my lupus clinic consultants, she gave us this advice:

    To reduce fatigue: try all aspects of lifestyle management techniques along side your current meds. IF your fatigue doesn't reduce, then take special inventory of all your other symptoms that associate with fatigue & use this inventory as evidence for pressing an adjustment to your prescription treatment plan

    Hope you'll keep us posted

    πŸ€πŸ€πŸ€πŸ€ coco

  • Endorse this reply unequivocally!

    PM

    🐚

  • Barnclown has just about summed up what I would have said, some very good stuff there.

    Your gp sounds horrible, well I would continue to be pushy for a referral to rheumatology which I think is completely justified. I sincerely hope you find a sympathetic rheumatologist, what a thing for a gp to say... These medications save a lot of lupus sufferers from kidney failure and for some of us give us back our quality of life despite the risks that are fully discussed before starting on treatment. Sorry just annoyed on your behalf at your gp...obviously interpersonal skills maybe not his strong point!

  • They are a funny lot, these GPs. The ones i have seen in the last 18 months have ranged from dismissive and apparently ignorant to fabulously supportive (I am still glowing from a consultation last week, where the GP - not my usual one - actually squeezed my hand, looked me in the eye and said, "you have had a really hard time of it lately, and I want you to come back to see me again next week and we'll see if we can't get to the bottom of what is going on" - I nearly broke down and wept with gratitude!)

    Aaanyways, even though I too am a nurse and keen to engage with the clinical details, the thing that has most hampered me has been not having full access to results. So my suggestion would be to always see whichever of your GPs is most willing to copy written reports to you. For example, you mention a 'positive ANA...which didn't mean anything'. As you know, ANA results form part of a wider picture and have degrees of positivity. If you are just presented with your GP's conclusion, you have no way of discussing this wider picture - see if you can get a GP who will pas you a printout that says your ANA is positive at a titre of 1:320 or whatever.

  • πŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌ

  • Thank you so much for your replies, you all sound like you are dealing with so much so I'm extra grateful for you taking the time to read my post. I will read through those links Barnclown. Rolybear I was so cross with the GP but had to bite my tongue because he did eventually say he will refer me after more bloods.

    I was offered amitriptyline by the last GP because he said it might be fibro and it can help with sleep. I wasn't keen because I didn't feel that we had excluded enough alternatives to fibro (could be fibro+something else) and also cos I know it can cause weight gain which is something I am trying to avoid as it seems impossible for me to lose weight..

    I also didn't mention I have sore/tired eyes most of the time and melasma around my eyes but don't know if that's relevant.

    Whisperit - I had thought of asking for the results but didn't want to push my luck I will try to ask tomorrow what the titre level was. I wish the GP could treat me as an equal instead of trying to scare me with potential side effects for a drug I haven't been prescribed yet!!

    I used to have a nice GP but we had to move when the landlord sold the house...hey ho I will keep on being pushy!!

  • Hi,

    I think it's important to push for a Rheumy referral but try and be open minded about the cause of your symptoms.

    From reading your post there could be a few causes from Ankylosing spondylitis ( heel and peripheral pain ) to some forms of Vasculitis ( sinus problems and arthralgia ). Mouth ulcers can be a symptoms of Ankylosing Spondylitis, Behcets Syndrome and Lupus as well as other auto immune things.

    Document your symptoms, take photos of any funny rashes, ulcers etc. Some forms of auto immune disease ( including Ankylosing Spondylitis and some variants of Vasculitis ) can present with normal inflamatory markers ( CRP & ESR ). ANA can be slightly positive in a few things, mine was and I have a spondyloarthropathy/ Behcets syndrome crossover.

    Get your GP to document your request for a referral in your notes and the reasons for refusing a very reasonable request. Then ask for everything in writing. Immunosupressants are never prescribed lightly and the risk of Leukemia etc are vastly overstated. That type of comment tells me that your GP understands very little about the risks associated with auto immune disease itself ( including end organ failure ). Good luck and don't take no for an answer!

  • Thank you Keyes and yes of course I will try to be open minded when I do get referred...and that's a good idea re documenting everything. I'm trying to keep lists of my symptoms because I get forgetful...my cousin has ankylosing spondylitis so that could be a possibility too (aunt has RA). I didn't realise mouth ulcers were a symptom of AS...There is something going on though and I deserve to be on the best treatment plan...and yes the GP was just trying to frighten me out of asking for the referral I think...which still surprises me given that the physio has requested it...

  • Yes, do document all your symptoms and medications. I have just managed to get into the habit, and it makes a huge difference when I am trying to work out patterns - there is no way that I could otherwise keep track of whether my chest pains started a week after starting mycophenolate, or a fortnight, and whether that coincided with stopping my Fragmin injections or was that the week after and was it that Friday that I passed out in the bath...?!!? It's not like the old days when I just got a cold, and then got better and could forget about it!!!

  • That sounds so awful whisperit...

  • Thanks, scscsc. But I am fortunate in other ways - I have a safe, warm house and supportive friends and family. Keeping records is a way of feeling that I have some sort of control over what is a pretty scary situation atm (another blue light trip to A&E on the weekend). And when I look at some of the stories of other people here, I can only marvel at their resilience and count my blessings x

  • Grrr GP's like this make me so angry. He doesn't think the ANA's meant anything? I'm assuming he is not a Rheumatologist and therefore should not be making such potentially harmful conclusions. He is there to refer you to an expert when it is something beyond his scope and that is exactly what he should be doing.

    I hope you will be pushy and if you don't get anywhere then perhaps see another GP at your surgery if possible?

    Sorry for the angry rant and please keep us posted. X

  • I didn't know immunosuppressant drugs can cause leukaemia is that true? I have been on Mycophenolate for years noone has ever told me that .

  • All immunosupressants carry side effects and risks, as far as I am aware most of the research regards cancer has been in patients who receive immunosupressants after an organ transplant. This is a good article discussing the risks that points out that Lupus itself increases your cancer ( and cardiovascular ) risk. Unfortunately no medication is risk free.

    hopkinslupus.org/lupus-trea...

  • Following on...you may find the downloadable appt prep guide, symptom checklist etc on this website useful while prepping for rheumatology ...I have over the years & others here have too...these are just as useful for other systemic immune dysfunction conditions & connective tissue disorders as they are for lupus

    usinlupus.com/tools/appoint...

    usinlupus.com/tools/lupusch...

    usinlupus.com/tools/mylupus...

    Hope you'll keep us posted

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thanks Barnclown - those are great links.

    I've just got back from the GP appointment and don't know whether to be angry or cry to be honest!! He said "Don't keep looking for something wrong with you..."

    My inflammatory markers were normal but ANA "strongly positive" (I didn't push further for an actual figure cos he has me down as neurotic now).

    I showed him my pic of the rash - and he said that i'm looking too much for a problem. I explained that NO I am feeling ill all the time and am looking for what is wrong with me.

    He then said that he doesn't think there is anything wrong with me but if I really want to (Subtext - if I want to waste their time) I can be referred to Rheumatology. So I said yes please!!

    So it will be a few months before I can maybe find out what's wrong, but at least on the right path now. I hate the fact that having genuine concerns for your health means that you get labelled neurotic....I'm a single parent holding down a job so it's not like i'm not coping with life...and even if I was neurotic it doesn't mean I don't have something wrong with me...

  • GRRRR...he's a real winner, that GP.....am glad you're standing firm...and I agree with the way you're thinking about all this πŸ‘πŸ‘πŸ‘πŸ‘ take care πŸ€πŸ€πŸ€πŸ€ coco

  • Hi scscsc,

    I'm sorry to hear that you are having so much difficulty with your GP, but at least you will now have a referral to a rheumatologist for further investigations. If you decide you want to change GP, you can find more information about doing this at citizensadvice.org.uk/healt...

    If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • Hi the charity Lupus UK have a lot of good info eg here is a link to info about diagnosis .. lupusuk.org.uk/diagnosis/.

    It is worth asking what the ANA titre was as this indicates how positive for that you are, ( some low titres positive exist in general "normal" population who do not have lupus so that may be why Dr was idsmissive of it). Also ask if you have had other immunological blood teats such as anti- dsDNA. This is a good link that explains blood tests that you are likely to get tested for thelupussite.com/lupus_diag...

    Your extreem fatigue does need to be addressed by your Drs, even if it's not Lupus it would propbably help you if you could have a diagnosis that explained it. However even with a diagnosis there is not a lot Drs can do about extreem fatigue. I have SLE, various meds yet to manage my fatigue I don't think any of my meds help that much.

    The things that work the best for me are having a good sleep routine that is consistent most of the time.

    Work out how much sleep you need to function without oversleeping, (you may find you need more sleep that the "normal" 8 hours, need naps in the day, or need to really push youself not to over sleep eg ( eg I have to have a minimum 10 hours sleep. I tend to sleep all night, most of morning but use an alarm to get me up after 10 -12 hours up as otherwise I could sleep all afternoon through until the early evening, but this is not actually healthy for me if I did sleep that much).

    I also try to take it very easy in first hour that I wake as I wake with some stiffness and feeling "almost hungover" and as if I could just carry on sleeping.

    Also try get some gentle exercise ( gentle exercise is good if you have lupus but like everything when you have lupus you have to listen to your body and pace how you exercise such as build up slowly do it regualrly don't do too much on any one day or week)

    Also paceing your lifestyle and avoiding too much stress and too much sunlight/ UV are all good to help stay "as well as you can be" with Lupus

    Good luck with everything

  • Hi all

    I heard today my Rheum appt will be 23 Jan...it seems like so long away but I know time will go quickly with Xmas sort of around the corner...and I've felt ill for a long time so I can keep going...I'm trying not to pin my hopes too much on the appt either as I gather from many posts on this site that I might not get a diagnosis right away. I'm going to spend some time recruiting someone to come with me who can make sure I say everything I mean to say

  • Hi scscsc,

    I'm glad that you've got an appointment. If you want to be seen sooner, it may be worth phoning the consultant's secretary on a regular basis to see if they have been an cancellations and whether they are able to fit you in earlier?

  • I might do that I don't like being pushy tho (paranoid now the GP called me pushy lol)

  • The decision is yours, I just wanted to present the option. I think it is good to be a bit pushy. It's important to have an active role in your own healthcare and make sure that you are being treated appropriately.

You may also like...