Undiagnosed & don’t know where to go

[Franbie]

I’ve had problems since 2001 when a maxillofacial doctor saw me about the constant swelling of my submandibular gland which was eventually removed. After this I kept on getting problems with pain in my jaw which was put down to problems with my TMJ. Just recently my parotid gland has started to swell it’s happened twice in the last couple of months the doctor gives me antibiotics but I know from past experience that this will just keep on happening. In 2020 I was sent for an ultrasound scan of my neck. It came back with news that my thyroid has hypoechoic nodules on the right side, I have swollen lymph nodes etc., on the results, which I’ve only just seen. The suggestion of the consultant radiologist was suspected sjogrens, the instruction to me said speak to doctor, however, I never knew about these results until I asked for my records to be shown on the nhs app recently, no one told me about this. I asked my doctor about this when I went about my parotid gland but he dismissed it.

My symptoms are swollen glands, dry eyes & mouth, coated tongue, extreme fatigue, joint &muscle pain, red angry rash behind ear, awful pain in my ear, ends of fingers & toes tingle & feel numb, angry pain in upper right quadrant, lost sense of smell 10 - 15 years ago. There is also a family connection with RA.

I’ve struggled for years with awful pain & illness looking everywhere for an answer but just can’t get the help I need. Because I have so many problems I feel the doctors see me as a hypochondriac. I’m really lost and don’t know what to do. Sorry it’s a bit long winded but I needed to put it all down in writing.

[weathervane]

Hi Franbie , by the sound of it you need a referral to a rheumatologist immediately. Im surprised the maxillofacial consultant didn’t suggest that as it should be your next step. Your symptoms all sound very similar to mine when i was diagnosed. Wishing you good luck and best wishes with get a diagnosis .

[Franbie in reply to weathervane]

Thanks for the reply. The maxillofacial dept., did refer me to a rheumatologist years ago who wasn’t helpful at all. I know my doctor won’t refer me to a rheumatologist. His idea is to give me anxiety meds which I know won’t take the pain & swelling away, or anything else for that matter! I have been referred back to maxillofacial so I’m hoping they will help me again. Do you ever get problems with mouth ulcers?

Thanks again for your help.

[weathervane in reply to Franbie]

Definitely push your gp as you need a referral to a rheumy! I felt the same way that it was all in my head but when i got a diagnosis it all made sense. Gps are not experts in autoimmune conditions, i have had to explain on numerous occasions to different gps what Sjögren’s is , but at least the gp was actually interested. I do get mouth ulcers, i use anbesol liquid and gargle with salt and water. Xx

[Franbie in reply to weathervane]

I will try. I suppose they could only say no xx

[weathervane in reply to Franbie]

Go armed with info and do not take no for an answer, best wishes 🙏🏼🙏🏼

[Franbie in reply to weathervane]

I will thanks. It may take some time as our doctors don’t have many face to face appointments. I will post any progress if and when I get some x

[Potplant]

As weathervane says, you need a rheumatology referral Franbie. Ask your GP for this and emphasise how much you're suffering, and struggling, with your symptoms. 🙂

[Franbie in reply to Potplant]

Hi. Thanks for the reply. As above I was referred to a rheumatologist by the maxillofacial dept., years ago and he was no help at all. I’m seeing the maxillofacial again so I’m really hoping they will help me. I just need to know why I feel the way I do and then move forward with less pain hopefully. My doctor has prescribed me anxiety meds which I know won’t help.

[Bosnel]

Hi Franbie ,My gp sent me to a rheumatologist. I think that’s a good place to start.

I wasn’t diagnosed at the time- my symptoms fitted into a number of boxes of different conditions. The main concern for me was my kidney function though as it dropped in half- not so much the classic dry eyes and mouth- etc. I do get a dry mouth and gland does swell at times but doesn’t cause me the pain you describe.

The rheumatologist sent me to a nephrologist and a diagnosis came from there- again my diagnosis isn’t a best/exact fit…and after my last flare up drs have found my body doesn’t necessarily respond in ways they think it should… but I think it’s the nature of autoimmune conditions that everyone will experience variations of symptoms.

The thing I struggle with is that symptoms are so generalised- fatigue, muscle /joint pain, etc- and because of this, there is no flashing sign saying ‘this is the problem’ and it can be difficult for others to actually understand the extent of the symptoms for us. Their knowledge/idea of symptom is not the same as they don’t know what it is to be in this symptom chronically.

It is also not a common condition, it doesn’t have a fix, it is a roller coaster that you are trying to manage. Also most sources of information only list symptoms as dry eyes, dry mouth, and maybe two more…I think this makes it easy for some to dismiss- the eye and mouth issues aren’t up there in terms of links to life threatening/serious chronic illness are they, so easier for people to dismiss- when in fact the list can be endless as everyone has their own variations and some of these can be life threatening….

I’ve come to realise we have to be more aware of what is going on with our body and if we don’t feel right or what is close to our ‘new normal’ there is something that drs need to help us with. I have changed consultants as I felt let down and a little disillusioned. I had gone along with who I’d been sent to, trusting they were good and were the expert that knew best. However their response to my hospital admission last year rattled me. I needed someone who I felt confidence in and felt they listened- were invested in my health and experiences. Luckily for me, the consultant and registrars who looked after me in hospital showed me a different manner - someone who actually wanted to help look after me- and I realised what it was like to have someone who was listening- and not only listening- providing me with the means to have any questions or worries addressed quickly.

In short I suppose I’m trying to say- don’t dismiss the negativity of the hypochondriac and feeling lost feeling- you are not a hypochondriac- you don’t feel right and you want and need answers. This is your mental health being affected by physical health! Drs need to take this into account too… if you don’t find answers mental health is going to suffer as well. Keep pushing. Go to others to get other opinions- your body is talking to you…you might not understand what it’s saying but you need to find how to manage things to keep it at bay…

I’m sorry I’ve rambled on and written you an essay here…I know the lost feeling. I felt alone too. I hated it. It was great to actually find groups like this to know others felt the same.

It felt so much better to have a definitive diagnosis- it gives you a starting point in how to proceed. A more grounded state of mind to start from than thinking you’re going crazy with all these symptoms!

For me, management of symptoms is not fixed, it’s an ongoing journey with no wonderful ‘you’re cured’ end point- and there are mountains and potholes- but you find navigators who help and you find your way through- you don’t stay lost…

I hope that helps, I’ll be thinking of you and sending out positive vibes 😊

Always here if you need more rambles through my experience… 🤪

[Franbie in reply to Bosnel]

Hi your reply was definitely helpful. It’s made me realise how hard it is and not just me. My doctors latest treatment for me is to put me on anxiety meds which I know won’t be an answer, they won’t take away the pain or the swellings etc., I know I have a host of symptoms and this can be hard for doctors when it comes to diagnosing. I have seen a rheumatologist years ago but he was not helpful at all. I am being referred to the maxillofacial dept., again who I saw in 2001. They were much more helpful because of the jaw pain so I’m hoping they will help again. If they aren’t the only way I will get to see a rheumatologist is if I go private. Which I will if it comes to that. Thanks for your reply.

[Franbie]

Hi forgot to say that my kidney gfr went down to 60 which is warning stage of acute kidney injury. I have to be careful of what I eat & can’t take ibuprofen.

[Tykle]

Hi Franbie, my Sjogren's started with swollen glands (could be any glands), which tended to swell symmetrically. I already had lupus so Sjogren's was suspected early on. As Weathervane has said, it sounds like you should see a rheumatologist. Try asking your G.P. to explain to you why he or she doesn't think it could be Sjogren's as the radiologist suspected and how it has been ruled out.

[Franbie]

That sounds like a good idea. My glands swell on one side only but it says on sjogrens site that this can happen . I’m starting to think about getting the antibody test to either give me confirmation or not as the case maybe . Thanks so much for your help x

[Krazykat26]

You've got a lot going on Frannie 🤗 I agree with the other replies about rheumatologist..they are the detectives in autoimmune conditions. Do u keep a symptom diary? It helpful in many ways..especially when approaching drs appts. I go through mine prior to the appt in order to mention the most prominent symptoms n then I can ask appropriate questions. Note everything even if you don't think it's relevant..swellings..fatigue..joint pains etc..include what the weather's like..how your diets been..n how you're feeling generally. DO NOT let any doctor fob u off with the anxiety/it's all in your head 💩!! When our bodies aren't right n so much is going on all the time it's natural to be anxious.. worried..stressed etc.

I have Lupus and Sjogrens..autoimmune conditions don't travel alone unfortunately 💜🌈xx

[Franbie]

That’s a good idea about the symptom diary I’ll definitely do that. It is very difficult trying to make my doctor listen & it’s even worse now with how short of staff the surgery is. You end up with a different dr every time which doesn’t help. I end up feeling guilty about taking up their time. x

[Krazykat26 in reply to Franbie]

If Doctors didn't have any patients they'd be out of a job!! 😹I was fobbed off at the beginning but I've now got a dermatologist and a rheumatologist..it wasn't just the menopause as one doctor told me 😤Autoimmune conditions are difficult to diagnose..it's not as clear cut as other illnesses. You must be persistent and having the diary helps me to direct the appointment rather than the doctor bamboozling me with medical speak. I write questions down before the appt n leave spaces underneath for their answers n I write it down there n then. If there's something I don't understand I ask them to explain what they mean. We have to advocate for ourselves n that takes practice especially when we feel rough.If u can take someone with you that might help. I go to all my appts with my husband.

I'm sorry I spelt your name wrong..I was tired last night. Don't give up Franbie..you're not alone!!

It might be an idea if you join the lupus UK community too. You'll discover there's a lot more people than u think living with autoimmune conditions. I'm a member there n I've learnt more about lupus from that forum than I have from any doctor. We know what it's like living with this stuff 24/7. 💜🌈Xx

[Franbie]

Very true. I was told it was my age, that was when I was around mid 40 . Unfortunately I’m on my own. I will look at the lupus site x

[Krazykat26 in reply to Franbie]

Now that's interesting coz I was in mid forties when things went all haywire with me!! I never went to the doctor's before this time so I wasn't a doctor botherer. I had no medical records to speak of..couple of normal pregnancies n that was it!! 😹Now I notice I've got quite a large file!! 💜🌈Xx

[Franbie]

Same here I was very fit up till then. It really made me angry when they kept on saying “what can you expect your getting older”

[SusieW2]

Looks like you've had some good advice. Try to find a Rheumatologist who has experience with Sjogren's Disease patients or at least, inflammatory diseases.Also re: the swollen glands, there are a lot of good videos online about encouraging lymphatic drainage. Here's one I've used youtube.com/watch?v=2Pxe3m3...(Not working as expected?). Be gentle, especially at first. A massage therapist may have some advice. I've had good results and it has relieved some jaw pain for me.

[Franbie in reply to SusieW2]

I agree the advice has been extremely helpful. Thanks for sending the video I’m going to look at that now. Thanks again for your help.

[harmony2]

hi. How did it go getting further assessment?

[Ontherun81]

Hi FranbieI was in the same position as yourself, but don't take no from gp! Can you speak to a different gp? Maybe adk for referral at a different Hospital? I'm now under Rheumatology, I have PLME, suspected Sjorgrens, Severe Fibromyalgia plus low Thyroid 😒I have suffered for years with mouth ulcers, angry red scarring on tongue, dry eyes which is now affecting my eyesight, completely dry mouth resulting in tooth loss, internal nodules on Thyroid, ear & throat infections ete etc. Only a good Rheumatology dept will point you in right direction, am currently awaiting lip biopsy, failed tear test! Fight for your health, you have a right to see a consultant. Why is there no Fibromyalgia Consultants? Or have i just been unlucky not to know about them? Immunology refused to see me as she wanted to see blood test results, even though my horrible symptoms are real🤷🏻Can't even be a blood donor anymore as my antibodies are off the scale! Do I cost too much on the NHS?

Stay strong, don't let them beat you! Good Luck xx

[Franbie]

Thanks for reply . I have just moved to a new area so hopefully I will get more help there than I did at old practice. It’s so hard when dr’s dismiss you when you see them as if your a nuisance when you know you are really suffering. I hope you get the help you need.