Frustrating Rheumatology appointment

[Kirbycreates]

Just had my first long awaited hospital appointment and now feel totally deflated and frustrated after a patronising consultation . Ever get the feeling they have made their mind up before you go through the door, it didnt help when she asked where I worked and told her I am a nurse working in the hospital at the moment swabbing covid patients think she couldnt get me out quick enough!! I have increasing bilateral joint pain the worst being my wrists, knuckle joints, toes, balls of my feet which can flare up increasing in frequency. I am stiff whenever I stop moving in the morning is the worst. The fatigue is affecting my work , I have bursitis in both hips. When I have over done it I feel flu like and glands flare up. I was told it is just tension in my neck from standing, she knew that without examining!, also my ankles couldnt be sore because my boots are laced too tight! I have a positive ANA result but doesn't mean anything I dont have raynauds or a rash, I told her I only get a heat rash on my chest when she asked. I was diagnosed as having fibromyalgia by my gp last year, when I questioned rheumatologist I didnt think it is fibro but would like an answer to what is causing my symptoms was told what does it matter what name chronic pain is given. Made to feel a complete idiot, I have never been off my work but I am struggling especially working in a hospital going thru a second wave. At least she has repeated blood tests and requested xray of wrists and feet.

[F1zz]

Oh I'm so sorry to hear that. Did she offer you any meds at all?

[Kirbycreates in reply to F1zz]

No not a thing, she seemed surprised when I told her I was on naproxen 500mg twice a day for pain , which helps.

[CecilyParsley]

Oh I am so very sorry. Sadly I think many of us here have had consultations like this. You come out feeling frustrated and desperate. I would ask for a referral to another Rheumatologist for a second opinion. At the very least you need a referral to the pain clinic to get your pain under control. Have you seen Occupational Health? They will be able to look at ways in which your job can be adapted for you. Good luck xx

[Kirbycreates in reply to CecilyParsley]

Thank you, good advice 😊, felt very insignificant after visit.

[KayHimm]

Oh, sounds like this doctor’s manner was very poor and not helpful when these difficult diagnoses are being considered. I am so sorry you had to go through.

I will try to help with what I think she is doing and saying medically. The ANA alone does not give her enough to diagnose. With lupus, she would see more signs - rash, inflammation in the organs, abnormalities in blood work. On the other hand, she ordered xrays of your joints. Frequently when people post on here and have a positive ANA and painful muscles and joints the rheumatologist diagnoses fibromyalgia based on exam. Xrays are not ordered. I wonder if she noted inflammation in your joints. She also ordered additional blood tests, so she is looking for more evidence.

Again, sorry you had to endure this experience but the rheumatologist seems to be pursuing a diagnosis.

Best of luck with this.

K

[Kirbycreates in reply to KayHimm]

Thank you for the advice, much appreciated. 😊

[stiff19]

I sympathise with you greatly and understand how demoralising this can be with the flippant remarks.i find these remarks so unacceptable and unprofessional, and happening too much with too many. I’m glad they have taken bloods and xrays of feet and hands. Stick with pursuing , it’s damned hard to swallow appointments like this but you must for your own sake push forward and I wish you all the best, you are not insignificant despite being made feel that way 🙏🙏

[Kirbycreates in reply to stiff19]

Thank you, it's the first time I have ever posted on anything, I really appreciate your kind words.

[stiff19 in reply to Kirbycreates]

I have very much been where you are and felt the same or worse as ayou work in hospital it must be very frustrating to be treated this way. . You’ve had some test results and having more tests which I hope will help with diagnosis but I don’t know what help we get with the way we are treated in this way as I don’t think it should continue but have no answers for it, but it’s damaging and a health specialist should not demean or make light of why we attend them when it’s the last place anyone wants to go , we go for a reason., not being our boots are too tight. I’m sure you will be glad you posted you will get support here and advice from the people here with knowledge and experience. 👍 🍀

[nellie_4132]

That sounds really rough, it makes me feel so much luckier to have my rheumatologist. She should be doing blood tests to determine if there is inflammation in your body, such as ESR and CRP. What other blood tests has she ordered? Are there any that are actually specific to lupus? I was diagnosed based on my ANA, anti-DNA, irregular blood counts, rashes, and joint pain similar to yours. I could barely walk down the steps. You don't necessarily need to have Raynaud's or a rash to be diagnosed as my rheumatologist thinks I could have been diagnosed a year earlier than I was and at that point, I didn't have any rashes, and I haven't ever experienced any Raynaud's. I would at least try to get a second opinion. I'm sorry you have to go through all this. It definitely does matter where chronic pain comes from as mine came from lupus and now I have very little after starting treatment. I hope you receive answers soon.

[Kirbycreates in reply to nellie_4132]

Thank you , it's interesting to know you didnt have raynauds or rash, she gave me the impression I needed to have both, I have had ESR CRP and repeating ANA so will have to wait and see .

[Amakura]

How frustrating! I've been through very similar but got a second opinion and I had other medical specialist who were persistently fighting my corner. In fact, they were the ones that suggested to get a second opinion and assisted me in gathering and carrying out blood tests in preparation for this. (Reason being, they know what they're looking for and can preempt what they're going to say). By doing so, they unintentionally identified i had discoid (of the scalp) during this process. In the end, I was well armed with more than sufficient factual evidence.

I also don't have Raynaud's and even a typical lupus type rash. My discoid does not present in the usual way and as a consequence, it was completely ignored. Well, I was fobbed off, in fact.

Do you have any other specialists that can help fight your corner aka make a case for you? If not, can your GP refer you to a specialist, other than the Rheumatologist, that will be able to rule out the obvious and their subsequent findings will be of use for your second opinion.

Just trying to think of other ways to not only push this along but to get you a diagnosis asap.

[Kirbycreates in reply to Amakura]

Thank you, once I get the results of the latest blood tests, I'll try to change consultant, the rheumatologist I saw has just taken over from one of the rheum docs that had been there for years.

[MichelleHarris]

you.38degrees.org.uk/petiti...

I’ve just seen a Rheum for the first time this morning too and I’ve just signed this x

[Kirbycreates in reply to MichelleHarris]

Good article, thanks Michelle, very true worth signing for.

[Nvrenfhorses2]

Awe you poor thing... I think we’re twins. I have Lyme disease and and it’s affected every system. No one new what was wrong with me. I found a wonderful caring rheumatologist who did a nuclear bone scan for me because I have suffered just like you for years. I’m 51 and walk like I’m 91. The test showed significant uptake in my wrists hands(they lite up like a Christmas tree) , feet, and hips. My blood work is always normal except for low white cell. I believe the Lyme has cause my arthritis, but aches are through my whole body. I have been on Hydoxycholorquine for 7 months...not much difference. Took Prednisone for a whole body rash and felt amazing! I think you’re going in the right direction with your tests. I do have RAYNOIDS. And a list of other painful issues 😔 I hope you get some answers, the suffering is just awful.

One thing I do know ... I was a fitness instructor, and although it became increasingly difficult, it kept me stable! I stopped teaching and I became a shell of who I was. Now I can’t squeeze a shampoo bottle. Even my part time desk job,forced me to get moving. I suffered for it, yes, but no more than sitting on the couch and getting up. And Tylenol helps me too when I can’t bare it. If you have a loved one to help advocate for you , it can be more powerful in a doctors meeting. For some reason I don’t feel like a hypochondriac with my husband there to back me up.

Good luck🍀 And I hope you feel better!

[Kirbycreates in reply to Nvrenfhorses2]

Thank you for, you're kind words and advice, it has meant a great deal to me.

[Vespa10]

If you don’t get a better service once your results are back I would ask for a second opinion and/or write a formal letter of complaint to the hospital. The way you have been treated and spoken to is totally unacceptable. Good luck.

[Kirbycreates in reply to Vespa10]

Thank you, the support on this forum has meant a great deal to me.