Nothing gained by rheumy appointment : Appointment... - LUPUS UK

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Nothing gained by rheumy appointment

Bronn
Bronn

Appointment with rheumy today, started well no panic attack then went down hill from there. The nurse taking my blood pressure wasn't looking what she was doing and wouldn't listen when she caught my new scarf in the cuff (arm wrap) torn scarf as cuff was coming off because it was caught on velcro 🙄 no apology nothing. Then went in to see doctor, she asked how I'd been doing the last month. Why she asked I really don't know, no attention paid to how I felt about losing masses of my hair, increased fatigue and nausea and headaches and rash due to sun. She said last months bloods were fine, so I said why am I in so much pain then. Oh that's probably your fibromyalgia. Last month she said I would restart mycophenolate, today she said that it was poison ?????? (All medications are basically poison though are they not?) she said that as I've been having a lot of infections since last September (9 altogether) she thought my body wasn't coping. I could have told her that, and I haven't done any of her training. I asked what was she going to recommend and she said prednisolone and I'll see you in 2 months, and I can refer you to the fibromyalgia clinic, oh and you need to get these blood test done today please. Sorry to go on a bit people but I'm hacked off. I've suffered with fibromyalgia 35 years RA and Lupus about 7 years so think I know fibro pain, but rheumy wasn't interested. But what about my increased fatigue hair loss (my hair loss has been going on for a while now but not mentioned it to her before) and swelling on both hands, nothing she said absolutely nothing; so what about my blue toes and bruising eveywhere even though I haven't done anything to get them and my shaking hands and jerks? Nothing absolutely nothing. So what's the plan I asked, we can't plan she said. For heavens sake this is my life she's messing with. I wanted to scream so loud I think they'd have heard me the other side of the world. The word for today is nothing people, there is no word(s) because she said nothing did nothing and seemed to care for nothing. On that note I'm going to take some pain remedy and relax because today was a long day for NOTHING, nothing to my questions anyway 😡😡😡

21 Replies
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How awful , to just be ignored. I hate that these illnesses disguise so many of the symptoms. Trying to relay the level of pain to anyone can be near on impossible at times.

My hands have only recently become affected, so I’m guessing the illness has progressed. Maybe try and see your doctor see if you can get something to manage the pain, although this just helps to mask the disease rather than finding out the root cause!!!!!

X

Bronn
Bronn
in reply to Lisalou19

So sorry your illnes is getting worse Lisalou, I think the problem with these rheumy guys and girls is that they've never had to suffer anything so no matter how hard we try to convey what's going on in our bodies they just don't get it, studying to become doctors doesn't mean you can understand an illness completely. I had very little sleep last less than ever, fretting over that darn appointment, wishing not to have a panic attack. It took me ages to go into the hospital then I get that reaction. Ok it might be vain but my hair is falling out faster than my 2 dogs, 1 alsation cross Rottweiler, his hair is long and being summer he's losing, but I'm losing mine by the bucket full, there's more of my hair on floor at the end of the day than the dogs. My hairdresser always used to comment how beautifully thick my hair was and now she's feeling sorry for me. I can handle that my rheumy didn't know what to say bout it nobody else does either, but direct questions not being answered is darn right rude. Yes I agree the pain is impossible at times, so is the fatigue, I spoke with GP last Thursday and she has me on 40mg morpine tablet form twice daily and 10ml Oramorph upto 4 times daily. It depends which doctor at the surgery you speak to some want you off it beause it's so expensive while others know there isn't any other way to cope 🙁 So if your illness is increasing please go and see your GP,often more sympathetic and willing to listen and try to help. Perhaps my rheumy was having a bad day, but that's no help to me.

Lisalou19
Lisalou19
in reply to Bronn

I have my first appointment under the nhs tomorrow with a rheumatologist/dermatologist. I finally managed to get here after paying to go privately in January.

My hair is also falling out at a rate that makes my heart skip a beat when you see the loss after a hair wash or brushing. I’m letting my hair dry naturally tonight so when I go tomorrow I can show the extent of hair loss as my hair looks like I’ve been electrocuted with all the small stubs of new hair growth .

I’ve seen so many doctors over the years, I’m praying this wait is going to shed some light.

Unfortunately like yourself the anxiety build up is so extreme before an appointment

X

Bronn
Bronn
in reply to Lisalou19

Good luck I really hope you have an appointment that secures you more knowledge and gets you the help you require. Hope you manage to rest tonight, as believe me if my head had been in the right place today my rheumy wouldn't have gotten away with being so rude. Will think of you tomorrow, let me know how it goes 🤞🏻

Lisalou19
Lisalou19
in reply to Bronn

Thank you.

And if you need to off load, please feel free to send me a message.

I hope you get your strength back in a day or 3. The lack of sleep is our worst enemy in so many aspects of this battle x

Bronn
Bronn
in reply to Lisalou19

Thank you, same to you. Yes I agree lack of sleep makes this battle an uphill struggle. Good night rest well 😴

I can completely relate. Just yesterday my GP phoned me to red to me what the Rhuematologist wrote... he doesn't even want to see me even though Dr Hakim in London wrote to him. He told me to go private! Haven't slept and sitting in bed with my jaw clenched and tears.

Your reply has made me so upset for you. To be honest I ended up going private in the end, as no one was hearing me. If you can tell me a little more about your story.

Also if you need to talk please inbox me and I will be happy to share my phone number. Please do not feel alone

X

Thank you very very much for writing. Feeling very alone... I'm not thinking straight just now. I will reply when I can gather my thoughts and stop tearing. xx

Hi ladyupunthelake, I hope you are feeling more relaxed today. Telling you to go private was not right, what if you are financially unable to, and what about your right to be seen on the nhs? Doctors just don't seem to care, either for our health or for our feelings. Why do they even bother with so much learning if they're not going to do their job correctly? Bloods don not tell the whole picture.

Thank you for your thoughts 🌻

I think that is terrible. Poor you x

Thank you Hedge end 🌻

I am wondering if what you are experiencing is this doctor’s communication style more than her not listening. What I heard was that she is putting you on prednisone — rheumatologists only use this medication when absolutely necessary — and she is seeing you in two months to see if you improve. Your labs looked good last time so maybe that is why she is suspecting that it is the fibromyalgia that is causing a lot of the pain. She also asked for more bloodwork. Is it possible that your doctor is concerned about you and listening to you but that she does not respond to every symptom verbally but is noting them? I understood your frustration but I have felt the same as you and found out years later that a doctor clearly noted what I had said.

Bronn
Bronn
in reply to KayHimm

I understand where you are coming from. I am already on prednisolone and only came off mycophenolate due to infection. Rheumy had sad last month I really needed to go back on it, then yesterday she said it was 'poison' that all meds were poison. She said no comment whatsoever to my new symptons. I think I know my body just a little more than her and something is definitely not right, and it's not the fibromyalgia. She was staring out of the window most of the time so clearly wasn't noting what I had said. It's as if when my husband is talking to her she's listening 100% and all ready for action, when I talk to her she's laid back and not a care in the world, wish my husband was with me yesterday.

Awful!!! Really, Sometimes the dr just isn't in the same room!! Just not right

Bronn
Bronn
in reply to leslieliesel

no leslie it's not right, I totally agree with you.

I agree.They just don't listen to what you say. It's definitely not right. We're people after all, not just numbers or a text book question.

Bronn
Bronn
in reply to HedgeEnd

It's totally not right, but when you try force an issue you get labelled with being hypochondriac or sentive to issues. It's ridiculous to have to trust these people to do the right thing but you have no confidence in them doing that anyway. I know the nhs are being forced to make cut backs wherever possible but its our health that's suffering due it. Just because bloods ok doesn't mean I'm not genuinely suffering, I didn't ask nor want to be sck.

hello , i really feel for you !!! have the same with my rheumatologist appt , my hands,feet and neck are so swollen my skin splits ...steroid cream .. been left on prednisone for 4 years 4 bloody years !!!!!! my methotrexate does not feel like its doing anything anymore and am so bloody fed up with feeling like crap . but hey my blood tests seem ok ? i do wonder if its because they just dont know what to do ,but neither do i . sending you my best wishes and hugs xxx

Bronn
Bronn
in reply to samlewis67

Prednisolone sucks! I hate them, sweats unable to sleep. I think you may be right with rheumy not knowing what to do, where does that leave us?

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