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Finally being referred to rhaumatology!

Feb 03, 2017 9:35 AM

Had my telephone appointment with my GP earlier and she went over my test results....urine came back from the lab fine but when the doctor dipsticked it there was blood and a little protein in it so she wants me to do another urine test Monday morning to send off again too make sure it's all ok. Blood results came back as RA negative and so did all the others apart from the other imflammation which came back with raised markers so she thinks I don't have fibromialga but she's unsure why they are raised so she's referring me to rhaumatology.....at last!!!!
She's a little concerned that I'm having a lot of joint pain and RA came back negative but the other one came back with raised markers....I think she was expecting RA to be raised with all the joint pain I've been having IDK

Main thing is that I'm now being referred so that's a start

Feb 03, 2017 10:42 AM

That's great that she's referring you to rheumatologist. I hope you can get a dx and help.

Feb 03, 2017 1:59 PM

Good! And you know, there are other forms of rheuma besides arthritis, and not every form shows the marker in your blood. Hopefully the waitinglist won't be too long at the rheumatologist!

Feb 04, 2017 2:54 AM

Thank you both, I'm actually really pleased as my Dr has been so dead against me having fibro and kept dismissing me saying it's all to do with my PTSD and anxiety.

My appointment with the rhaumatologist is on the 14th of March....I was surprised to be offered an appointment so quickly!

Feb 06, 2017 4:18 AM

Hi Sezzy, finally you're on the road to a dx 😊. 14.03 will be here before you know it. Mind make a list of all the things you want to say and questions that you want to ask. Good luck 🍀🍀 xx

Feb 06, 2017 6:57 AM

Thanks Cinders I'm hoping to get answers just so I know what I'm doing is right or not. It's a step that my GP had been putting off until she couldn't answer why imflammation markers were showing in my blood tests but RA had no imflammation markers.

I've already started a list.....I've got a few lists going for different appointments because I'll forget what I want to know but I'll have to be careful not to mix the lists up and ask them questions and my daughters diabetes and ask my daughters diabetic team about my issues!!!! 😂😂😂

How are you doing? Have ESA given you a new date yet for your assessment yet?

Feb 06, 2017 7:18 AM

I shouldn't laugh but you made me chuckle I can imagine speaking to a diabetic dr/nurse about chronic pains instead of diabetes 😊.
The Rheumatologist will probably request further bloods and scans. Here's hoping you finally get some answers.
Yup it's next week at 9am, should be fun. I'm having to take the train as I don't know where it is and I have been told by my Dr make sure I do not go without taking my meds both the night before and that morning. She is adamant that I am storing up problems for myself.
I finally have my pain clinic appt tonight, so here's hoping I get some answers from there 😊

Feb 06, 2017 8:01 AM

Cinders truly I would do that as well!!! Could you imagine the face of the rhaumatologist with me asking him questions about blood sugars and hypos etc....?? And asking my daughters diabetic team about what can be done to help my pain without increasing my meds and why I'm getting pain and fogginess all the time??
I think the diabetic nurse would say that I'm in the wrong meeting then her and my daughter would have a little chuckle!!! 😂

I hope the pain clinic are able to answer some questions for you and maybe even suggest a different med that might help you more than what you're currently taking.
I hope the interview goes in your favour and remember the advice I said last time about meds and not saying you're planning on being on ESA for long because they will put you on to JSA, and tell them about your bad days not your good days, I made the mistake of saying I have 1 or 2 good days a week and they put me on to JSA, they didn't take into account my bad days.....the only thing they gave me points for was my social anxiety x

Feb 06, 2017 12:18 PM

Oh bless you, I don't know you but for some reason I can just imagine 'you' talking about these in all earnestness 😂.
My pain clinic appt went ok, I think. He's told me to attend some classes for chronic pain education and then another class for a pain management program, he's also suggested CBT and an alteration of nearly all of my medication.
Thank you for the reminders on my assessment, I'm hoping to get a friend to go with me as I really don't want to go alone 😏. I've managed to get letters of support from my Dr and CPN. Keep everything crossed for me 🍀🤞

Feb 06, 2017 1:38 PM

I'm glad your appointment went ok, they haven't suggested anything like that to me so I will ask my pain nurse about that when I see her on the 24th Feb, I tell you that week is going to be hard....my daughter has her diabetic clinic on the 22nd I have my court appeal on the 23rd then my pain clinic on the 24th!!!!
I'm frazzled just thinking about it all 😲😰😨

Feb 06, 2017 1:40 PM

I'm sending you positive vibes and keeping everything crossed that it all goes well for you 🍀 x

Feb 06, 2017 1:43 PM

Thank you 😊.
You're certainly going to be both emotionally and physically exhausted by the the time the end of the month gets here. I hope they all go well and you've got the right head on for each appt. as for your tribunal, kick some ass 😊.
The classes are suppose to teach me to be in charge of the pain rather than let it take over, lord only knows how I'll get on with that 😂

Feb 06, 2017 1:56 PM

I've been trying to do that now for nearly two years and I'm still struggling with it! Today I've literally spent the whole day in my car driving around or parking up in supermarket car parks because if I'd gone home I would have gone to bed and left everything including the school run. Dinner has been bacon in french stick with grapes, carrot sticks and apples....it had to be easy and quick otherwise I wouldn't of done anything and trust me that is one of the healthiest fast food I had the choice of doing!!! Everyone wants us to be healthy and buy healthy but then make all the healthy food soo expensive and all the cheap food is the processed full of junk crap!!

Feb 06, 2017 2:02 PM

You must be ready for your pjs and to go hibernate now. Hopefully to will be able to do just now or sometime soon.
I've had one of those days too been out and about in the car from 10 till 6, Pasta an salad for dinner here. I'd have happily eaten yours though. I have to say I agree but then I think that shopping in general has suddenly taken a price hike.

Feb 06, 2017 2:24 PM

Sorry didn't mean to go off like that, everything is going round and round in my head today....thinking and over thinking then over thinking some more!!! My daughter has been struggling with her diabetes and her diabetic nurse isn't overly happy with me or her school and all the appointments I've got coming up are making me want to shut down....my way of not coping is to sleep hence why I've been in the car all day to stop me from shutting down and I'm hoping bedtime brings me some sleep tonight!

Feb 09, 2017 4:28 AM

Sezzy it's ok to rant or go off that's one of the things this app is good for us.
I hope all goes well for you and your daughter I will be thinking of you both 😊

Feb 09, 2017 7:15 AM

Yay!! Hopefully they can finally give u the answers u been searching for

Feb 10, 2017 2:24 AM

Thanks guys,

Feb 14, 2017 7:10 AM

Sorry for the late reply, but I've been off for awhile as I've had some really bad days and the Fatigue has been awful and I have been fighting bronchitis again and my kid's being ill, and did a girl's day out and went to the movies to watch A dog's purpose! Great movie by the way but it will make you cry! Hubby is thinking about taking me to the movies tonight for my birthday, what movie I'm not sure yet lol!

Anyway I am so happy that they finally got you a referral to go to a Rheumatologist! Here's some advice, besides the questions you may want to ask also keep a list of your symptoms and what you have been having, even if it seems like nothing. If thier is one thing I've learned since being diagnosed with Sjogrens Syndrome is to make a list of my symptoms even if it seems small.

Good Luck at the appointment with the Rheumatologist, I'll be praying for you!

Feb 14, 2017 8:07 AM

Happy birthday fellow Aquarian I hope you have a fantastic day sjogrenspain77

Feb 14, 2017 1:10 PM

Sorry was going to write more but I've had a couple of appointments today.

I hope you're all feeling better, that sounds like you had a rough time recently 😢 I hope your days get better and your days are better.

Thank you for the advice i will definitely do a list of symptoms.....I'm going to have to rewrite my questions because I've lost the book I had them in. I have a feeling I dropped it out of my bag when I've been out the last couple of days.

If anyone has any pointers because my head is completely blank!!!

Feb 17, 2017 2:19 AM

Hi Sezzy. You sound similar to me. My RF wad negative but inflammation was up and I suffer from calcific tendonitis in my hip. The rhemy said that my pain pattern is not quite and RA pattern so she wouldn't label it seronegative RA. At the moment I have undifferentiated inflammatory polyarthritis. This is an umbrella term which covers me at the moment until something else crops up. I am on Plaquenil, Diclofenac and Prednisone which is home mild RA is treated.

Feb 19, 2017 2:55 PM

I've learned that when I get sent on my way with something to try, like new medication or wait and see hoe something develops, I always ask: how long do you want me to try this before I can come back because something isn't working? And if they want to wait and see how something develops: what are you planning to do about it when I come back because the pain isn't resolving itself? I don't want to be negative about a treatmentplan before trying it, but I've noticed that not all doctors take you seriously. They don't know that at the point I'm in their office, I've been waiting and seeiing for quite some time.

Feb 19, 2017 4:15 PM

Peep43 and Lynnes thank you.
I'm hoping that they'll be able to treat the pain I'm having and if possible give me a diagnosis.
The problem I have is that it seems some medications I'm intolerant to or they make me soo tired that they have the opposite effect and make me feel worse so that is one of my main questions I ask and I also say that if after about 4 weeks (that seems to be the time when I'd know if the meds will or won't help) and I'm feeling worse I will stop the meds. If I'm beyond exhausted and struggle to drive I become nonfunctioning and therefore unable to even do the basics

Feb 19, 2017 4:28 PM

Fibro meds like Lyrica take 6 weeks or more to get best feeling from them sometimes.

Feb 19, 2017 4:54 PM

All of the fibro meds I can't take, they all do the same thing to me which leaves me nonfunctioning. I was on pregabline and carbamezapine for nearly 3 months and I couldn't do anything at all and the pain got worse. I was on gabapentine and the same happened and so did it happen with the rest in that family of medications.
My pain clinic nurse says that I'm also intolerant to high doses of meds so it's very hard to a balance 😕

Feb 26, 2017 4:51 AM

Sezzy, I didn't qualify to visit a publicly funded Rheumatologist and my Dr got me assessed via email. The diagnosis was most likely fibromyalgia. I got relief from anti inflammatories and my symptoms didn't entirely fit fibromyalgia. I paid to see a private rhemy and for the whole hour we didn’t discuss fibromyalgia. She told me that I had 2 diagnosis, and that once I had addressed the major one, then the fibromyalgia would calm down. I am starting to feel I little but like a human.again, but very angry that it has taken years of being ignored by my old GP and waiting for appointments to solve my problem. My quality of life could've been better.

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