Never been so nervous......

Felpaterson

Well, I have my 1st rhumatology appointment tomorrow at 1045 at the hospital. I have never been so nervous, I feel sick and so anxious about it. I feel I have been waiting all my life for this appointment. I feel it can go one of two ways, I come out utterly disappointed and no better off or I come out feeling like everything I am experianceing is actually happening and I'm not making it up and I am put on the correct medication for all my pains.

I am so scared that the consultant is going to tell me that they don't think it is RA and that I will need or come back in another 6 months. I need to go onto the correct medication so badly and I'm so scared this won't happen.

If you have any further information you think I should go in with please let me know, I need t ge the most out of this as I have been with 6 months for this day and I am hoping after tomorrow I will maybe be on the road to a pain free (as much as possible) future!!

Any advice is so greatly appreciated.

Felicity

Xxx

valval

first take some one with you as it hard to remember what is said normaly would tell you to keep a apin diary but it bit late for that but write a list of where you are getting trouble and remember to tell them how it is affecting your quality of life good luck val

arfaitis

You have nothing to worry about, just relax and ask as many questions you like, if you feel you might forget something, do as I do, sit down and make a list.
You will be weighed, have your BP taken and maybe a blood test, you will be examined on a couch/bed, they will move your limbs to their capicity to see how much movement you have.
They wont tell you that you haven't arthritis, you must have it to get an appointment, it shows up in blood tests, but they will try to ascertain what type you have, and treatment, they may refer you to a specialist physiotherapist and give you hot wax hand baths if you have hand and wrist problems.
Honestly you will be fine, and probably finish up with new meds.
Good luck keep us posted to how you get on.

dreamdaisy

Daft words alert: don't let the nerves get the better of you. I agree with Val, take someone with you for moral support and another pair of ears, take your list and just hand it over for them to read, answer questions without waffle, base your answers on your roughest days so they begin to appreciate how tough things are, and remember we will be there with you in spirit. I doubt I'll be around tomorrow but I hope to look in at some point to read an update. Good luck. DD

Felpaterson

Hello unfortunately my husband is offshore and I have no one else that could come with me so I am going alone. I do feel with me being on steroids, and a lot of painkillers that I might be more able tomorrow than I sometimes am!? Should I base all my pains and things I can not do on a bad day!? My bloods have all come back Negative, this is what is making me feel down and negative about my appointment. I have written a list but not much as writing is very hard for me and bloody painfull. So I have bullet pointed everything.

Not keen on banging weighed put on nearly a stone in 6 months from taking my steroids

Do you really think I will leave on different medication!? I have red so much about methotrexate and I really hope to come off these steroids, I hate these steroids, they used to work but they don't any more.


Xx

dreamdaisy

We're many things between us but fortune tellers? Nope. They will be aware that the weight gain is steroid-based but put that on your list any way. Does your mobile record? Could you 'tape' the session? When I have rheumatology appointments I don't take any pain relief so they get a more accurate feedback on what hurts and how much. I now remember reading that your OH is offshore - I do apologise for forgetting that salient fact. :oops: I don't know what to suggest - if I lived round the corner I'd come with you! DD

frogmorton

Felicity

I know exactly how you feel beacuse I felt exactly the same for my first appointment. I was convinced they woudln't help me (My bloods were and still are always negative).

HOWEVER I was wrong - they were so kind - my story and what they coudl still see was enough to convince them. Yes i was weighed, but they aren't looking for what you weight rather increases/decreases after treatment i think. BP and Xrays of my chest.

Remember to write down waht you want to ask and what you are told.

All will be well I am sure

Love luck and hugs

Toni xxx

Felpaterson

dreamdaisy wrote:

I now remember reading that your OH is offshore - I do apologise for forgetting that salient fact. :oops: DD

No worries at all! he's home the away and the home and away again haha!! I find it hard to keep up with him sometimes haha!

I don't have a recorder on my phone but I will take a now pad and try and write down as much as possible.

With regards to the steroid side effects, the shaking and weight gain etc, will I tell him about that too!? God I feel sick to my stomach. I hope this all works out. Do I tell him that I don't think the pain killers work and that I would like to start on neuro meds I.e gabapentin. Or do I leave him to tell me what I should be taking!?

Felpaterson

frogmorton wrote:

Felicity

I know exactly how you feel beacuse I felt exactly the same for my first appointment. I was convinced they woudln't help me (My bloods were and still are always negative).

HOWEVER I was wrong - they were so kind - my story and what they coudl still see was enough to convince them. Yes i was weighed, but they aren't looking for what you weight rather increases/decreases after treatment i think. BP and Xrays of my chest.

Remember to write down waht you want to ask and what you are told.

All will be well I am sure

Love luck and hugs

Toni xxx

Toni, what medication are you on and what type or artheritus do you have!? Did u get started on your meds at your 1st appointment? even though your bloods were negative did they ever question your pains!? I'm so worried that even though I know how much pain I am in, I'm concerned that they won't see it or believe me.

har13y

ive got to have an op its not that bad it just sounds bad dont worrie about it

Felpaterson

har13y wrote:

ive got to have an op its not that bad it just sounds bad dont worrie about it

I'm sorry to hear you have an opp, sorry my complaint sounds pathetic compared to your health, sorry x

dibdab

Hi there,

You've had lots of good advice so I just want to encourage you if I can. My bloods have always come back negative but the rheumy listened to my symptoms and what he could see, and I came away with a dmard. Over the last 6 years we've tried several drugs and combinations of drugs, it takes a while to get the combination that has most effect, and many of us have stories to tell. Once you're in the system the rheumy nurses are great at listening and sharing information. Like the others said I always take a list of symptoms, how often and how they affect my life and hand it to the rheumy. I also take a list of questions and hold on to it to prompt me- don't be afraid to ask again if they say something you don't understand. I was initially diagnosed with Palindromic Rheumatism- even my gp didn't know what it was!!!! It has since morphed into full blown RA.

Hope all goes well with your appointment- let us know how it goes.

Deb x

stickywicket

I just want to echo what others have said. Keep calm :roll: , take your time in there, just tell it like it is, remember to listen as well talk. And, if you're afraid you won't describe the pain accurately, as DD said, leave off the paindullers. You'll soon remember how it feels You'll be fine. Don't forget to let us know how it went.

Susiesoo

Hi - I can't add anything to all this advice so just want to say good luck tomorrow and I will be thinking of you. Do let us know how it goes.

With best wishes, Susie

hileena111

Hi Felicity
If you have no one to go with you take a little tape recorder thingey.
You will probably not take in everything he says...thats why my hubby comes....2nd pair of ears but if you can tape it you can check.
Def. sit down and make a list...base it on your worse day not the best one...make the most of the appointment. Think of everything to write down. I find the things I write down they sometimes answer without me asking so thats a help. Most of them are used to me coming in with a list and just laugh at me
Sorry this is late but good luck
Love
Hileena

Felpaterson

hileena111 wrote:

Hi Felicity
If you have no one to go with you take a little tape recorder thingey.
You will probably not take in everything he says...thats why my hubby comes....2nd pair of ears but if you can tape it you can check.
Def. sit down and make a list...base it on your worse day not the best one...make the most of the appointment. Think of everything to write down. I find the things I write down they sometimes answer without me asking so thats a help. Most of them are used to me coming in with a list and just laugh at me
Sorry this is late but good luck
Love
Hileena

Thank you so much for all the replies

I guess I'm mostly concerned about not saying the key words they will be looking for to diagnose correctly. I am very flexible and as I said, I did gymnastics for 10 years, the pain started once I stopped gymnastics. Bt I am still able to put my foot behind my head, but then I cant lift my right arm above my head some days!?
How would you explain your pains!? I'm struggling for key words instead of babbling on and on.

dreamdaisy

Hells bells girl, I can't lift either foot above the opposite knee. As for describing it, well, my pain is similar to toothache within the affected joints. A pain that hurts but nothing can touch, and that includes the dullers. They smudge the sharper edges, no more. DD

PS I once told a neighbour that the pain was similar to toothache - go see a dentist she replied. Yup, she paid that much attention to an answer given in response to her query.

stickywicket

Personally, I think if I aimed for 'key words' I'd get it all wrong. I just try to go in and be honest with them. It works for me.

Felpaterson

dreamdaisy wrote:

Hells bells girl, I can't lift either foot above the opposite knee. As for describing it, well, my pain is similar to toothache within the affected joints. A pain that hurts but nothing can touch, and that includes the dullers. They smudge the sharper edges, no more. DD

PS I once told a neighbour that the pain was similar to toothache - go see a dentist she replied. Yup, she paid that much attention to an answer given in response to her query.

Haha!! Yes tooth ache is a good description. I feel that is a good description of the pain in my hands, hips, ellbows and feet. But the pain in my shoulder that has been there for a few months now, is like that of a knife that is permanently in there, but at night and 1st thing in the morning the knife is being turned. I have often fiund myself wishing i had my arm chopped off ( dramatic i know but bloody hell, i can only take so much) The pain killers actually do nothing to me right now for my shoulder. Tramafdol, codine, naproxin, steroids, nothing!! I do not see how they do not work!!!?

Felpaterson

stickywicket wrote:

Personally, I think if I aimed for 'key words' I'd get it all wrong. I just try to go in and be honest with them. It works for me.

Thank you I think I'm over analysing it now, god I wish it was over! Then I can relax, if I drank I would have a glass of wine!

salamander

Hi Fel, My results are always negative since I've been on steroids but it hasn't affected my diagnosis or the treatment I'm having. They take that into account.

Best of luck tomorrow.Hope it goes well for you.

tillytop

Hello Fel

Belatedly - really, really hope your appt goes well today. I will be thinking of you.

Tillyxxx

dreamdaisy

Good luck, I am thinking of you. DD

har13y

Felpaterson wrote:

har13y wrote:

ive got to have an op its not that bad it just sounds bad dont worrie about it

I'm sorry to hear you have an opp, sorry my complaint sounds pathetic compared to your health, sorry x

well its not really an op but ive got to have injections in every joint fingers, nee, ankles and jaw but im gona be nocked out.

Felpaterson

Update --


Ok, so I am back from the hospital and I have been diagnosed with hyper mobility & fibromyalgia. The consultant doesn't want to rule out RA but is treating me with amitriptyline. Continuing on my Tramafdol, naproxin and tapering off steroids.

Nt even sure what all this is but I have all my life to work that out. He has told me that it is a chronic condition that won't go away but can be managed. I am not 100% sure about the diagnosis as it doesn't not explain the joint pains I get and the redness I get in my joints, but when I stop the steroids and see him again in 4 months I am sure I will update him should my condition change! I do not think this is the end for me, and I an quite sure further diagnoses will be give further down the road.

If you have any info on this conditions I would love to hear what u have to say, and thank you so much for all your help xx

julie47

Hi felpaterson

I just wanted to welcome you to the forum

I am glad your appointment went well after your anxieties.

I don't know anything about hyper mobility and only know about fibro from my friend. I just know that she struggles with fatigue and pain and swelling in her legs. I know also she takes 25mg amytrip which she says does help.

I have Ra, I just wanted to wish you well
Love Juliepf x