Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group sorry to bother you!

Sorry to be a nuisance as I know I havent replied to many posts but I feel that as I havent been dx yet its difficult but I do read many of them most days.
I wanted to ask advice,When I first started with problems 16yrs ago I had a lot of pain in my lower back/legs ect but then it seemed to gradually move up my spine and last 3yrs have had pain in shoulders/upper back/neck.I have had nerve conduction results which said problems are not from carpel tunnel (which I knew really!)and I am seeing Rheumy next week to review.But over last month or so I have had a lot of lower back pain right above coccyx bone.This week it has been especially bad affecting my legs and right foot under my heel.When I went to Lanzarote recently it was not so bad,maybe because I wasnt working,I know work does play me up but not ready to give up yet!
What I wanted to ask is what should I be saying to Rheumy bearing in mind last time he would only talk about problems in my neck ect.Also this pain above coccyx is it SI joints?
Jill

Hi Jill

Pleased to meet you - I see you are in the UK as well. I have only recently been diagnosed ay the age of 57, so don't give up

Please don't think you are bothering anyone, from my experiences on this site people are more than ready to advise and help you.

Sorry, I can't answer your question but I am sure that someone will be able to help you.



Carol

Hi Jill!
You have every right to ask all the questions you need to your Rheumy! That's their job. Perhaps if you make a list, and pull it out to ask everything, and make wure you get to ask, and have answered satisfactorily, everything you need!
Sometimes it might be helpful to take someone with you, to give you courage to ask.
As for the low back pain, that's where a lot of this AS stuff is in women, anyways, and doesn't always show up on x-rays, esp. if not fused. Unfortunately, x-rays don't show pain!!
And I'm not sure what kind of work you do, but stress, be it mental, emotional or physical, can all play a big factor in pain. Nor does there have to ba any rhyme or reason for it, it just is.
I'm sure more knowledgable people will reply to this, and arm you with info to take to your rheumy!
Don't give up, some doctors are better than others, so if you have a choice to get a second or third opinion, go for it!
Laura

Hi Jill
Welcome to the forum

Sorry I don't have anythingelse to add to Laura's great answer.
I agree with all she said, especially "making a list" part. Take a small note in your bag and write down your questions whenever you come up with one.

Best luck with your appointment with doctor next week... Take care

Jasmine

Thanks for reply.We have been having nice spring like weather here in UK havent we .When I was away I thought it was the heat that was helping but I think the main thing was I wasnt working and over doing it!
Jill

Hi,Thanks for reply.I took a list with me when I saw him last time but he said I would rather you told me so I told him I had been for xray on my neck and doctor said it showed cervical ribs,artheritic changes and cervical spondylitis.I wanted to tell him the problems i had in the past but he said he wanted to send me for nerve conduction tests first so I was a bit frustrated.
I am a Relief Warden which means I visit elderly people in their homes to check if they are OK which I enjoy but also the down side is I have to do the cleaning duties in the communal areas.This week I have had a busy week and have found it hard to keep going.




Jill

Thanks,I have all these questions in my head but my mind seems to go blank when I get there! One thing I remember about last time is said I had been dx with Fibro yrs ago that he would discuss that after nerve cond.tests so I hope he doesnt just fob me off as I know Fibro is bad enough but I am sure ther is more to it.Doctor seems to think so anyway!
Jill

Hi Jill!

I liked Laura's answer too
The only thing I would like to add and forgive me if I seem a bit annoyed (BECAUSE I AM!), what kind of doctor won't let you read your list??? It sounds to me like he is rushing you I have had many experiences with many doctors in my 27 going on 28yrs with this disease and the ones I stick with have been the doctors who will LISTEN!! It's bad enough that we as women have a hard enough time getting diagnosed and taken seriously, we don't need to be brushed off as well. I have changed doctors for that very reason in the past. I even stopped seeing them for years. I was fortunate that I had an Internist whom I respected that wouldn't give up looking for the Rheumy that would actually listen/help/diagnose. I hope you will persist in getting his attention and if he won't listen then I would find a new one ASAP. It doesn't appear that he is even looking at AS as a possible diagnosis so why waste time? The stories that are, or come close to the IAIYH (it's all in your head) syndrome really get me going SNORT!

I hope you get some answers soon Jill and please never feel that you are bothering anyone here. We are all here to listen and hopefully help in some way. Stay stubborn and keep fighting for those answers, don't give up!

peace
Kathy


"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."

Hi,thanks for reply sorry I made you see red! My doctor has been very good it was the Rheumy that made me a bit cross,but he did examine my neck and do lots of prodding ect it was just the fact that he didnt seem to want to listen to my history,every time I talked about something different than what was related to my neck/shoulders he would steer conversation back to numbness/pain ect in my hands/arms!My doctor over the years has sent me for lots of tests,specialists ect especially in the early days.When I was told I had Fibro I excepted it for many years and hardly ever went to the doctor because I just thought oh its all down to Fibromyalgia but these last 3yrs I knew pains were more than muscle pain.

Jill

Fibro's a garbage diagnosis they give to annoying females. Never, ever admit to any doctor you have had a fibro diagnosis in the past if they don't ask. Fibro is considered by some doctors to be a psychological problem based solely on bad brain chemistry. Throw it out, get rid of it. Don't mention it to the rheumatologist, make him listen all your symptoms and draw his own conclusions.
Make your list and take it with you with a notepad and pen. If he is dumb enough to keep changing the subject, take the pen and write down on the pad what he just said and say it out loud as you write it, as in, "okay, I asked Dr. about my legs and he won't look at them but wants to look at my neck." Doctors are trained to save time by guiding the conversation towards what they want to hear. You just sit there and keep at them until they either cooperate or get a different doctor, because it's no use paying them to ignore you. They would love this to be a neck problem because then they can ignore the lower back. Sometimes it is the neck vertebrae causing the leg problems and sometimes it isn't. The other thing you can do is get your real (er, primary, regular doctor) to tell you what to say, as in," I have been sent here by Dr. Goodguy because he thinks there is something wrong with my LOWER BACK and he said to tell you that my legs are hurting."
You have to be really a lot more agressive than you expect to be.