Confused, need support (long, sorry)

[Guest guest]

Hi everyone,

I received a diagnosis of inflammatory arthritis about a year ago. My Rheum

feels that it is probably not RA (let me know if that precludes me from posting

to this board) or that if it is it is seronegative type. After my initial

consult with her and her review of my test results she felt that although my

bloods were atypical, it was clear from her examination of my joints that I have

significant joint inflammation in many, many joints. Since then she has not

continued to seek a specific diagnosis, preferring to start treating me with

various medications as a priority.

I have previously tried MTX & plaquenil to no effect but we eventually found

that a combination of SLZ and leflunomide made a significant difference.

I have been on various narcotic pain relievers, some at very high doses but

after we found the right DMARDs, weaned myself off of them (by my choice) and

proceeded to have 2-3 very good months where I was able to manage my pain with

heat packs and over the counter pain relief.

A few weeks ago I started having my first flare and, whilst I tried to manage my

pain on my own initially, I am now back to narcotic pain relief (a new kind to

me and much lower dose than I previously needed but still high) and the rheum

has prescribed pred to try and bring things back under control.

After a year long wait I finally got a call from the hospital pain management

unit last week and went in to have all my assessments with them.

Yesterday I had the follow-up meeting, where 10 doctors and other health workers

(physios etc) discuss their findings.

I am now feeling very distressed about their findings and attitude towards me

and I was hoping that someone could help me with some thoughts or experiences.

1) They feel that my Rheum (who by the way is a very well respected and well

known Rheum in my city) has not pursued a definitive diagnosis diligently

enough,they are recommending a new battery of tests, some of which sound quite

daunting.

2) My body responds unusually to narcotic pain meds, requiring much larger doses

than would seem necessary - I agree with this by the way.

3) They seemed to doubt that I have arthritis at all - the physiotherapist asked

my husband (without me present) if he thought maybe my joints were just a bit

sore because I don't exercise enough.

4) They implied that " young women " such as myself are susceptible to addiction

to pain meds, which I understand is a problem but surely the fact that I took

myself off of them previously indicates that I do not have a dependence?! I am

very careful about how I use them and minimise it as much as possible and I told

them this. Plus I have only been having pain relief again for the last week!

5) They recommended psychology and offered a really interesting sounding group

program that I would love to try but will have to wait up to 3 months to access.

6) They think that my latest blood tests show that there may be some white

cell/bone marrow problems and implied that my rheum is prescribing the DMARDs

for no reason, and possibly causing me harm.

7)They noted that I am experiencing depression related to my ongoing pain but

recommended anti-depressants (which I understand can reduce pain) as a first

line of treatment instead of psychologist counselling first.

I left the appointment feeling that I had been treated as a drug addict and a

malingerer with mental health problems that are possibly causing me to feel that

I am in pain but there is nothing physiologically wrong with me.

It took me four years of awful pain to seek help, I was so relieved when my

rheum could feel my joints and knew something was wrong and treated me

accordingly.

I have come home in pain but feel that I have no right to take something to ease

it.

The team are planning to contact my rheum (even tried to while I was there) and

I feel as though I have put her in a bad position.

What is a bone scan and why would they do it? They didn't explain this to me but

indicated that if my bone scan comes out normal then that would prove there is

nothing wrong with me.

Sorry this is so rambling, I am very distressed. I don't know how I would face

going back to being in constant agony with no help.

I'd appreciate any thoughts or advice

Ali

[Guest guest]

Ali,

You are welcome here even if you don't have an RA diagnosis.

I'm sorry you are having such a difficult time. I hope your husband

has been supportive.

It is in your best interest to get a definitive diagnosis, if

possible. An accurate diagnosis would allow you to receive the most

appropriate treatment and monitoring.

A bone scan, depending on the type, can reveal helpful information

about abnormal changes and/or inflammation. Some types are better than

others though.

Not an MD

On Wed, Mar 30, 2011 at 1:39 AM, Alison Aston <astoali@...> wrote:

> Hi everyone,

>

> I received a diagnosis of inflammatory arthritis about a year ago. My Rheum

feels that it is probably not RA (let me know if that precludes me from posting

to this board) or that if it is it is seronegative type. After my initial

consult with her and her review of my test results she felt that although my

bloods were atypical, it was clear from her examination of my joints that I have

significant joint inflammation in many, many joints. Since then she has not

continued to seek a specific diagnosis, preferring to start treating me with

various medications as a priority.

>

> I have previously tried MTX & plaquenil to no effect but we eventually found

that a combination of SLZ and leflunomide made a significant difference.

>

> I have been on various narcotic pain relievers, some at very high doses but

after we found the right DMARDs, weaned myself off of them (by my choice) and

proceeded to have 2-3 very good months where I was able to manage my pain with

heat packs and over the counter pain relief.

>

> A few weeks ago I started having my first flare and, whilst I tried to manage

my pain on my own initially, I am now back to narcotic pain relief (a new kind

to me and much lower dose than I previously needed but still high) and the rheum

has prescribed pred to try and bring things back under control.

>

> After a year long wait I finally got a call from the hospital pain management

unit last week and went in to have all my assessments with them.

>

> Yesterday I had the follow-up meeting, where 10 doctors and other health

workers (physios etc) discuss their findings.

>

> I am now feeling very distressed about their findings and attitude towards me

and I was hoping that someone could help me with some thoughts or experiences.

>

> 1) They feel that my Rheum (who by the way is a very well respected and well

known Rheum in my city) has not pursued a definitive diagnosis diligently

enough,they are recommending a new battery of tests, some of which sound quite

daunting.

>

> 2) My body responds unusually to narcotic pain meds, requiring much larger

doses than would seem necessary - I agree with this by the way.

>

> 3) They seemed to doubt that I have arthritis at all - the physiotherapist

asked my husband (without me present) if he thought maybe my joints were just a

bit sore because I don't exercise enough.

>

> 4) They implied that " young women " such as myself are susceptible to addiction

to pain meds, which I understand is a problem but surely the fact that I took

myself off of them previously indicates that I do not have a dependence?! I am

very careful about how I use them and minimise it as much as possible and I told

them this. Plus I have only been having pain relief again for the last week!

>

> 5) They recommended psychology and offered a really interesting sounding group

program that I would love to try but will have to wait up to 3 months to access.

>

> 6) They think that my latest blood tests show that there may be some white

cell/bone marrow problems and implied that my rheum is prescribing the DMARDs

for no reason, and possibly causing me harm.

>

> 7)They noted that I am experiencing depression related to my ongoing pain but

recommended anti-depressants (which I understand can reduce pain) as a first

line of treatment instead of psychologist counselling first.

>

> I left the appointment feeling that I had been treated as a drug addict and a

malingerer with mental health problems that are possibly causing me to feel that

I am in pain but there is nothing physiologically wrong with me.

>

> It took me four years of awful pain to seek help, I was so relieved when my

rheum could feel my joints and knew something was wrong and treated me

accordingly.

>

> I have come home in pain but feel that I have no right to take something to

ease it.

>

> The team are planning to contact my rheum (even tried to while I was there)

and I feel as though I have put her in a bad position.

>

> What is a bone scan and why would they do it? They didn't explain this to me

but indicated that if my bone scan comes out normal then that would prove there

is nothing wrong with me.

>

> Sorry this is so rambling, I am very distressed. I don't know how I would face

going back to being in constant agony with no help.

>

> I'd appreciate any thoughts or advice

>

> Ali

[Guest guest]

I was diagnosed recently with sero-negative RA. My Rheumy made the diagnosis

based on physical exam and blood work. I am so sorry for your experience. I

have been there on a few things in the past that were physically wrong, that

they attributed to mental health. Please remember, doctors do the best they can,

but they dont have all the answers. A decade ago, it was thought that

Fibromyalgia (sp?) was primarily a mental health issue. Now, of course, they

have found several medicines to help with it and know more about its underlying

causes.

I dont have a lot of advise, but a prayer and a hug. Also, I read recently,

that if you are really low on vitamin D, it can cause you to need way more pain

meds. I think I might have read that on this site. I think it may be worth a

depression medicine if it helps the arthritis, and of course 2000 IU of vitamin

D is always good, especially for women.

Hang in there.

Theresa

>

> Hi everyone,

>

> I received a diagnosis of inflammatory arthritis about a year ago. My Rheum

feels that it is probably not RA (let me know if that precludes me from posting

to this board) or that if it is it is seronegative type. After my initial

consult with her and her review of my test results she felt that although my

bloods were atypical, it was clear from her examination of my joints that I have

significant joint inflammation in many, many joints. Since then she has not

continued to seek a specific diagnosis, preferring to start treating me with

various medications as a priority.

>

> I have previously tried MTX & plaquenil to no effect but we eventually found

that a combination of SLZ and leflunomide made a significant difference.

>

> I have been on various narcotic pain relievers, some at very high doses but

after we found the right DMARDs, weaned myself off of them (by my choice) and

proceeded to have 2-3 very good months where I was able to manage my pain with

heat packs and over the counter pain relief.

>

> A few weeks ago I started having my first flare and, whilst I tried to manage

my pain on my own initially, I am now back to narcotic pain relief (a new kind

to me and much lower dose than I previously needed but still high) and the rheum

has prescribed pred to try and bring things back under control.

>

> After a year long wait I finally got a call from the hospital pain management

unit last week and went in to have all my assessments with them.

>

> Yesterday I had the follow-up meeting, where 10 doctors and other health

workers (physios etc) discuss their findings.

>

> I am now feeling very distressed about their findings and attitude towards me

and I was hoping that someone could help me with some thoughts or experiences.

>

> 1) They feel that my Rheum (who by the way is a very well respected and well

known Rheum in my city) has not pursued a definitive diagnosis diligently

enough,they are recommending a new battery of tests, some of which sound quite

daunting.

>

> 2) My body responds unusually to narcotic pain meds, requiring much larger

doses than would seem necessary - I agree with this by the way.

>

> 3) They seemed to doubt that I have arthritis at all - the physiotherapist

asked my husband (without me present) if he thought maybe my joints were just a

bit sore because I don't exercise enough.

>

> 4) They implied that " young women " such as myself are susceptible to addiction

to pain meds, which I understand is a problem but surely the fact that I took

myself off of them previously indicates that I do not have a dependence?! I am

very careful about how I use them and minimise it as much as possible and I told

them this. Plus I have only been having pain relief again for the last week!

>

> 5) They recommended psychology and offered a really interesting sounding group

program that I would love to try but will have to wait up to 3 months to access.

>

> 6) They think that my latest blood tests show that there may be some white

cell/bone marrow problems and implied that my rheum is prescribing the DMARDs

for no reason, and possibly causing me harm.

>

> 7)They noted that I am experiencing depression related to my ongoing pain but

recommended anti-depressants (which I understand can reduce pain) as a first

line of treatment instead of psychologist counselling first.

>

> I left the appointment feeling that I had been treated as a drug addict and a

malingerer with mental health problems that are possibly causing me to feel that

I am in pain but there is nothing physiologically wrong with me.

>

> It took me four years of awful pain to seek help, I was so relieved when my

rheum could feel my joints and knew something was wrong and treated me

accordingly.

>

> I have come home in pain but feel that I have no right to take something to

ease it.

>

> The team are planning to contact my rheum (even tried to while I was there)

and I feel as though I have put her in a bad position.

>

> What is a bone scan and why would they do it? They didn't explain this to me

but indicated that if my bone scan comes out normal then that would prove there

is nothing wrong with me.

>

> Sorry this is so rambling, I am very distressed. I don't know how I would face

going back to being in constant agony with no help.

>

> I'd appreciate any thoughts or advice

>

> Ali

>