Advice on getting diagnosis please

KateP

Hi, I'm new to this so please bear with me!!! I am currently having a really bad pain day and decided it was time to join a support group. I am 44, I've had pain in my joints for as long as I can remember. My current diagnosis is OA in multiple joints and inflammatory arthritis in my hips. I've had left hip arthroscopy and right hip replacement , I've had weekly , (yes weekly) steroid injections in my hips, and just three weeks ago I had the tendon cut in my right hip. I have severe OA in my spine and I have now been told I need an arthroscopy on my shoulder . I have been under a rheumatologist for a while but my Gp has asked me to get a second opinion which is booked for 09th sept. what I don't understand is why all my joints keep producing fluid. My osteo surgeon says something is causing the attack on my joints and he too suggests a second opinion. My current rheumatologist also says I have chronic pain disorder but my gp and surgeon do not agree. I don't really care what label they give me but I really would like some medication that actually helps!! I'm currently on 90mg arcoxia a day , pregablin and cocodamol , my blood tests are still high with regard to inflammation and
As I say the pain and tiredness is really taking its toll . I still work 09am -2pm but come home exhausted and my life seems to be getting smaller and smaller. Has anyone else had difficulty getting diagnosed and can you offer any advice. ? Thank you

dreamdaisy

Hello, it's lovely to meet you and I hope we can help with information and support. Having said that I am beyond tired but I will try to do my best on that front.

I too have a foot in both arthritic camps, I began with an auto-immune version and the joint damage from that has led to OA in a number of joints. You say that you have an inflammatory arthritis in your hips - how was this diagnosed? Are you having steroid injections into your new hip too? And why was that tendon cut - was there summat up with the new joint? And weekly ones to boot? I ask because, despite being a member on here for a while, I haven't come across this before. I have a history of non-effective steroids injections in my knees but they were strictly rationed. I also took oral steroids for three years. Are you having regular bloods which show raised inflammation markers?

From my inexpert point of view something with you is not adding up but, as I said, I am tired. I'll look in again tomorrow; in the meantime I wish you well. DD

Boomer13

Dear Kate;

Hi it's nice to meet you but I'm sorry to hear you are having such a terrible time.

I also was stuck between several doctors, none of which agreed with each other. It's an extremely anxious time isn't it? Plus all of the pain.....So sorry you are in that situation.

All I can say is hang in there and wait for your second rheum opinion. Sounds like you definitely need another rheum's thoughts on your case.
I'm assuming your bloodwork has been unrevealing? Mine was too. After seven years I just received a diagnosis in the last two months.

At least your osteo and your GP agree you need a second rheum opinion.

Best of luck. ((()))
Anna

dreamdaisy

I remember spending a year being bounced between orthopaedics and rheumatology (ortho because my left knee was over two feet in curcumference with swelling plus solidified swelling) and rheumatology because ortho thought I was their pigeon. Rheumatology initially turned me away but guess whose gang I belong to now? DD

KateP

Thank you for your replies , the inflammatory
Arthritis in hips was diagnosed by rheumy
From the athroscopy done 4 yrs ago, the
Synovium fluid in both hips is persistent
And causes bursitis , he did the weekly
Injections for a couple of months to try and
Reduce the lesions but then just gave me
Morphine patches which I won't use as
Despite working on the pain I just sleep all the
Time !! The tendon was cut again due to the
Constant pain and fluid build up, when the
Surgeon went in to do that he spent 3 hrs
Cutting away scar tissue which he says has
Formed after hip replacement and constant
Inflammation!! My blood work was last done
About 3 yrs ago , gp has done routine bloods
Which he says shows inflammation , . My fingers
Are hurting too much to write any more but
Hope that answered your questions. Thank you
For reassuring me that it took you 7 yrs
To get diagnosed , there is hope eyh !!

KateP

Sorry forgot to say that I did have oral steroids but only for a week , steroid injections in shoulder a month ago and also injections in big toe. They work but only for about 3 days so I've said no more!!!! Have a good day

dreamdaisy

Morphine is strong stuff, it doesn't take the pain away from you, it takes you away from the pain. You have been, and are going through, the mill, I am so sorry. Please keep in touch, there is usually someone around to listen and reply and if we can help in any way we will. DD

PS I know what you mean about steroids, three days of feeling slightly better was it. I preferred the oral sort, I took those for three years and then spent a year weaning myself off them.

barbara12

Hello Kate and a warm welcome from me
I have OA in multiple joints and just had my first hip replaced, must say I dont like the sound of the fluid build up in your joints...you sound like you have a good GP sending you for a second opinion...my old GP wouldn't let me have one... :roll: a long story...
Has for the hip injection I only had 3 over a couple of years...every week must be awful for you.
I do hope you get some answers when you go back, and please let us know how you get on...
We are always here if you want to rant or just have a chat..x

trepolpen

dont understand what is going on but agree you need a second rheum opinion.

KateP

Thank you all for replying ! Well I've struggled through work this morning and feel awful coz I just don't have the energy to walk the dog !!! Gonna have a sleep and hope I wake up feeling better ! Is it normal to continue having this much pain?? I thought the arcoxia would reduce the inflammation !! If I do get a different diagnosis from rheumy are there different medications that take the pain away or is this something I should learn to live with all the time. Also can anyone tell me what the difference is between OA and inflammatory arthritis. I don't have a positive reumatoid factor but is inflammatory arthritis another type? Have tried google but it tends to give results for RA .thanks

dreamdaisy

OA is poorly described as the 'wear and tear' arthritis and is caused by the deterioration of the cartilage in joints - inflammation may also be present. An auto-immune arthritis is one caused by the immune system over-reacting to some stimulus and that triggers the body to attack itself by producing excess inflammation within the joint or joints. The drugs for an auto-immune version work by suppressing the immune system in an effort to stop it firing up. The meds for OA are primarily the pain dullers and perhaps an anti-inflammatory.

There are two basic forms of an auto-immune arthritis, if rheumatoid factor is positive in one's blood then RA is the usual diagnosis (a sero-positive) but there are sero-negative types of which I have one. My inflammatory markers were always sky-high, for years I was termed an 'inflammatory arthritic' but when my skin helpfully obliged with a bout of psoriasis my label was altered to psoriatic arhritis. Nothing else changed.

I have taken three sorts of anti-inflammatory medication over the years but I wouldn't term any of them as being particularly helpful with pain relief. Adjusting to the constant pain and discomfort is one of our biggest challenges when living with arthritis. The inflammation may be reducing but the pain will remain thanks to the damage within the joint - even minimal damage will cause pain. DD

PS I hope you can put your feet up for at least an hour now, you need the rest.

trepolpen

hi Kate , RA dont affect our hips , nor does it affect our backs but does most other joints & can attack our eyes & major organs like lungs & heart

if your inflammatory markers are up (CRP & ESR) then they should be giving you something to control it , there is 200 differnt types of arthritis , although you can get both RA & OA I think the chances are its the same thing attacking all your joints

those pain patches , you can change them to something else which you get on with better so would talk to your GP & ask him to change the patches

KateP

Wow, thank you DD, why couldn't the " proffesionals " explain that to me like that! So I guess my gp is thinking along the lines of sero-negative. All I seem to be told at the hospital is that I am a mystery!!! I don't have any rash but think I may draw one on next time to see if that helps get a diagnosis, ( am joking ). I have an auto immune disease that caused problems with my thyroid by I take thyroxine so I assume that stops it ? Any how nothing I can do right now so rest time it is. Enjoy the rest of your day and thank you again , you really have helped .

dreamdaisy

You're more than welcome, this is what the forum is for. I read trepolpen's comment that RA won't affect one's hips but I know of two with RA, one of whom has new hips and the other who is waiting for a replacement. Everyone's disease is different in how it affects them.

GPs are not experts in auto-immune arthritis, but a rheumatologist should aknowledge the differences between the postives and negatives. I was always 'lucky' in that my inflammation markers were high (between 160 and 170 at their best ) so they proved there was something going on. DD

trepolpen

dreamdaisy wrote:

You're more than welcome, this is what the forum is for. I read trepolpen's comment that RA won't affect one's hips but I know of two with RA, one of whom has new hips and the other who is waiting for a replacement. Everyone's disease is different in how it affects them.

GPs are not experts in auto-immune arthritis, but a rheumatologist should aknowledge the differences between the postives and negatives. I was always 'lucky' in that my inflammation markers were high (between 160 and 170 at their best ) so they proved there was something going on. DD

its because you can get RA & OA , I have it myself & with severe RA you end up walking bad & puts pressure on hips etc , just ask a Rheumatologist & they will tell you

totaly agree about GP's & most know very little about auto-immune arthritis

dreamdaisy

That's a fair point well made, trepolpen, I too have OA in my PsA affected joints thanks to the damage that's caused. Isn't it fun? DD

bubbadog

Hi, Kate, firstly welcome to Arthritis care! You've done the right thing coming here. We look out for each other and advice or support where we can. It took a very long time for me to be diagnosed and several different consultants. But now I'm diagnosed we're trying to find the best medication to help me. I'm currently on 50mg of M.S.T (slow release morphine) and would eventually like to be off it as I've been on Morphine for a good 10yrs now different doses. I've been called an enigma by my Rhummy Dr! I don't know whether to take it as a compliment!!