I'm a mystery!

magenta

Hello,
Not been feeling great for ages and haven't had the energy to post much. Just wanted to update you all on my probs. I went to hospital on Tuesday to see about my jaw surgery only to be told they're not going to do it. Dr never even looked at my xrays (I have OA in jaw) and he told me the pain was all muscular. He's now referred me back to Dental Hospital where I was initially seen last year-the same people that couldn't do anything for me :? Back to square one with that one!
Next was my rhuemy appointment. They've discharged me. They told me I'm a mystery, they don't know what's wrong with me :shock: They don't think I have arthritis or fibro and I'm very confused and angry. The only good thing that came from the appointment was that they've referred me to a pain clinic.
Nerve test next-(mentioned on another post) been waiting for 6mths for an appointment. Got a letter today from the hospital and I thought it was my appointment but no! Only a letter saying they are reviewing their waiting list and do I still want the appointment :x Don't know what to do now. Everyone keeps telling me to complain but I don't have the energy anymore. Thanks for reading this, I feel better getting it all out!
Magenta xx

skezier

Hi Magenta,

When you see the pain clinic ask them for their ideas on what is wrong as they sometimes seem to know more that the doctors. The pain is there for a reason and what your being told just doesn't make sense.

Can you get a second opinion with a different hospital when you have got your head round this one, you must be so disappointed.

A (((( )))) and a hope that one day they will do something for you to actually find out whats wrong and treat it.

Love

Cris xx

suziev

hello

i feel like scream on your behalf! it's awful when you feel like your getting nowhere fast.
all i can say is change hospitals, go somewhere else and keep shouting.
good luck
suzie

minky67

hi magenta,i too have the OA in my jaw,dx after an ear infection.3 lots of treatment later & a different gp he says its OA & mention it to my rhmy on nx appiontment(which i did)
he's now refered me to pain clinic.
my gp has been more than useless on this,ive told him the pain im getting in my ears is waking me up & i scream with the pain at night.
'yes' he says 'its all coming from your jaw' but theres nothing more he can give me as he says im on max painkillers & to let pain clinic sort out my meds :shock: he upped my amptripyline to 50 mg.

so i do know how you feel.
im really hoping the pain clinic are good as this is all getting me down sooo much,i dont look forward to waking up for more pain each day.
take care & i hope you get something sorted very soon.
luv debs

woodbon

HI, I am so sorry, Magenta. You've really been round in compleate circle and are back at the begining again! Its no wonder you feel down and depressed, I know I do sometimes, when I'm frustrated, but you've got so much to be frustrated about.

If I were you, I'd go to the pain clinic. I've been, and they have changed my tramadol to slow release, only 2 doses a day, the same overall dose but just 2 tabs to take and they really do keep the pain more level. Less side effects too, although I didn't have much after a couple of spaced out days. They have also referred me to a special spinal physio, who I will see on 6th oct. They have more time to explain things to you and they are less interested in making a diagnosis as in treating the pain, they are also much better at listening, I found. I felt more of a whole person being treated than a carpel tunnel, or a back pain. That was my experience, I now that they are all different and it depends on how good the staff are and what sort of relaitionship you build up with them. Try and see it as a positive move.

If you have pain you must have a problem, whatever is causing it. I think that sometimes it is hard for them to see just what the problem is. I've just been reading a medical paper about the possilbility of new treatments for OA. Reading that made me realise just how hard it is for them to see very small changes that cause huge pain. But rheummys are looking at it now, which is very good for future patients.

Take care, keep all your appointments, including the nerve test, and keep going to see them. Don't give up if you still have a problem.

Take care, love Sue

lindalegs

Hi Magenta,

I feel so sorry for you as you seem to have been putting up with alot of cr*p for such a long time now and you must feel so frustrated

Another thought has crossed my mind though, do you suppose you could have ME (Myalgic Encephalopathy) as this often mimics arthritis and is very hard to diagnose? The main symptoms are chronic fatigue, joint and muscle pain and feeliing very low with none of the deformities of arthritis - I know I have no medical training but I'm clutching at straws trying to help. :shock:

I hope you get some satisfaction from the pain clinic.

Luv Legs XX

debatat

Hi Magenta, sorry you have been messed around so much. I have heard good things about the pain clinic, so they may well be able to help you.

Don't give up though, you will get the answer in the end. I know it must be frustrating and disheartening. Do you keep a symptom diary? pain, fever, rashes etc? Sometimes it helps.


Sending you a cyber hug to cheer you up.

Deb x

magenta

Hello,
Thanks everyone for your kind messages. I'm looking forward to the pain clinic (bizarre?) but no doubt I'll have to wait months for that too. I'm writing a pain diary to take with me. I worry about what they can do for me pain control wise cos I drive, work and have 2 small children. I can see me taking paracetamol for the rest of my life. I'm feeling a bit better today, ready to start fighting my corner again. I won't stop till I get answers.
Thanks again,
love Magenta x

valval

that the way u will get there do not let them get u down the answers r out there and u will find them u have pain for a reason so u will find answer just stick with it and do not let them fob u off

maria09

Poor you!
Good luck at pain clinic
Hope everything goes well
M

alicea

magenta wrote:

Hello,
Not been feeling great for ages and haven't had the energy to post much. Just wanted to update you all on my probs. I went to hospital on Tuesday to see about my jaw surgery only to be told they're not going to do it. Dr never even looked at my xrays (I have OA in jaw) and he told me the pain was all muscular. He's now referred me back to Dental Hospital where I was initially seen last year-the same people that couldn't do anything for me :? Back to square one with that one!
Next was my rhuemy appointment. They've discharged me. They told me I'm a mystery, they don't know what's wrong with me :shock: They don't think I have arthritis or fibro and I'm very confused and angry. The only good thing that came from the appointment was that they've referred me to a pain clinic.
Nerve test next-(mentioned on another post) been waiting for 6mths for an appointment. Got a letter today from the hospital and I thought it was my appointment but no! Only a letter saying they are reviewing their waiting list and do I still want the appointment :x Don't know what to do now. Everyone keeps telling me to complain but I don't have the energy anymore. Thanks for reading this, I feel better getting it all out!
Magenta xx

Hi Magenta sorry to read your not having any help , I have not been posting to has i have been feeling so down and in pain . we have the same things going on i am no nearer with my voice and my jaw and ears are driving me mad , i to am going to the pain clinic on the 15th oct . they did a scan and my neck and it s not the joint in my throat and they are not sure what it is . i really do feel for you it drives you mad and they dont seem to see how much pain we are in . all the best sandra

woodbon

Hi, If you've just seen an odd post of mine here, I'm sorry, in a senior moment I posted my new thread onto your old one, Magenta, I think I've totally lost it now appologies to any poor confused readers! :oops: Love Sue

frogmorton

Hi Magenta
You know I am disgusted at the way you have been treated
I wish there was something I could do to help. Has the sero-neg label still been attached to you?
I am glad you have the pain clinic to come. My ex m-in-law is finally going back to the GP and I have suggetsed she gets referred to one down here.
Good luck girl and try to get those reserves of anergy back to continue the battle.
Love
Toni x

magenta

Hi all,
The drs don't seem to know what's wrong with me at all so I've now got a big question mark next to my diagnosis!! I've still to take the Etodolac, co-dydramol and up my Amitryptilline to 50mg at night-hence I'm confused. If they don't think I have arthritis or fibro, why the anti-inflamms? :?
I've got a really sore back just now which is why they've told me to get physio. It started in the base of my spine, sore and stiff in the morning and progressively worsens throughout the day. Dr's said it was muscular but the pain now has moved to both my hips. The sharp pain 'circles' around my hip area (where your pants fit-if that makes sense?) and is bad at my bony bit at my pelvis. Doesn't sound like muscular to me but I'm writing everything down in the hope someone will be able to tell me what it is.
Hope everyone had a good weekend, it was a holiday weekend in Glasgow. Don't know about everywhere else?
Bye for now,

Magenta xxx