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Discussion Starter · #1 ·
Hi Ladies,
I have had a really terrible week this week and its still going on.
Last weeekend my pain started to escalate. I had an even worse headache, my eyes were more sore than they have ever been, my back arms and legs were in agony. Monday and Tuesday i was crying in pain and desperate.
this is after talking 400 mg tramadol with 600 mg paracetamol, i also am already on plaquenil and also an nsaid called arcoxia 90mg.
I was so desperate by Wednesday that it thought i might lose my mind with the pain. I phoned my gp and he has given me some liquid morphine (oramorph) to use when things get really unbearable. This did help take the edge off but i am finding it really hard to believe that i can be taking this level of painkillers and actually still feel pain.
I would be interested tohear from any one else.
I haven't been taking regular doses of the morphine just to top up wth when things are really bad.
Am still in a lot of pain my hands are terrible swollen purple and red and blue. I can hardly grip properly.
OOOOHHHHHHH!!
I am still waiting to go back to the rheumy.
I am also due to have a general anaeshthetic next Friday to have 3 tooth roots removed and to have a biopsy on some oral luekoplasia that i have, but know i am actually wondering if i feel this bad whether i should actually have it.
I think i will phone my gp on Monday and see what he recommends.
I just hope i feel better soon. :sad:

Cassie
 

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Hi Cassie,

Sorry to hear how in pain you are!

Only a suggestion, but perhaps a sort course of Predisolone would be more helpful!

Try phoning the Specialist via the secretary to tell them how bad things are and see what they suggest. They should be able to give some advice by phone. Remember to tell them about the dental surgery.

Unless your GP is a Lupus specialist I'm not sure that the best medical info will be provided as regards to your medications. You really do need to get a message to your specialist!

When I'm really bad I have found that my specialist does react to a phone call and lets me and my GP know the next best thing to do!

Lots of hugs!

Lesley
 

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Discussion Starter · #3 ·
Hi Lesley,
Thanks.
I am still stuck in limbo in terms of a rheumy, am still waiting to be seen again and i know that the rheumy who has been in ttouch with my gp said no steroids at the moment, she wants to see me first!!! Well that would be good if they would actually send me a appointment.
Yes i need to go back to gp and see if he cab get hold of her again. Actually i might try to ring the hospital myself tomorrow aswell.

Cassie
 

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Hi Cassie,

Do phone the hospital yourself! At least you can can get your point across to the secretary first hand about how bad your quality of life is due to all this pain!

Perhaps the specialist will change his mind with treatment and see you earlier - I will keep fingers crossed!

Love Lesley
 

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Hi Cad,

Sorry to hear about all the pain you are experiencing. I'm in a similar situation tying to deal with pericarditis. I'm on a high dose of prednisone (80 mg), but I still had to get extra pain medication. I was taking 18 mg hydromorphone contin and regular hydromorphone for breakthrough pain. Now I've had to go back to the Fentanyl patch (100 mg) with the breakthrough medication. I highly recommend the patch for management of the pain. You just change it every 3 days and the pain doesn't get out of control because you are always being "fed" the meds.

I was supposed to have dental work this week as well. I checked with my dentist and he thought I would be fine. I decided to wait though because I didn't want to take the chance of adding more stress to my body. I just got out of the hospital thought too, so I'm not that strong getting around yet.

I would check with the dentist, but follow you gut. Either way, I think it is very important to get the pain under control. It took me a long time to accept this. I always wanted to 'tough it out'. Not anymore.

Sorry if I'm rambling or not being overly helpful :). Good luck and sending you positive vibes.

Nutty
 

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Dental work does not sound like a good idea just now.I really hope you can get your pain sorted out. Remember regular meds are the best way to do this, in other words control the pain don't chase it!
Sending you a lot of sympathy!!!!!!
X Lola
 

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((((((((CAD)))))))) Unremitting pain is so difficult to bear. It gets into your sleep and you find there's no place to get away from it. Exhausting! Yes, I can imagine being in very bad pain even with a big variety of pain meds. Not much helped me until I was put on a schedule of pain meds -- four daily doses of Neurontin for the nerve component and three doses of 30 mg time release morphine (ms contin). I still have pain. But most of the time it's manageable. I am able to have some quality of life. You have to get ahead of the pain because playing catch-up is just impossible.

I agree that prednisone might help you. A steroid shot is what I always need to stop the build up of pain I sometimes get.

If you can find a pain clinic or doctor, make an appointment and go. As for the dental work, the general anesthesia might be the very thing to stop the pain cycle. It would turn everything off bigtime for a while and that might work. I have a friend who, when her pain reaches an out of control level, goes to the ER and gets a huge shot of demerol or dilaudid. Puts her in bed for the day, but breaks the cycle and lets her get back to normal levels of pain.

Ultimately, we all have to find what works best for us individually. I have found that some bad days call for a dark, cool room and a towel over my eyes. Other bad days, I need to be distracted. I go for coffee with a friend or sew or .... something.

I wish I could stop the pain and make you feel like a healthy person. Or tell you some magic formula. Believe me, if I knew how to "fix" chronic and extreme pain I would -- for everybody on earth. And I'd do it for free. All I can do is tell you I've been there and will be there again -- just a matter of time. And I do feel your pain and I wish the very best for you.

Hugs,
Sunny
 

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Discussion Starter · #8 ·
Hi All,
yes sunny you are right, its about trying to find ways to cope as best you can day to day. It very hard for me as i 5 kids, so nt muc time to focus on me. Just have to try to muddle on. My hubby is good though and does help me!!

I spoke with my gp and he said he is not really happy for me to have the general and the op, but that it would be really useful to try to do the biopsy.
He's going to phone the consultant and i'm waiting for them to get back to me to let me know if i can still go in and just have the biopsy with a local anaesthetic.

I also phoned and spoke to rheumatology secretary and explained how i have been, she was actually quite sympathetic and said ahe would leave a message for the rheumatologist, so am just waiting to see if they are going to come back to me.

Thanks foir the support ladies

Take care All

Cassie
 
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