Today, I have been in such agony that by 2pm here I was depressed and crying.
(((hugs))) oh Cordelia I wish you felt better. I wonder if it is your doc that just isn't doing the pain relief. Try shooting a PM to Pammy416...she is from AU also and see what she says about that. Maybe she can help out in some way. Cordelia, I am so sorry you are hurting so badly. I wish they would give you something stronger. Can you go to Hospital and ask for an injection of something. Gosh it does get totally overwhelming! Try to rest some.
AWWW Cordelia if it wasn't illegal and I didn't think I'd adjust to well in jail I would send you some demerol or vicodin. What's wrong with the Dr's over there? Do they think everyone in pain should just tough it out? Thats absurd. Bless your heart, hope your pain eases soon. Cordelia- I wish you werent hurting so much, pain takes over your whole life. We dont get much in the way of pain killers here, Paracetemol or codeine or a jab in the bum with steroids, that about all i'm offered. Sorry the Humira isnt working and those darn infections are a nightmare. I am on my 4th round of antibiotics with this respiratory infection and I feel so ill still,we go away on hoilday in a week and i am dreading going feeling like this. I hope your apointment to the rheumy gives you some relief Take care
I PM'd you. Get back when you can
I'm so sorry that you're in so much pain. I wish there was something I could do.
Cordelia, I hope very much that you are feeling better soon. Well, at least well enough that you can enjoy your date. Have you come right out and asked your rheumy if there is something he could prescribe for pain? And let him know that the pain has taken over your life, that it's difficult to keep up with your child. I still haven't found anything that eliminates the pain, and my doctors do not hesitate to prescribe strong pain meds. But, at least, the pain meds usually keep the it at a tolerable level. You deserve no less than that! Do you have pain management specialists in Australia? If not, then your rheumatologist should give you something that eases it enough that you are not crying from the pain all day. Doctors know that isn't good for you, to be in that much pain. Hope you are well enough to enjoy your dinner date tonight! Be well, Sweetie. Gentle hugs, Nini I do not belong to modern medicine because I do not take it for pain and other problems, a completely different school of though! For over 2 decades, I depend on traditional herbs like wild lingzhi and its complimentary herbs. I have no fear, no worry about the pain and I can predict how to control pain and gradually bring down the disease. Hi Cordelia: I was just checking in to see how you are feeling today? I"m so sorry you are in so much pain. You are such a wonderful support here on the site and have always provided support to me - I wanted to return the favor. I'm thinking about you and sending lots of positive, healing energy and prayers your way. I hope you can find someone to help you get some pain relief. It's so important to be able to function, particularly when you have children! It's not acceptable that you have no relief whatsoever. I hope you can find someone who will support you. Would your GP consider giving you some pain relief meds? Please let us know how it goes. I hope you had a great date last night and a marvelous dinner. I find sometimes, if I can get moving, it's nice to be distracted for a while. I hope you enjoyed each other's company and you are feeling a bit better today. Take care and let us know how you are doing! Hugs, Jen Cordelia, So glad to hear that your pain is a little better although I wish it had gone away completely. Enjoy your dinner and date. Cordelia, I am so glad you had a good time on your evening out. He sounds like a lovely, romantic man. The rose was a very sweet touch. I'm so sorry your pain is back in force. I hope your GP gives you something that will really ease the pain for you. As you know, we all care about you and are anxious to know how your appointment goes. My thoughts are with you, Gentle hugs, Nini So glad your date went so well!
Sorry it's raging again, and I do hope your G.P. will provide you with some help. Wishing you all the best.
I am so happy to hear you had a good time on the date!!! I do hope you see him again. Sorry the pain is back. You are armed with info to take to your GP on pain relief and I am hoping your GP does something to help you out. Let us know how it goes. I'm glad you enjoyed yourself. We all need a break now and then. (Single parents just get less as a general rule.) Not to harp on you but watch the WINE / MTX your liver may not be to happy with the combo. Hi Sweetie: I'm glad to hear you had a great date! I'm also glad you enjoyed my feedback - you really are a great support here. You're always full of positive and encouraging words. That is so important and so valuable. How are you feeling today? I hope you are feeling a bit better and the pain has subsided some. It's a very cloudy day here in the AZ - brings one some humidity and aches, but not too bad. :) I'm getting ready to move out of state soon - so we're packing, packing, packing! I hope this post finds you doing better and that you are your daughter have had a beautiful weekend. Love and hugs, Jen Hi Cordelia: Good luck with the docs. Is it Monday in Australia? I have such a hard time keeping track of time differences. Tee hee. I'm sorry you felt snappy yesterday. I really really understand that. My little one doesn't understand either when I'm feeling icky. It's so hard on them too. :( Sending lots of positive energy your way. Hoping you have a great day! I'll be watching for that update. ;) Hugs, Jen Hope your appointment goes well today. Does Neve go to school yet, I know that some states start at different times. Sorry you had a crappy day yesterday, hopefully today is a start to something better.
YAY!!!!!!!!! You are sure to be much better once the celebrex kicks in and then you will be able to add MS Contin for the 'REAL' pain in a little while. The Celebrex brings down the swelling and really helps with stiffness and some pain. I'm sure you will be feeling like a new person in a few weeks. Its good that Neve is at school and gets to keep busy without you having to keep that up all day. (It will also be cheaper than day care). Glad she is enjoying school. Will keep you in our thoughts and prayers Pam Hi Cordelia- Well I have missed so many posts due to being ill with the infection. Sorry you are still feeling so grotty, it will get better once your meds are sorted. I can understand how you feel about the Humira, I was sick of being sick. I had more doses of antibiotics than Humira for all the infections.They make you feel so ill and on top of RA its not good. I am so pleased your date went well, he does sound like a wonderful man. I have been through months of pain and swelling, it consumes your whole life doesnt it. Its harder for you as you have a little one to look after, mine are older now. I'd jump on a plane and come help if I could but I am thinking of you and hope that your rheumy appointment goes well. I seem to have hit a huge remission for some strange reason, it may be the anti biotics that are helping, this upper respiratory infection is dragging though an now have a bladder infection as well...uggg. Take care and let us know how your appointment goes
Cordelia, I'm so glad that the GP at least has started you on something and I hope it helps you relieve some, if not all, of this pain. Glad the date and the man were so wonderful. I look forward to nights out like that. As you said, being a single parent doesn't give an opportunity for nice dinners like that. And the adult conversation is nice too. I know I enjoy the visits from my brothers and their families because I get a break from running after Isabel and also I get to talk to people about things other than Mickey Mouse and Elmo. I hope you have a good day today. It should be a little easier at least with Neve beinging in school. Have a wonderful day!
RA close to 10 years and the pain has eased from what it used to be. Dietary measures have helped me and when I do flare panadeine, ibuprofen or codeine help plus there is a very good gel for rheumatoid arthritis. Your drs will be able to prescribe these. Change doctors if they arent offering you relief.
Hope things improve for you.
Cordelia, where in Australia do you live? If it's Sydney I can give you the name of my rheumy whose aim is "no pain." Does that sound what you are looking for? Actually, I've had nothing but agressive treatments for RA and various side-effects from both my GP and rheumy. Not cured, but not deep suffering anymore. Cheers, Des.Thanks so much for all your ideas everyone, I will investigate all of them.
I'm on the Sunshine Coast in Qld, Des and there are only three rheumy's on the Coast.
And it does seem to be the culture here more so than overseas, even when I went to hospital as I was so crippled I couldn't do basic self care, I wasn't offered pain relief.
Des, your rheumy sounds like a gem. I would love a 'no pain' rheumy. I have really aggressive RA and they have treated it the opposite way, the least aggressive first. After two and a bit years since dx and having Humira not working on me, I just wish they would get on with it and treat me accordingly, instead of all this wishy washy stuff.
I like my rheumy well enough but I do think he should be taking more bloody action here. I may get a second opinion I think. Just be interesting to hear what another rheumy thinks. Especially since I have a small girl to look after...sometimes I feel like screaming, "Would someone do something please, for ferret's sake!!!!!"
Cordelia, can't help with the Sunshine Coast but definitely seek another opinion. Many surgeries in NSW are working on the "negotiating principle" which means they include the patient in discussing treatments until a compromise is reached. For this to work you need to be fairly up to speed which means doing your own research via Google and the advice offered on this excellent forum. You shouldn't be suffering so much, so get agressive. Oh! Somebody mentioned Tramadol, if you haven't tried it see if your dr. will prescribe for you. it fixes a lot of my pain. Good luck, Des.Yes, one has to be proactive with this disease. I have done a lot of research and lots of reading of other people's posts and experiences and mainly what I draw from it is I don't feel I am being treated aggressively enough in some ways.
Pred does nothing for me, whereas for a lot of people it is a great reliever and I haven't been offered anything else.
So I go to the rheumy next Thursday...as my Humira is not working and I keep getting infections, I will be going armed and asking for what I want like Tramadol etc and if I am not happy I will be seeking another opinion, I may do so anyway.
I was amazed when I first got on this site and started to real about pain relief and wondered if it was just the culture here or was I getting a rotten deal.
I have asked my rheumy and he knows I am a solo parent of a 5 year old. He just says wait til the DMARDS or Biologics work. That is what he has always said. Maybe I am not speaking 'man' clearly enough.
I understand their caution with pain relief but when we are talking this level of pain we deal with, I think that is exactly what the goddamn stuff was invented for.
And I am only asking for a tolerable level of relief. Problem is see I am quite tough and stoic and I think I have just 'toughed it out' up to this point.
And what my rheumy doesn't realise...is how it effects my functioning as a parent. People are even suggesting to me I should be in a nursing home and Neve in care...like hell!!! I am it as far as my girl is concerned. I get no breaks, her father does not take her every second weekend. Nada. I am this kid's rock, world, universe. Luckily I have a couple of great friends who sweep her into their families when necessary but they have small kids too. This isn't just about my pain relief this is about my kid's care. And I am getting quite pissy about how my doctor aren't recognising that. My rheumy's attitude is...you'll cope until the next anti rheumatic kicks in.
My GP does as she was a single parent of three herself.
Yes, we have pain management specialists and on Monday I am hunting one down.
Of course, pain is not good for us and it stresses us out which then has to effect the RA. It's a vicious circle.
I am going to enjoy my date regardless of anything. I rarely go out to dinner and I love it so I will find it joyful whatever my pain level.
Thanks for the gentle hug. I need it.
That is such lovely feedback from you about how my support is helpful. I always hope what I say helps the person but that is so nice to hear it back from someone.
Helping and supporting others really helps me.
And before I braved posting on here I felt very, very isolated and alone with RA. Even the people who understand, don't understand like someone else with it does.
Now I cannot imagine life without you bunch, you have become my online family and friends.
Your feedback made cry, it meant a lot.
Saturday I just as bad as Friday physically. I find too if I get moving it helps sometimes which was why I decided to go on the date anyway.
Date was wonderful. Very impressive man called Dean who I do hope I see again. He did the whole thing in a very impressive way. Brought me a single red rose, picked me up, took me to my favourite restaurant, three course dinner, good conversation, my favourite wine and brought me home. So I had a bloody marvelous evening regardless of the pain I was in and being a poor single mother
Friday and Saturday were hell. A tad less Sunday and again this morning. Of course, when I say less, I mean 7/10 not 15/10, lol.
This is, of course, beside the goddamn point because regardless there should be a plan in place for pain like this.
Yesterday was rough with Neve, I was so snappy and she thinks it is her fault and it's not. I do explain to her but kids of her age still take it on board. Mummy was definitely not fun and we were both tired and she was so bouncy...arghhhhh!!!
My functioning has been stuffed this weekend too, been dropping things, shaking, can't get my hands to do what I want.
Jay thinks he is my goddamn big brother, geez, lol...yes, I will be careful with the wine/mtx but since I have a glass maybe every few months...I figure it will probably be okay and I rarely have more than 2 or 3 at the time too...not a big drinker is I. Thank you for caring.
So let the week begin with both docs on the program and see what sense I can get out of them.
Expect an update.
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