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my neck has gone to pieces - it's so sore where the skull attaches to my spine on both sides - i'm frightened and me and hubby are splitting up because he doesn't believe me that i have ra and keeps saying i am just run down. i am so gutted right now.

i've been shivery and warm and ill all day i cannot take any more of this

I am sorry to hear about that, Julie.

I wish you could find a good RD that will help you with finding out just what is wrong with you.

I hope things get a lil better, soon.

Julie, That is so sad about your marriage. I was thinking about something Cristene told me. She went to see a shrink to have him evaluate if she was "crazy" and making up her symptoms. That evaluation is what made her be able to get the doctors to listen to her and finally get her ra diagnosis. It would not hurt for you and hubby to go to counseling too. Brett and I have already gone to counseling for issues we were having difficulty resolving. It can work. I hope something turns around for you soon. Roxy - my doctor sent a phsyciatric doctor to my house to see me and she said there was without doubt nothing wrong with my mind and that under the circumstances she would feel worse than me! I give up with David - my neck is so sore today - david wont believe that i have ra even though i have all the symptoms, because i don't have swelling he won't believe it - even the strong positive anti ccp he wont believe - or the rf test, nothing i don't have the energy to fight everyone anymore. My mum and dad said that they though i was going mad and that i was imagining my symptoms and that they hadn't realised it was the other way round - i said 'well i good clue would have been me telling you it was the othe way round, i said, i am anxious and depressed because i am physically ill, i am NOT physically ill because i am anxious and depressed' but no one listens. David now believes, because that stupid rd told him, that i just have this because i am run down. well i don't smoke or drink, i eat millions of fruit and veg and fish, take supplements, drink green tea, etc if i get this from being run down then how come half the population isn't crawling on their hands any knees - i am so so angry right now - why will he not believe an anti ccp test!!!
Hi Julie,

First before I type out a response to you, I want to make it clear that in no way am I trying to be mean, I just have a suggestion for you.

A while back you said that a doctor suggested you start taking plaquenil but you said you wanted to start out with something stronger. I just don't understand why you won't start taking the plaquenil if you believe (and want your family to believe) that you have RA.   It just might help you and if not then you go back to that same doctor to see if you can add methotrexate...and if that doesn't help then go onto something else until they can get this under control.

Right now you are not taking anything..correct? You're in a lot of pain and a doctor has suggested to start with plaquenil but you won't take it. Maybe that could be why your family is thinking that you are imagining your symptoms?? You won't even do what the doctor suggested. I'm sure my husband and family would be wondering what was wrong with me if I refused to do anything that was suggested by the doctor to help my situation.

I would really like to see you feel better, Julie. I know it's not fun to be in this kind of pain. So why not start by taking the plaquenil and forget about going for something stronger...give it a try and go from there.

Kelly

Good suggestion Kelly. I did not realize you had not started the plaquenil Julie. It was the first med they put me on. No side effects whatsoever. Julie - Plaquinel is usually the first thing they put you on, it takes months before it kicks in so the longer you delay the longer the discomfort and pain etc.   MTHX is usually the next stage in combination with Plaquinel. My Rheumatologist wanted to combine the two straightaway but I opted for the Plaquinel first and I had relief after a few months, I have now added MTHX and the occasional Naproxen.     You want to stop the disease progressing rapidly and my doctor told me that the side affects of not taking the medication outway the side affects of taking it.   I am not happy with taking so much medication but after reading all the postings here over the past months it is reassurring to know that the medications do work for the majority of people even though I am aware that things change and people move on to different medications but you HAVE TO START ON SOMETHING, unfortunately the pain doesn't go away on it's own. Start the ball rolling now cos there's a waiting game attached to this disease just merely waiting to see a Rheumatologist. About 6 to 9 months in Canada!!! Good luck. GillMy doctor who diagnosed the ra told me not to take the plaquinel (which was withdrawn from prescription at my doctors office when i tried to get it) he said it was an inapropriate treatment and that i should seek treatment on NHS which i am waiting for an appointment for.

The doctor who prescribed the plaquinel - who i phoned to try and get it from again said that because my bone scan came back clear, he would not prescribe it for me because he does not believe it will help.

I have tried to take it and have asked for it again.

It's now been recognised that the best way to treat ra is with combination drugs from the start because it has now been discovered that the step up approach is not effective and the step down approach has been adopted as this also has the ablitiy is some cases to push ra into drug induced remission if treatment of combination therary begins early enough. Hopefully i'll get this when i see the new rd.

Personally, i don't want to waste any time on one drug which has brought no long term relief to anyone as far as i gather so far, everyone has had to add drugs to it because it doesn't work. The treatment now is to combine and the beginning - its proving more effective, i suppose everyone is different. Obviously my confidence in a rd who has told me he is 100% sure i do not have ra, is wavering a bit if he prescribes me with a dmard and says it will help immediatley with the pain because it is a pain killer.   Obviously it's not. I have no problem taking medication, i just want to be satisfied that i am taking the best and most appropriate meds for me, and at the time, i wasn't happy about the rd's advice. i don't want to find out months down the line that if i'd only took blah blah blah it could have been different, that's why i am hanging fire until i see a rd who will both dx me and work out a treatment plan with me.

Sounds intelligent to me. It's so hard to know. I sure hope you can find a doctor you can trust to know what they are doing for all of the reasons you give. The whole thing is so complex and med opinion seems to keep changing. Diagnosis can be so difficult. It took me years to find an rd who really helped me because I am sero neg.

As it turned out the rd I finally went to who is so good is a former student of mine. As I said on another post she was smarter than I then and smarter than I am now.
Another thought Julie -- I've found that my pain and fatigue don't all come from the same problem and one med doesn't take care of all of it. Different meds target different problems before you can get relief. It was a long time before I realized that and its been a process of eliminating one problem after another to make things better. Then sometimes I had to deal with the problems caused by side effects etc. It really takes time and there is no magic bullet.Tiana - thanks, I know i probably sound nuts to a lot of people but it's just a case of getting the right rd, i just can't trust people blindly when they give me any reasons not to. Hopefully i'll have some luck soon, it's frustrating.

Ps, it takes a really smart person to admit that someone else is smarter than them
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