had an appointment at the hospital. I feel like crap but i have failed to tell my doc how im really feeling, the plaquinel im on are not helping. Im in pain the pain killers im on are not helping but doc has said ask my Gp to give me something strong my Gp is crap. Im constantly tired and in pain im at a lost, i actually want to just give up.
confused
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Hi Naz, wondered how long you have been on the plaq? As you prob know it can take ages to kick in... mine did, and in fact still not sure seven months on how effective it is cos I am on steroids too, which have been soo helpful to me.. though trying to reduce again after a flare.... a rollercoaster for sure. I just wanted to send you hugs and encouragement and to ask if the Rheumy could prescribe you a low dose of steroid or something until the plaq has had a chance to work if it is early days?? If it has had a long time to work and nothing then maybe a review of your treatment is due?? Take care and plod on you will get there....
Claire XX
Claire XX
Hello Naz 
It sounds very much like it is time you learnt to tell your specialist how you are feeling (and indeed your GP) :hug: I know that that is not easy to do to begin with.
Most of us were brought up not to complain and that's exactly what we do. Unfortunately it's a very bad idea when it comes to a chronic, sometimes debilitating disease. Doctors see so many patients and they can't instantly "imagine" how you feel. They need telling and they need telling very clearly. Saying "it hurts" is a very vague notion to a doctor... I have found that the most useful thing to do is to describe exactly what that pain is stopping me doing so I give very concrete examples of normal everyday things that most people take for granted.
I'm wondering if the problem with your GP is the same or if you may simply need to look into seeing another GP. Sometimes that is even possible within the same practice and having a chat to the practice manager can help there. I know some members here who have seen a huge change in their care simply by doing that. If that's not possible then you need to see if you can find a new GP.
It is definitely not normal to be feeling as bad as you do. Whether it is from pure pain or pain and depression (which is a recognised and important part of the disease for many people), it needs to be treated. You deserve and can obtain a far better quality of life.
You'll guess from all I've said that you absolutely can't afford to give up. You need to stand and fight and get the care you deserve!
Here's some strengthening hugs to help you along,
:grouphug2:
Katharine
It sounds very much like it is time you learnt to tell your specialist how you are feeling (and indeed your GP) :hug: I know that that is not easy to do to begin with.
Most of us were brought up not to complain and that's exactly what we do. Unfortunately it's a very bad idea when it comes to a chronic, sometimes debilitating disease. Doctors see so many patients and they can't instantly "imagine" how you feel. They need telling and they need telling very clearly. Saying "it hurts" is a very vague notion to a doctor... I have found that the most useful thing to do is to describe exactly what that pain is stopping me doing so I give very concrete examples of normal everyday things that most people take for granted.
I'm wondering if the problem with your GP is the same or if you may simply need to look into seeing another GP. Sometimes that is even possible within the same practice and having a chat to the practice manager can help there. I know some members here who have seen a huge change in their care simply by doing that. If that's not possible then you need to see if you can find a new GP.
It is definitely not normal to be feeling as bad as you do. Whether it is from pure pain or pain and depression (which is a recognised and important part of the disease for many people), it needs to be treated. You deserve and can obtain a far better quality of life.
You'll guess from all I've said that you absolutely can't afford to give up. You need to stand and fight and get the care you deserve!
Here's some strengthening hugs to help you along,
:grouphug2:
Katharine
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4,369 Posts
Hi Naz,
I'm sorry that you are feeling so low at the moment! Long term pain and painkillers that arnt doing enough is enough to make anyone feel down!
Perhaps its time to be a little more outgoing with for feeling and level of pain to your GP...most GPs/Specialists/Physio Therapists work on scales 1-10. 10 being highest level and 1 the lowest. If you can relate to them what level of pain you are in daily and any fluctuations then that may help them take you more seriously. There are many types of painkillers and anti-inflammatories that may well help give your the releif you need. Prenisolone is a steroid and it can also give some emergency relief to pain and inflammation..its is normal to jsut be put on a short course to help get things under control.
If this does not work, then phone your specialists secretary and tell them that you did not relate all your problems to the specialist. Also tell them that your GP is not supporting you fully in your healthcare. Advise the secretary that you are in need of an alternative medication to alleviate all the pain you are suffering and can your specialist see you again or prescribe a different med without an appointment.
Good luck!
I'm sorry that you are feeling so low at the moment! Long term pain and painkillers that arnt doing enough is enough to make anyone feel down!
Perhaps its time to be a little more outgoing with for feeling and level of pain to your GP...most GPs/Specialists/Physio Therapists work on scales 1-10. 10 being highest level and 1 the lowest. If you can relate to them what level of pain you are in daily and any fluctuations then that may help them take you more seriously. There are many types of painkillers and anti-inflammatories that may well help give your the releif you need. Prenisolone is a steroid and it can also give some emergency relief to pain and inflammation..its is normal to jsut be put on a short course to help get things under control.
If this does not work, then phone your specialists secretary and tell them that you did not relate all your problems to the specialist. Also tell them that your GP is not supporting you fully in your healthcare. Advise the secretary that you are in need of an alternative medication to alleviate all the pain you are suffering and can your specialist see you again or prescribe a different med without an appointment.
Good luck!
rhanks for your support guy. I could not start metraxate as i have a infection so they will monitor my bloods for a bit. Im not sure if anyone else has this problem but i feel im lossing my memory. I have forgot all my pins which i use for work alarms and equipment which is so unsall as all my pins are the same and have used it for years. Second is i foe some reason have forgot how to spell the simplist words. And find when i speak my words muddle up. Does that make sense.
I know the feeling but that is really not an answer, right? How long have you been on the plaquenil now? It maybe that you have not been on it long enough or that you are not a high enough dose depending on what you are taking now.
As for the gp, let him know that the rhuemy is leaving the pain management to him and that what you are on now is not working so you need something else to try untill you find something that works. Sometimes gp's just don't know what they are to do for lupus patients and once they are told that they have to handle the pain part of it then they start working on getting it under control. Be firm with the doctor and let him know that he has to do something. They can't help you if they don't know about it so always tell both doctors about what it going on with the other one. New meds, physical therapies that might be tried, etc..
I hope this helps you and if you need someone to talk to just drop me a line would be glad to listen and/or advise in anyway.
As for the gp, let him know that the rhuemy is leaving the pain management to him and that what you are on now is not working so you need something else to try untill you find something that works. Sometimes gp's just don't know what they are to do for lupus patients and once they are told that they have to handle the pain part of it then they start working on getting it under control. Be firm with the doctor and let him know that he has to do something. They can't help you if they don't know about it so always tell both doctors about what it going on with the other one. New meds, physical therapies that might be tried, etc..
I hope this helps you and if you need someone to talk to just drop me a line would be glad to listen and/or advise in anyway.
Naz most of us understand your memory loss issue. I find the more out of control the disease is, the worse it is. Hopefully your infection can be cleared up so you can start on the Methotrexate.
If you are not happy with your GP you should change to another. It is very important for you to have a good relationship with your doctor.
Take care,
Lazylegs
If you are not happy with your GP you should change to another. It is very important for you to have a good relationship with your doctor.
Take care,
Lazylegs
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1,999 Posts
Hi Naz,
I am also sorry you are having so many problems with your doctors and communicating.
What I did when I needed to find a new physician, was to take a paper and make two columns. On one side, write down what you need from a doctor. On the other, write down what you will bring to a doctor. This is such as keeping appointments, coming prepared with your "love notes" of what is happening with your health and life issues.
Then, if you like the GP you have been seeing, I would call or make an appt and go thru all this. If he works with you, then you have your answer. If he gets all defensive, and justifying his actions, you have your answer that you need a new GP. If you aren't happy with him, then I would make a few calls and interview the doctor you are considering, on the phone. If he/she is not willing to help you, then you keep looking on. This method helped me find the rheumy I have been with for 16 years now. He was a bit surprised that I was interviewing him, but also was pleased that I had taken the time to identify my needs and the needs of a doctor.
I've been on methotrexate for 17 years. It has been the saving drug for me as I can't handle high doses of prednisone. So, if you have questions about it, ask away. I've probably gone thru all the side effects it can throw at one. It has been the drug that has kept me alive thru all these years.
Stay well, take care. I hope that some of the suggestions from myself and others will work for you.
Sally
I am also sorry you are having so many problems with your doctors and communicating.
What I did when I needed to find a new physician, was to take a paper and make two columns. On one side, write down what you need from a doctor. On the other, write down what you will bring to a doctor. This is such as keeping appointments, coming prepared with your "love notes" of what is happening with your health and life issues.
Then, if you like the GP you have been seeing, I would call or make an appt and go thru all this. If he works with you, then you have your answer. If he gets all defensive, and justifying his actions, you have your answer that you need a new GP. If you aren't happy with him, then I would make a few calls and interview the doctor you are considering, on the phone. If he/she is not willing to help you, then you keep looking on. This method helped me find the rheumy I have been with for 16 years now. He was a bit surprised that I was interviewing him, but also was pleased that I had taken the time to identify my needs and the needs of a doctor.
I've been on methotrexate for 17 years. It has been the saving drug for me as I can't handle high doses of prednisone. So, if you have questions about it, ask away. I've probably gone thru all the side effects it can throw at one. It has been the drug that has kept me alive thru all these years.
Stay well, take care. I hope that some of the suggestions from myself and others will work for you.
Sally
thanks i think problem with my Gp he never believed in lupus, it's like when i need flu jobs he gives it to me but while he moans. From what i found out the less medication a gp prescribes the more money is given to the gp and some sort of a award. My uncle is also a gp and he always say my gp is no good. But hopefully im going to him next week if he does not give me stronger pain killers im changing gp.
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1,999 Posts
Hi Naz,
While this may not work with this GP, it may give you something to think about with your rheumy or new GP.
Several years back, I found myself resenting the feelings I had when asking for pain medications. I also disliked that I felt I had to "beggar" myself to justify my need for them. I am allergic to just about every pain medication other than demerol.
After thinking about this, I approached my pcp/pulmonologist with this option. He would be the ONLY doctor on my team who would write narcotic pain meds, and the other doctors would be off the hook. This way it kept ALL my pain scripts in one place and one doctor would be managing it. He agreed, bless his heart. It has worked very well for us, and my other doctors were happy with this arrangement.
A couple years after he and I had struck this arrangement, the AMA came out with this very recommendation. I highly recommend it to anyone who is seeing multiple doctors and having a need for narcotic pain meds.
Sally
While this may not work with this GP, it may give you something to think about with your rheumy or new GP.
Several years back, I found myself resenting the feelings I had when asking for pain medications. I also disliked that I felt I had to "beggar" myself to justify my need for them. I am allergic to just about every pain medication other than demerol.
After thinking about this, I approached my pcp/pulmonologist with this option. He would be the ONLY doctor on my team who would write narcotic pain meds, and the other doctors would be off the hook. This way it kept ALL my pain scripts in one place and one doctor would be managing it. He agreed, bless his heart. It has worked very well for us, and my other doctors were happy with this arrangement.
A couple years after he and I had struck this arrangement, the AMA came out with this very recommendation. I highly recommend it to anyone who is seeing multiple doctors and having a need for narcotic pain meds.
Sally
Dear Naz
Dont give up, I feelt he same and they have taken away my steroids as well
Try and focus on something positive in your life if you can
Please dont give up
Thinking of you with every symplathy and empathy I ahve
Think as I keep telling myself, IT WILL GET BETTER< IT HAS TO !
Pam
Dont give up, I feelt he same and they have taken away my steroids as well
Try and focus on something positive in your life if you can
Please dont give up
Thinking of you with every symplathy and empathy I ahve
Think as I keep telling myself, IT WILL GET BETTER< IT HAS TO !
Pam
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