what do i do?

jenzie06

I've previously mentioned on the site that my hubbie and I are planning a family. I've recently come off my amitrip (after 10yrs taking it) and all other drugs apart from low dose steroids.
I'm struggling so so much. Last night I went to bed looking like King Tut with so many supports and my tens machine on. If any 'normal' person was in this much pain then they'd be calling 999!
I just feel like I can't call my rheumy nurse as there is nothing they can do. Its our choice to have a family but its only been 2 weeks off the drugs and I feel like I'm dying. Sorry if thats an overreaction but its the way I feel.
My poor hubbie is worrying about me and I feel totally unsupported by the medical profession. Just don't know where to turn.

wobbly1

jenzie06 wrote:

I've previously mentioned on the site that my hubbie and I are planning a family. I've recently come off my amitrip (after 10yrs taking it) and all other drugs apart from low dose steroids.
I'm struggling so so much. Last night I went to bed looking like King Tut with so many supports and my tens machine on. If any 'normal' person was in this much pain then they'd be calling 999!
I just feel like I can't call my rheumy nurse as there is nothing they can do. Its our choice to have a family but its only been 2 weeks off the drugs and I feel like I'm dying. Sorry if thats an overreaction but its the way I feel.
My poor hubbie is worrying about me and I feel totally unsupported by the medical profession. Just don't know where to turn.

hello
i really feel for you and my heart goes out to you both.
one thought came to my mind is...please ring your rheumy nurse and let her know how you are feeling and what your going through. you are not the first to go through this process and she might be able to give you some advice.
another thought i had was....cant you temp increase your steriods?might help alittle.
sorry i cant help you but please dont suffer...ring the nurse and have a chat...there might be other options she could offer you. please keep in touch and let us know how you are...take care

debatat

I am sorry you are struggling. It must be very difficult. I agree that you should contact the rheumy nurse. She must have nursed other patients in your position. I have lupus as well as RA and on the lupus site people take drugs through their pregnancy including imuran with no ill effects. I think you need more specialist advice, have you rung any helplines? You need to be as well controlled as possible so you enjoy your pregnancy and afterwards. Don't put up with the pain. Let us know how you get on.

Take care

Deb x

sharmaine

Hi
I'm sorry to hear of your suffering and that you are in pain. Please contact your GP or rhemy clinic. They may be able to give you lots of advice and support.

Take care and let us know what they recommend.

Sharmaine

jenzie06 wrote:

I've previously mentioned on the site that my hubbie and I are planning a family. I've recently come off my amitrip (after 10yrs taking it) and all other drugs apart from low dose steroids.
I'm struggling so so much. Last night I went to bed looking like King Tut with so many supports and my tens machine on. If any 'normal' person was in this much pain then they'd be calling 999!
I just feel like I can't call my rheumy nurse as there is nothing they can do. Its our choice to have a family but its only been 2 weeks off the drugs and I feel like I'm dying. Sorry if thats an overreaction but its the way I feel.
My poor hubbie is worrying about me and I feel totally unsupported by the medical profession. Just don't know where to turn.

lindalegs

Jenzie, you must, must ring them. Please don't be suffering like this - there's a whole medical team out there for you to use, they are there to help you - don't struggle on alone. It might only take one phone call from you for relief to be on it's way. As others have said they helped women through their pregnancies before - they're not new to this, you are. You won't get anywhere by keeping quiet - they don't know what you're going through till you tell them. If they can't do anything they'll soon let you know.

Please pick up that phone.

Luv Legs being bossy :shock:

jenzie06

Thanks for your messages. You'll be pleased to know that I rang the rheumy nurse and when the receptionist asked me to leave a message on the answering machine I burst into tears. The flustered receptionist went and found the nurse and I spoke to her straight away. I was very teary but they were very kind and helpful.
After telling me that I couldn't stay on the drugs I was on during pregnancy they've now changed their mind. So I'm really looking forward to a good nights sleep tonight. Plus my GP rang me up within half and hour and was lovely (I've just changed practice and I think I love him, he's so nice).

Next step is to get back on level ground. Its also nice to know that the rheumy people get to hear me when I'm at rock bottom as when I see them I tend to put a brave face on it. Now they've heard me blubbing like a baby!

Thanks for the support everyone.

woodbon

I'm glad your drugs are sorted for you. It can be amazing what showing your feelings can do! I think one of our problems can be 'putting a brave face on' I know I tend to do it and sometimes even as I'm saying it I could kick myself!! :shock: We should show our feelings more! Love Sue

sharmaine

Hi Jenzie
Glad you 'phoned them! So are you back on meds? A good night's rest will do wonders for you!

Take care and hopefully your GP will come up with something so that you can continue to try for your baby without suffering. I wonder if something non-med might help ....acupuncture/hypnosis?? Not sure about any of these as I've never tried either. Maybe someone may come up with some better suggestions.

Warmest regards
Sharmaine

jenzie06 wrote:

Thanks for your messages. You'll be pleased to know that I rang the rheumy nurse and when the receptionist asked me to leave a message on the answering machine I burst into tears. The flustered receptionist went and found the nurse and I spoke to her straight away. I was very teary but they were very kind and helpful.
After telling me that I couldn't stay on the drugs I was on during pregnancy they've now changed their mind. So I'm really looking forward to a good nights sleep tonight. Plus my GP rang me up within half and hour and was lovely (I've just changed practice and I think I love him, he's so nice).

Next step is to get back on level ground. Its also nice to know that the rheumy people get to hear me when I'm at rock bottom as when I see them I tend to put a brave face on it. Now they've heard me blubbing like a baby!

Thanks for the support everyone.

mistywillow

sharmaine wrote:

Hi Jenzie
Glad you 'phoned them! So are you back on meds? A good night's rest will do wonders for you!

Take care and hopefully your GP will come up with something so that you can continue to try for your baby without suffering. I wonder if something non-med might help ....acupuncture/hypnosis?? Not sure about any of these as I've never tried either. Maybe someone may come up with some better suggestions.

Warmest regards
Sharmaine

jenzie06 wrote:

Thanks for your messages. You'll be pleased to know that I rang the rheumy nurse and when the receptionist asked me to leave a message on the answering machine I burst into tears. The flustered receptionist went and found the nurse and I spoke to her straight away. I was very teary but they were very kind and helpful.
After telling me that I couldn't stay on the drugs I was on during pregnancy they've now changed their mind. So I'm really looking forward to a good nights sleep tonight. Plus my GP rang me up within half and hour and was lovely (I've just changed practice and I think I love him, he's so nice).

Next step is to get back on level ground. Its also nice to know that the rheumy people get to hear me when I'm at rock bottom as when I see them I tend to put a brave face on it. Now they've heard me blubbing like a baby!

Thanks for the support everyone.

Hi There
I am so pleased you decided to ask for help. Dont be tempted to 'go it alone' the clinic and nurses etc are there to be supportive so do take advantage of that. I am assuming you have RA and sometimes that goes into remission when you are pregnant. Hope all goes well for you, good luck with your plans and have fun trying!
Gillx

Wonkylegs

HI,

glad you felt ab le to phone your rheumy nurse this time and that they were helpful.

Dont' forget that if you feel like that again but can't get hold of your nurse or don't want to ring her ..... the AC helplines people are really really helpful and they will be able to point you in the direction of help, or help you phrase questions etc before you contact the hospital. They kknow what life is like with arthritis and how frustrating it can be.

hope that helps!