Hi Frances. I am so sorry you are dealing with this. I was recently diagnosed so I am no expert by any sense. But, I live in the Pacific Northwest so I deal with the rainy, dreary weather a lot. Question... what is your vitamin D level? I also deal with SAD (seasonal affective disorder) and when that hits I am tired, lethargic and deal with borderline depression. I find a "Happy Light" helps with light therapy. Look that up - they sell them at Costco here. Yeah, we in the Northwest don't get much sun in this season so we resort to artificial light. You might want to ask your doctor to do a Vitamin D check especially since your winter has been so dreary. I hope you get some answers soon.
Thanks Just Me. I do have my vit D levels checked regularly and take a prescription Vitamin D. I appreciate all your suggestions and for taking the time to respond. So, how are you doing being recently diagnosed?
Just Me said:
Hi Frances. I am so sorry you are dealing with this. I was recently diagnosed so I am no expert by any sense. But, I live in the Pacific Northwest so I deal with the rainy, dreary weather a lot. Question... what is your vitamin D level? I also deal with SAD (seasonal affective disorder) and when that hits I am tired, lethargic and deal with borderline depression. I find a "Happy Light" helps with light therapy. Look that up - they sell them at Costco here. Yeah, we in the Northwest don't get much sun in this season so we resort to artificial light. You might want to ask your doctor to do a Vitamin D check especially since your winter has been so dreary. I hope you get some answers soon.
Thinking of you, Frances, cuddling your kitty. You know this will pass … but when? Look after yourself as best you can. I think you need to phone your girlfriends!
Yes I agree I need to chat with my girlfriends! I've been e-mailing and texting them. Had to cancel a lunch date with one friend. For some reason mentally I'm feeling much better even though this is my 5th day in bed. Doesn't make sense, but I'll take it ! Thanks for checking in with me Seenie - it really does help.
Seenie said:
Thinking of you, Frances, cuddling your kitty. You know this will pass ... but when? Look after yourself as best you can. I think you need to phone your girlfriends!
They are expecting snow here tonight 3-6 inches. I'm sure that weather change isn't going to help. On the flip side, work might be cancelled, or they may allow unscheduled telework which will help me.
Seenie said:
Thinking of you, Frances, cuddling your kitty. You know this will pass ... but when? Look after yourself as best you can. I think you need to phone your girlfriends!
Thanks to everyone's prompting and a great guide dandlyons sent on how to talk to your doc about fatigue, I feel empowered and committed to talk firmly with my doc on April 1st about my fatigue problem. I never pushed it in the past because it isn't pain, but as you all have pointed out, it is debilitating at times and at best it's still affecting my quality of life. So, I feel I have right to complain/discuss it with my rheumy and press for a solution.
Thank you everyone for giving me the perspective and push I need !
warmly,
Frances
Yes! That’s the stuff, Frances.
But where is the “how to talk to your doctor” guide that dandlyons sent? I must be missing something.
Can’t believe you are getting snow again … isn’t it almost cherry blossom season?
Frances said:
Thanks to everyone’s prompting and a great guide dandlyons sent on how to talk to your doc about fatigue, I feel empowered and committed to talk firmly with my doc on April 1st about my fatigue problem. I never pushed it in the past because it isn’t pain, but as you all have pointed out, it is debilitating at times and at best it’s still affecting my quality of life. So, I feel I have right to complain/discuss it with my rheumy and press for a solution.
Thank you everyone for giving me the perspective and push I need !
warmly,
Frances
Here's the article Dandlyons sent about how to talk to your doc about fatigue:
http://www.hss.edu/conditions_fatigue-and-inflammatory-arthritis.asp
If I'm not feeling much better tomorrow, I'm calling the doc office and request/demand I get an appointment this week.
Seenie said:
Yes! That's the stuff, Frances.
But where is the "how to talk to your doctor" guide that dandlyons sent? I must be missing something.
Can't believe you are getting snow again ... isn't it almost cherry blossom season?
Frances said:Thanks to everyone's prompting and a great guide dandlyons sent on how to talk to your doc about fatigue, I feel empowered and committed to talk firmly with my doc on April 1st about my fatigue problem. I never pushed it in the past because it isn't pain, but as you all have pointed out, it is debilitating at times and at best it's still affecting my quality of life. So, I feel I have right to complain/discuss it with my rheumy and press for a solution.
Thank you everyone for giving me the perspective and push I need !
warmly,
Frances
That’s a good article, Frances.
And I agree with you about calling your family doc. It’ll be April 1 in no time if you’re feeling well, but it’s a long long haul if you’re feeling like you are now.
Frances said:
Here’s the article Dandlyons sent about how to talk to your doc about fatigue:
http://www.hss.edu/conditions_fatigue-and-inflammatory-arthritis.asp
If I’m not feeling much better tomorrow, I’m calling the doc office and request/demand I get an appointment this week.
Seenie said:Yes! That’s the stuff, Frances.
But where is the “how to talk to your doctor” guide that dandlyons sent? I must be missing something.
Can’t believe you are getting snow again … isn’t it almost cherry blossom season?
Frances said:Thanks to everyone’s prompting and a great guide dandlyons sent on how to talk to your doc about fatigue, I feel empowered and committed to talk firmly with my doc on April 1st about my fatigue problem. I never pushed it in the past because it isn’t pain, but as you all have pointed out, it is debilitating at times and at best it’s still affecting my quality of life. So, I feel I have right to complain/discuss it with my rheumy and press for a solution.
Thank you everyone for giving me the perspective and push I need !
warmly,
Frances
I'm going to call my rheumy not my GP for an app't this week. And I'm bringing my 78-year old Mother who has been taking care of me to explain to him what she saw/sees: how weak and fatigued I am and that she had to take care of me ! And how this has happened before.
Frances said:
I'm going to call my rheumy not my GP for an app't this week. And I'm bringing my 78-year old Mother who has been taking care of me to explain to him what she saw/sees: how weak and fatigued I am and that she had to take care of me ! And how this has happened before. Sometimes, I think it sinks in more if a doc hears it from a third party,
My mom is 74 and could run circles around me! I'm glad you'll have an advocate with you.
Frances said:
I'm going to call my rheumy not my GP for an app't this week. And I'm bringing my 78-year old Mother who has been taking care of me to explain to him what she saw/sees: how weak and fatigued I am and that she had to take care of me ! And how this has happened before.
Frances, I hope you wake up on day 6 with more energy and the supportive vibes of all of us rooting for you.
Glad you will be seeing a doc this week about this! Good luck and know we are rooting for you Frances!
Day 6: I'm still not a 100% and seem to be getting only incrementally better each day. Fortunately the Federal Government in DC is closed because of snow today, so I don't have to worry about work. I did try to get a rheumy appointment and the one office was closed because of snow and the other office didn't answer. I did leave a message on the treatment line hoping my rheumy will call me today - hey, if he's not at work he has time to make lots of calls. Actually he's been very good about returning my calls and discussing my concerns at length on the phone. It was unusual that he had an assistant call me back the other day. However, shortly after that discussion, I went downstairs and when I returned to my bedroom, I realized I had a missed call from a restricted number - I'm sure it was him.
Frances-maybe it's time for a medication review or some labs. Unfortunately I have been there and I didn't think that I would ever feel better. Changing to remicaide has really helped with my fatigue-not saying this is the answer for you-but don't give up. I thank God for my kitties and for my husband who waits on me when I am unable to get out of bed.
I decided I can't take it anymore. I'm not much better than 6 days ago and need to get back to work. So, I decided to do my own prednisone burst.
I started today with 25 mg. Any suggestions on how I should complete my burst? 25 mg x 2 days 20mg x2 days 15mg x 2 days etc. Or is this a faster burst I can do?
I was on Remicade and it helped with my fatigue only once for about 10 days. After an infusion I would sleep 18 hours the next day and it wasn't helping my fatigue so I recently switched to Enbrel. I'm also taking plaquenil and was on 5mg or prednisone a day. Neither were helping. Until today I was down to 2.5 mg prednisone with no changes. I agree a change needs to be made. Perhaps increasing my Enbrel dose?
jhelvey said:
Frances-maybe it's time for a medication review or some labs. Unfortunately I have been there and I didn't think that I would ever feel better. Changing to remicaide has really helped with my fatigue-not saying this is the answer for you-but don't give up. I thank God for my kitties and for my husband who waits on me when I am unable to get out of bed.
Enough is enough Frances. Get a referral or ask for a referral or start making some phone calls. You have switched meds several times now with little or no results in fact this is the worst you have sounded in a long while. I understand you aree getting hit hard, and you are working hard at fighting this thing.
Its not likely your answer is in a pill bottle although you certainly need better disease control. If you recall I warned you this exact thing was a possibility to happen with Plaquenil.
So about that referral. An over simplified way to put this is your brain needs a "ctrl-alt-delete" reset. Long tern inflammation can do that to your adrenals. You need to get into a Cognitive Behavioral Therapy program that is integrated both Pain Management and Physical therapy. I know George Washington University has a huge program, but don't know if its totally appropriate. They are doing a lot of this work with Vets right now so I know its available in your area.
This is not going to get better on its own or a med change. You are fighting a multiheaded monster.
I agree something needs to change, but I don't have pain just fatigue so I'm not sure how cognitive behavior will help and I did just complete 6 weeks of P.T.
tntlamb said:
Enough is enough Frances. Get a referral or ask for a referral or start making some phone calls. You have switched meds several times now with little or no results in fact this is the worst you have sounded in a long while. I understand you aree getting hit hard, and you are working hard at fighting this thing.
Its not likely your answer is in a pill bottle although you certainly need better disease control. If you recall I warned you this exact thing was a possibility to happen with Plaquenil.
So about that referral. An over simplified way to put this is your brain needs a "ctrl-alt-delete" reset. Long tern inflammation can do that to your adrenals. You need to get into a Cognitive Behavioral Therapy program that is integrated both Pain Management and Physical therapy. I know George Washington University has a huge program, but don't know if its totally appropriate. They are doing a lot of this work with Vets right now so I know its available in your area.
This is not going to get better on its own or a med change. You are fighting a multiheaded monster.