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Old 09-23-2009, 07:36 AM   #1
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cmjohnson2007 HB User
So tired of being tired....

Hi All,
I am hoping to get some suggestions. Since the birth of my son almost 3 years ago, I feel like I have been in a non stop flare. Right now I am in so much pain and I feel just totally exhausted. Last year this time, it was the same thing. I actually went on short term disability for 4 monthsfrom my job. Every part of my body hurts and I was prescribed the fentanyl patch and Oxycotin. But I was sick and could not keep anything down for days because of them so I don't take it anymore. I was on steroids, but the Rheumy took me off because he said that it was really not doing anything so there was no point. I just don't know where else to turn. My last visit to the Rheumatologist he said that my blood tests were still high but they had not changed since I saw him last, so just see him in 3 months. I am on 250 mg of Imuran a day, and I am scared of any of the other drugs, but I cry everyday because I feel so bad. Should I get a 2nd opinion? Does anyone start feeling worse when the weather changes like this (I am in the northeast)? I feel like I am not going to make it.

 
Old 09-23-2009, 07:17 PM   #2
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Join Date: Jun 2009
Location: Brielle, NJ
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heidiclouser HB User
Re: So tired of being tired....

Cm....I think it is time for a second opinion. Imuran is a potent drug and generally a last effort not a first. Living in the northeast you should have access to good doctors.

I'm flaring right now and getting off the couch takes all my energy so I know how you feel. We learn that it will pass and better days are ahead.

So hang in there. Post when ever you feel bad...we're here to listen and we do understand.

 
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Old 09-24-2009, 09:08 AM   #3
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: So tired of being tired....

Hi. I'm so sorry you've been having a terrible time of it, and for such a long stretch. Was there ever a time you had your lupus in better control?

Did you ever take Plaquenil? I *think* even people who require stronger treatment sometimes may take it in addition to the stronger meds. (But that's for a REAL DR. to explain, of course.)

Just curious: do you have copies of the bloodwork values your rheumie said were "still high"?

This summer was my worst prolonged period of pain in many years. (I'm closeby.)

It's true: you have a ton of drs. on your doorstep, including rheumies affiliated with well-known teaching hospitals. Honestly, if I'd tried the meds you've taken yet gotten no relief, I'd want someone else to take a shot at helping me. And I'd want literally everything revisited. For example, is there any anemia exacerbating your fatigue? Is your pain 100% joint/connective tissue related, or could you have (for example) something like myositis (muscle inflammation) as well? Etc. (Those are only examples of questions, meaning they may have no validity at all. I'm really just saying, ask a bunch of things! Aim really wide!)

Have you read any lupus hardcovers written for patients? Those could definitely help you line up your questions. The "sticky post" about Resources has info you might find helpful. (All the "sticky posts" are helpful, actually.)

I really hope you can make something better happen soon. Please post more when you're up to it, OK? Bye for now, very sympathetically, Vee

 
Old 10-01-2009, 06:25 AM   #4
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cmjohnson2007 HB User
Re: So tired of being tired....

Thank you so much...

 
Old 10-02-2009, 03:02 AM   #5
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Location: Newcastle, NSW, Aust
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Tess295 HB User
Re: So tired of being tired....

I live in Australia and I will say this when it is cold I feel worse, I have just been diagnosed but I have had this for a while..... I hope you feel better soon
Tess

 
Old 12-04-2009, 07:36 AM   #6
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ajabj5 HB User
Re: So tired of being tired....

CM
I know exactly how you feel. I have been tired for so long and right now it seems to be the worst of it. It is difficult to get out of bed. I have gone to see my DR and for once when I really need her to sit down and talk to me she is over booked and is running in and out of my room like a mad woman. She has called me her fanomonon. I know I didn't spell that right.

I was diagnosed over 2 years a go. During this time I have pushed through and I am at the point where I can no longer do that. I don't have the strength or the energy. I have gotten her to give me 2 weeks medical leave and have told her that I don't see three more weeks of time off from working making a difference. It has taken me a long time to get to this point that I don't see coming out of it that fast. Especially when I have a very stressful job and it aggrivates my Lupus that is why I have flairs quite often.

My labs are as follows over the last 2 years:

TEst High Scale Mine
WBC 10 Lowest has been 15.8 (Average 17-20)
RBC 10 Lowest 8.5 (Average 15.0)
Platelets 10 12.6
There are a few others
My SED is at 4.0 and was told this was normal not in arthritis stage.

I ache and hurt all over. Especially my legs, neck, shoulder, and feet. I keep a headache all the time. NOw that I am complaining about problems she doesn't have the time. I am frustrated with her but I need to get better. I catch every cold, flu, virus, that is going around at work. My hads are dry and cracking from washing so much. No matter what I do I can't keep from being the human petre dish.

 
Old 12-27-2009, 05:33 AM   #7
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skampf HB User
Re: So tired of being tired....

I felt the same way during the summer, tired, hurt all over, someone said it feels like you have a pain suit on. My rummy put me on Planiqnil (spelling not right) in August, and when I went back in November they couldn't believe the difference in my energy and pain level. I can actually play with my grandson. Now it is December and I now have a kidney infection, there goes my energy level right down the tubes, and during the holidays no less.
Hope everyone has a Healthy and Happy New Year.

 
Old 12-27-2009, 06:56 PM   #8
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Location: Brielle, NJ
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heidiclouser HB User
Re: So tired of being tired....

It is even harder during the stress of the holidays. The fatigue is my worst lupus symptom.

 
Old 01-25-2010, 08:44 AM   #9
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karellh HB User
Re: So tired of being tired....

try to keep strong luv !! i also get flares with weather , i take hydroxychloroquine, solpodol 30/500, amitriptyline , meloxicam and tramadol . u sound like your desperate and i also went through what your feeling . See your doctor and ask about the above meds they range from anti-depressants that also help pain, anti-malaria medication and strong pain relief . I have got total relief with the above meds but it took 2 years to get on top of the pain , HOPE YOU GET THE HELP YOU NEED !!!! TAKE CARE AND KEEP STRONG ! SEE YOUR DOCTOR ASAP X

 
Old 03-11-2010, 10:32 PM   #10
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Join Date: Oct 2009
Location: Newcastle, NSW, Aust
Posts: 19
Tess295 HB User
Re: So tired of being tired....

Quote:
Originally Posted by cmjohnson2007 View Post
Hi All,
I am hoping to get some suggestions. Since the birth of my son almost 3 years ago, I feel like I have been in a non stop flare. Right now I am in so much pain and I feel just totally exhausted. Last year this time, it was the same thing. I actually went on short term disability for 4 monthsfrom my job. Every part of my body hurts and I was prescribed the fentanyl patch and Oxycotin. But I was sick and could not keep anything down for days because of them so I don't take it anymore. I was on steroids, but the Rheumy took me off because he said that it was really not doing anything so there was no point. I just don't know where else to turn. My last visit to the Rheumatologist he said that my blood tests were still high but they had not changed since I saw him last, so just see him in 3 months. I am on 250 mg of Imuran a day, and I am scared of any of the other drugs, but I cry everyday because I feel so bad. Should I get a 2nd opinion? Does anyone start feeling worse when the weather changes like this (I am in the northeast)? I feel like I am not going to make it.

 
Old 03-11-2010, 10:36 PM   #11
Junior Member
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Join Date: Oct 2009
Location: Newcastle, NSW, Aust
Posts: 19
Tess295 HB User
Re: So tired of being tired....

I am so sorry to hear that you feel so bad. I flare as soon as it gets hot and this summer has been a nightmare, bring on the winter at least then I should feel human for awhile. Yes I would get a second opinion your not suppose to feel as bad as you sound however my Doc said if I fell pregnant I would prob go into remision for the duration but then the hormone imbalance after the birth would prob send me into a major flare. I am having no more kids.

 
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