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zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 1/8/2015 5:42 PM (GMT -6)   
Hi,

I am new to this forum. It all started in Oct of 2014. I had minor surgery and after 2 weeks I was to return to work but continued to have extereme fatique headaches and aching hips and joints (hands,feet knees and neck) along with muscle weakness in my thighs. I was told to see PC Dr. PC did a urine test which showed slight blood and protien in the urine and proceeded with blood tests which was ANA positive 1:160 titer and a homogenous pattern. Referred to Rheumy. Rheumy disregarded the protien in the urine,fatique and the joint pain. He told me he did not think I had lupus. (great)I have a family history of AI. Aunt has polymyalgia, lupus, low thyroid, uncle has RA, mom has low thyroid, 2 cousins also have low thyroid, brother has type 1 diabetes's. These are all on my mom's side. I have Grave's disease for 25 yrs. He did several blood tests all but sed rate (36) and ANA (1:160) was negative for Lupus, RA (11), sjogren's and I presume other AI. I was relieved to hear this but when I asked then what might be causing this fatique, joint pain and weakness and his response is well maybe the operating table was to hard and caused muscle spasms. REALLY! I felt that was a very insensitive thing for him to say. I may not have lupus but my pain and fatique are real! Needless to say I have an appointment with a new rheumy in March.

I currently have only been released to go back to work 1/2 days. By the time I get home and do a few little things around the house I need to sit down. I am ready for bed around 7 but force myself to stay up to 8-9 so I will not wake up at night. I do sleep all night. When I think I have over done it I end up sleeping 10- 12 hrs easliy(weekends) and other days I just can't move and spend my day recuperating.. . Looking back I have had an ocassional rash and itchy patches on my face, arms and chest when in the sun. I now work indoors and have limited sun exposure. I always wear sunscreen and this past year I started wearing a visor when in the sun. Sores in my mouth that I thought and still could be because of mouthwash.

Currently I still have symptoms of fatique, weakness in thighs and achy hips. My feet hurt, knees hurt, shoulders, elbows and hands hurt. My toes and fingers occasionally feel numb. My hands swell and my temp is low between 96 and 97.5. I noticed when I feel bad my temp is low. I use to 98.6 before. I have noticed that I don't have much of an appeitite but I do eat and I have been gaining weight over the passed couple of months. Today my blood pressure was higher then usual. I have acid reflux and bloating and an increase with belching. In the past I have been diagnosed with costochondritis. I have increasing pressure in my eyes and have been referred to see an ophthalmologist and a neurologist. The only thing I was prescribed was the generic for Cymbalta which helps some with the achiness but not a whole lot for the joint pain.

Is it possible that with a posistive ANA titer that down the line I could possible be diagnosised w an AI? If not an AI then what could possibly explain how I feel and a positive ANA of 1:160?

Please help

Thank you.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/8/2015 10:08 PM (GMT -6)   
ANA can rise and fall. A good rheumy looks at the 11 indicators of lupus. You need to only meet 4 of the 11 to be diagnosed. ANA is one of the 11.
It's good you've changed rheumys.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/9/2015 12:16 AM (GMT -6)   
Hi I'm sorry that you've been having such a hard time with things. I'll try to answer a question for you, like Joy said a positive ANA is one of the 11 symptoms that Rheumy's look at to my a diagnosis. There are 10 other symptoms that they look at too.

Lupus is known as the disease of 1,000 faces. It can look like so many different diseases and that's why it's so hard to diagnosis this disease. Some patients are lucky and get the DX right away and others, like me, it took my Doctors 13 years before they added up all the issues I had and said yep you have lupus and we will treat you now.

As for your question as to whether you'll develop an AI disease or lupus with a positive ANA 1:160 that's hard to say. I can say to honestly that my child who is now almost 22, has had a positive ANA at 1:640 since she was 7 years old. Yes, she has some symptoms of lupus, but still to this day she's not reserved at DX of anything AI or lupus.

Healthy folks can have a positive ANA. There are loads of reasons to have your ANA show up positive. I'd suggest that you keep a journal and write down how your feeling. If you gets sores or rashes take photos of them to show the doctor how they look. It always seems to happen I will have a terrible rash going on and by the time I see the Dr it's gone.

It sounds like you may have something going on but it's not raised it's ugly head all the way. I'd suggested the journal, the photos, and try not to worry to much about the ANA. Stress is part of what makes our lupus flare up and be so bad. A positive ANA is considered 1:80 (which is barely positive by most Rheumy's) then the ANA's double up from there.....1:160, 1:320, 1:640......etc. They look at the ratio and the pattern of the sample. I just wanted to make sure you understood how the ANA was read. If you have any other questions, please feel free to stop by and ask away.

Good luck to you and I sincerely hope you don't get an AI disease of any type or Lupus. Take care and remember try not to stress over things to much it won't help the situation any.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 1/9/2015 4:27 PM (GMT -6)   
Thank you Joy and Barbara!

My PC also thinks something is brewing just not sure what. Does Cymbalta help with lupus symptoms? It seems to help with some of the back aches but not much for the joint pain that occurs in my hands and feet. I just hope they can help at some point cause the fatigue and pain is terrible. Last night I felt a little out of sorts and went to bed at 7:30 and had to get up for work at 5:15. It is now 2:30 and I am ready for bed.

The sad thing is nobody understands and my husband gets a little frustrated with me cause all I want to do is sleep. With no diagnosis I think people think that I am being a baby and that I am faking my symptoms. shakehead

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/9/2015 4:32 PM (GMT -6)   
To those who think you are faking -- "Why would I *want* to sleep all the time"?

Sometimes we are not sleeping as soundly as we think & often the rheumys order sleep studies or just go ahead and give us some sleep aid to help. Deep restorative sleep is a necessity with any auto immune disorder!

<As I stretch from my 3-hr afternoon nap - must've done too much yesterday.>
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 1/9/2015 4:47 PM (GMT -6)   
Thank you Lynnwood. My thoughts exactly!!!!! I have missed out a lot over the past few months and why would I choose sleep over having fun?

I must say you all are amazing people. I have read several posts and he trails and tribulations you have all been through give me hope. Of course I still hope that this is just a phase and I will be back to it soon.

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 1/9/2015 4:55 PM (GMT -6)   
Barbara
I have started a notebook of all of my symptoms current and past. I also put a family history and diagnostic issues I have had in the past. I have taken pictures also but they don't come out very good.

Yesturday I was walking in what I thought was a straight line but it felt off and I was sort of dizzy but not like spinning dizzy alost like I was being pulled to the outside of the arch if that makes any sense and then it happen again today but I was standing still. kindof weird

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/9/2015 7:36 PM (GMT -6)   
I've been informed by my niece, who was visiting, several times these past weeks that I waddle as I walk. This stuff does weird things to us.

Good idea on the journal.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/10/2015 1:29 AM (GMT -6)   
Zulily:

To answer your question about the Cymblata, as far as I know it doesn't do a lot for lupus joint pain. It's used to treat Fibro though. I've managed to win the lottery and have RA/Lupus/Fibro/LGL Leukemia. My Rheumy and PCM really pushed me to agree to take the Cymblata. I finally gave in and said yes I'd take it.

It helped with some of my aches and pains but I had a VERY hard time adjusting to it. I also have a friend who has been on it. It took her a really long time to come off it and I mean she even had to resort to pulling the capsule apart and counting out the number of little tiny beads in the capsule so that she could wean off this stuff.

I wish my doctors had told me about this before I started it. NOW, I'm on three different medications that are ALL DIFFICULT to wean off of. I'm scared to death about trying to stop my medications now. Are you on Cymblata? Did they start you on anything for your joint pain and fatigue? I'm praying that your pain and fatigue lessen in 2015 and that your Doctor can get you on the correct treatment plan.

Please take care and try to rest I know hard that can be, Hang in there and know we are here to listen anytime you need us.

Happy New Year and big Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 1/10/2015 2:03 PM (GMT -6)   
Barbara
Yes I am taking cymbalta. It has helped with the aches in my back and legs but not the joint pain in my hands, feet and knees. I think my last rheumy thought fibro but never told me. I had no idea that it would be hard to get off of. I want to stop it because I don't feel it is helping much and I hate taking meds that I don't need. I am not currently on anything for joint pain or fatigue. I will be seeing a new rheumy on March 5.
I too pray that this will all improve this year. I still pray that maybe they will find all my symptoms are related to my Graves disease
and be able to treat it. I worry that they say nothing one way or the other, although first rheumy said he doesn't think it is lupus but won't say what it could be with the exception that the operating table was hard and may have caused muscle spasms. Long time to have spasms since October. Kind of lose faith in his ability when he makes such a stupid comment.
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