Positive ANA negative RNP other symtoms

[Marie822]

I have had neuropathy since Jan 2009, migrainges, fatigue, nausea at times when pain is milder. I am in constant pain-back and burning in feet and legs. Muscles are hardening. Had mouth sores on both sides of lips once. Swights with any exertion.Had to stop working in August. My ANA was 1.80 but RNP negative. Current treatment Tylenol 3 w/ codeine. Tried Lyrica, Prednisone, Topimirate and no improvement. Can you help?

[karajo]

Hi MArie, and welcome to medhelp lupus forum

I'm not sure I could help you.  Some of your symptoms sound like lupus.  But I knwo other illnesses can cause similar symptoms.  They are fibromyalgia, chronic fatigue, lymes, and low vit D.  

These are the 11 criteria for lupus.  One must have at least 4 of these for a dx.
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
6. serositis - inflamation (inflammation) of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood countor lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

If at least 4 of these sound familiar, I would encourage your dr. to redo the ANA, but this time spend some time in the sun prior to your test.

[Marie822]

Thanks for your input. I see a rheumatologist in Jan 2010. Just had blood work redone Nov 3. See doc on Nov 27. Is there anything I shoul be asking. I feel like I'm constantly complaining but is there any relevant things I should insist on? Mostly my checkups have been pretty standard. Its so nice to have some information and positive feeedback.
Thanks for your advice and concerns.
Regards
Marie822

[TrudieC]

I would really suggest you take a NSAID to help with the inflammation.  The Tylenol 3 can help with pain but taking ibuprofen, aspirin or naproxen will help to keep the inflammation and the pain down.  Keep good track of your symptoms and ensure you discuss them all at each appointment.  On the Arthritis forum there is a good posting at the top about what to discuss with your rheumatologist on your first visit.  You might want to take a look at that.

[karajo]

I would certainly discuss the muscles hardening.  

I agree w/ Trudie, write your symptoms down and keep a journal.  Not just your symptoms, but what you did each day and what you ate.  Sometimes, symptoms can be related to sun exposure or over exertion.

[Marie822]

My last blood work in july had ra of 14. Started physio and have had 3 sessions. Going to see my family doc because the physio is torturing me. Get home and can't walk at night. Last session, I had to sepnd the whole night in bed, then the following day in bed. I have never done that before. I don't think physio is helping. Do you know if this process is beneficial for pain. My experience says no. I will keep journal. Woke up this morning in torturous pain with no exertion the prior day (ie bed rest all day) Also physio told me to use heat. I have been sleeping with therapeutic heating pad for about a month. Don't see a significant improvement in am (just soothes at night to fall asleep)..Does heat help?
Thanks
Marie 822

[TrudieC]

Overdoing exercise is never a good thing with Lupus and especially not if you are flaring.  Stress (physical, viral or emotional) and lack of sleep can also contribute to a flare and increased pain.  I find that soaking in a warm epsom salt bath each morning helps me get going.  If I have pain during the day I wrap in a heating pad.  And at night I have a heated mattress pad that is wonderful.  I see you live in London and I am less than hour away.  You might also want to try massage therapy with someone with experience with Lupus and myofascial massage.  I find it very beneficial.

Please keep us updated.

[Marie822]

Good morning., Been up since 4am. This is my latest wake up time (was previoulsy 5am). I actually live outside of Embro (Harrington). Thanks for the tips. Doc is now starting me on nortriptyline (anti-depressant). I am a little nervous because I'm bipolar (been stable for 7 years). Don't want to upset the applecart. He is leaning toward fibrom. but I'm not certain he is right. See the Rheum in Jan. It's strange because even though I'm in constant pain my mood is still good. I try and remain optimistic. I have stopped working, are you still working? Don't know what the future will bring either. I guess we have to just live in the now.Please keep in touch because it is nice to share these exeperiences with someone who understands. How has your family been handling it? Mine is in denial.
Look forward to hearing from you and couldmn't get the friend setup to work. Can you please try again. Thanks Marie822

[TrudieC]

Hi Marie.  The friend thing did work.  We are now friends!

The Rheumatologist will be a huge help to you.  I have found that family doctors are not very good at diagnosing this stuff and mine certainly doesn't understand Lupus at all.  Unfortunately we are forced to take on the virtue of patience.

It will get better once they get you on a proper treatment plan but it will take some time.  I was laid off when I was first going through this.  I think the stress of losing my job was a big trigger for me.  The pain was so bad in the early days that I was very concerned that I'd not be able to handle a job.  My Rheumatologist started me on Plaquenil last April and I started my new job in May.  I was so fortunate to find a job where I worked from my home office and that has limited travel required.  Over time the plaquenil has been helping more and more and I am finding it much easier to work and participate in life.  I've been able to keep my mood good through this too.  I think going for massages, having less stress and learning not to push myself physically has helped that.  

My husband had a hard time initially.  Like many men he gets frustrated at not being able to 'fix' me and hates worrying about all the different health issues I've had.  He did not deal well with me continually talking about it which I did in my earlier days since I was so darned scared and in so much pain.  I tend to keep things to myself more now and only let him know when I can't do anything.  He has been good in realizing that on my bad days that I will just have to cancel plans or not accomplish much and we have both learned to let the little annoyances go in our lives.  Having a fight or argument just wipes me out and then I am useless the rest of the day.  Both he and my son will pick up the slack (OK, they try) when I say that today the housework or cooking, etc. is just not going to happen.  

Feel free to message me at any time.  I sure wish you could get an earlier rheumatologist appointment though.

[Marie822]

I've been struggling with my husband too. he is basically a man's man. ie no housework, no groceries, no laundry, no cooking, no bills, etc. I've learned early in our marriage that when I have a sick day, according to him, that I can do my work tomorrow. So not a lot of sympathy there. My daughter is 11 and trying to help, but still trying to have some fun too. I wouldn't however give either of them up for the world.
Mornings are my best time and if I get things done I relax in the aft and night. I'm basically a type A personality and have a hard time letting things go. But I'm learning to moderate more. I'm especially enjoying the time I now have with my daughter and husband. Work itself seems really distant to me right now. Overall I'm quite happy and just bear the pain all day quietly. Thank God for Tylenol 3's. They help a little bit and keep me moving.
It's great that we have this in common. I enjoy our chats and look forward to talking to you soon. PS I'm also learning to reach out a little more. Take Care Marie 822