Possible Lupus

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nikkione
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/19/2008 10:10 AM (GMT -7)   
Hey all,

I guess I was just wondering if the symptoms come on gradually over the course of a year or two, or if you awake and something doesn't work? (more like MS, you awake and a finger or similar is numb)

I ask only because Myself and my family can not decide from looking at the internet what i might have, the doctors and Neuro have ruled out MS. the MRI's were clear.

We do know that I have Arthritis and Costochondritis and Hypothyroidism. All started and continued steady for the last year. I have days where I struggle to remember, everything is so foggy but the doctors say that is just my thyroid. (I find that hard to believe as I have friends with thyroid problems and it takes a few weeks of not taking synthroid for her to get a little foggy)

I have several other problems like blurred vision that comes and goes if i blink. Sleeping problems WOW where to start! if i don't take anything to make me sleep then I'm awake all night, but if I do take some sleeping pills then I sleep but awake 3 or more times for the toilet. But Fatigue OMG all day I could sleep, and sometimes I do. I fall asleep in the bath if i sit to long in the same spot, and this is no good as my name suggests I have 6 children. As for the pain well sometimes I just don't know what to do, Some part of me aches or burns. but the Doctor says take 600mg Ibuprofen every 6 hours, and leaves it like that. I get this odd tremor I say odd if I relax I feel it like inside of me. But I turn and look and nothing is shaking it is just internal. Headaches are constant and sometimes feel like the pain is in my eye.

I suppose I was wondering if this sounds like Lupus so I could press the idea on my doctor, who seems to have left me to do his job for him.

All advice is appreciated.

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 1/19/2008 11:40 AM (GMT -7)   
Welcome Nikione!!

I'm sure sorry you are having so much trouble getting this figured out. These types of problems really do take a LONG time to figure out. Many of us have had symptoms since our teens and no dx until 30's or 40's.

Your symptoms really do sound like thyroid. There is an autoimmune thyroid condition call Hashimoto's Thyroiditis. Search for info on that and you'll see most of your symptoms listed. The pain, fatigue, and fog for sure. The burning you describe (along with pain) could be Fibromyalgia. This is helped be hot soaks in the tub for sure, but until recently there weren't any meds specifically for fibro. You could check the Fibromyalgia forum here at Healing Well. They could give you more info.

I think between Fibro and Thyroid, it really could cover your issues . . . the tremor is a mystery . . . maybe someone else here could identify with that. I've had such issue, but fleeting.

A rheumatologist is the doctor who would dx and treat Lupus, Arthritis, Fibro, etc. . . . in case you want to start with the right doc to track this for you. The thyroid issues should be handled by an endocrinologist is they are any more than slight.

The forum is a bit slow on most weekends so it may be Monday or Tuesday before you get many responses. There are some very helpful members here.

Some hot tea for you sis!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 1/19/2008 1:23 PM (GMT -7)   
I'm pretty much in agreement w/Rosie --

Lupus would be diagnosed by a rhematologist. If you're already seeing a rheumy, you might want to ask for a second opinion. (Not all rheumy's are experts on lupus, but all know it better than a family care doctor.) If you haven't seen one, it might be a very good idea -- you can find one familiar with lupus (in the US, anyway) by checking out the lupus.org website - find your local chapter and contact them - they will give you the names of doctors in your area who are actively treating lupus patients.

But to answer your first question -
nikkione said...
I guess I was just wondering if the symptoms come on gradually over the course of a year or two, or if you awake and something doesn't work?

Lupus symptoms mostly come on very gradually -- a lot of us are struck with the fatigue first, but a lot first notice other issues.

If you feel your known issues are being treated correctly, esp. the thyroid and you are still having this much pain/fatigue --

Keep looking! You don't have to feel this bad, I promise.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 1/19/2008 2:02 PM (GMT -7)   
Welcome Nikkione,
 
I agree with Rosie and Lynnwood too.  Keep a daily diary of all your symptoms, how much sleep you get, the food you eat, etc...  Your symptoms do sound like autoimmune in nature for sure.  Just have to figure out which one(s) you have.
 
The internal tremor you mentioned is VERY common in lupus. We actually have a thread dedicated to that particular symptom.  Somewhere on here.  NOt sure how far back it went.  LOTS of us have that.  Feels like an internal buzz doesn't it?  I get that as one of my main symptoms when my lupus is in a flare up.  That is something a rheumatologist would understand if you mentioned it.  I agree that you should get a referal to see a rheumatologist.  Get some blood work done, and go through all your symptoms with them.
 
Getting a lupus diagnosis can take years to get.  HOwever, if everything happens to line up perfectly, it can come sooner.  I'm glad to know you don't have MS.  That is a relief for you I'm sure.
 
Costochondritis is very common in Fibrolyalgia.  that is a hightened pain disorder. It can happen alone or along with lupus. I have both.  The fibromyalgia forum might be one for you to check in with as well.  Lupus and fibro mimick each other a lot.  Fatigue, pain, etc, is what fibro is all about too.  Just one more resource for you to check out!
 
Stay in touch,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


nikkione
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/19/2008 4:45 PM (GMT -7)   
Thank You that is all great advice.

I do not see a Rheumatologist, I had a blood test and they said it was usually between 1 and 20 but my score was 50 so the hospital then said take Ibuprofen 600mg every 6 hours and that was the fix for Arthritis! I do this but I still hear a crunching sound from my neck when i walk. The pain in my knees and hips and hands don't seem to fade at all. My doctor checks my T3 and T4 levels and so far the synthroid as worked at keeping things OK. My Doctor has referred me to a Neuro but never mentions the Arthritis. The Neuro said it sounded like MS but then dropped me when my MRI was clear, they suggested I try Acupuncture.

I would like to ask about the Numbness it is not that numb that I can not use it but, If I lay on my arm it goes numb and takes 5 to come back. and each day a different part of my body is numb, it could be my hip on the right or my left shoulder. It just swaps ad changes! like I said it isn't so numb I can not feel it is just rubbery numb like how your jaw feels after a dental visit.

As you can tell we are searching for idea's as the Doctors just keep saying it is all in my head, but that don't help me walk around or stop the pain.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/19/2008 6:10 PM (GMT -7)   
Traveling numbness is certainly a common enough symptom for lupus.

Acupuncture rather than a rheumotologist? Can I ask where you live? That seems like rather unusual advice to me.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/19/2008 9:05 PM (GMT -7)   
Uhhhh, yeah, I agree Lynnwood.  You need to see a rheumatologist.  You don't have to "request" one, TELL them you want a referal to one!  You have rights!  Before trying any alternative therapies, you need to know what you're dealing with. 
 
Yes, that travelling numbness could very well be neuropathy.  Very common in lupus.  I'm so surprised your doctors aren't clueing in on this stuff????  There are other reasons besides MS (which you don't have) that would cause numbness like that.
 
Keep us posted,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


nikkione
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/20/2008 9:35 AM (GMT -7)   

Hi,

I'm living in Orlando Florida and this is where my Neuro is, she does all the Acupuncture herself.  On each of my visits the majority of patients there are for acupuncture.

I was born in Hinckley, Leicestershire and lived in England until I was 32, this is one of the main reasons why Lupus keeps getting dropped as an option. Apparently Europeans don't get Lupus.

This whole thing started about 2 years ago, until then all was fine. I trained police dogs and worked for the MOD, police and prison service and in my spare time raised 6 kids. Then I got pregnant with number 7 and it was hard work getting pregnant and the whole thing felt wrong I had a miscarriage and they found at that time that I had 2 antibodies in my blood. Also 4 weeks after I had to dash back to England as my mother was passing, I got there and sorted all the arrangements for that, and kinda thought that I was struggling to think, but put it down to the loss of my mother rather than an illness.

After this I never got on my feet, I mean I walk around but so slow and I have lost my balance gained weight, then the thyroid got spotted for the weight gain but still I cannot get any pace back to my life. I walk around in a fog I have to think to stay focused in a conversation. I have noticed a pattern to this first I get like a acne breakout on my face or in my hair, then I get the headaches and eye pain, blurred vision, a few weeks on the fogginess gets worse then the lack of interest in anything sinks in and the numbness starts. the pain and fatigue kick in and I spose around this time I just sleep. Then my head clears it is like OMG great the best ever and this lasted for 2 weeks then the whole  cycle started again. There was 2 cycles in the one year and I'm on another cycle now.

I have told Doctors the exact above and they tell me they think it is MS because they say the eye pain is ON. But after the MRI was clear they ran tests for B12 and Lymes, Diabetes and even HIV - they all come back clear and so I get that they think it is all in my head. They advise me to just take Ibuprofen to keep the Arthritis down and Acupuncture to make the joints more supple.

That is the best case history I can give. Thank You so much for your advice, it is so nice to have someone listen to me and not judge me as mad.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/20/2008 10:06 AM (GMT -7)   
Nikki,

I sure hear your frustration. Actually some of us at this forum are not yet dx'd. I have been dx'd with lupus and then undx'd by another doctor. One says Lupus, one says UCTD (undifferentiated connective tissue disease), Hashimotos, Arthritis . . . etc. Depending on how bad and how chronic your arthritis is, a rheumy may put you on plaquenil. It is first guns for auto-immune/connective tissue disorders. It is used in conjunction with other anti-inflammatories like Ibuprofin, Tylenol, Naproxin Sodium (Aleeve). You take to plaq every day, even when you feel well. And you take the anti-inflam as needed (but most of us need it every day).

My issues (joint pain, all-over flu-like achieness, fatigue, brain fog, numbness and tingling, etc.) are only kept under control if I take both meds ALL the time. As soon as I back off on either, I get in trouble. When I flare, this combo won't help me and I have ended up on up to 9 different rx meds. . . . But I have no organ involvment nor systemic disease . . . so I am considered mildly affected.

It is REALLY hard for a doctor to really nail this down and call it a particular name. The best they can do, until they get it figured out, is to treat the symptoms. I actually appreciate that I don't have the word Lupus in my medical file because it can make it difficult to switch medical insurance if you have a gap in coverage. Some doctors will stand on their heads to keep from giving the Lupus dx for this reason. They just treat the symptoms.

Make sure to read the posts in "Lupus Resources" (link at the end of my signature). There is some info we have pulled from the forum for new members that may be helpful to you.

Hang in there . . . this really does take lots of time to dx unless you end up with extreme symptoms like kidney damage or way wacko blood work. If you get rashes or mouth sores . . . make sure to take pictures because these can be very helpful to a rheumatologist. By the time we get in to see them, the rashes and mouth sores can be can (and usually are). Keep a symptom journal and bring your list with you to the doc.

The ibuprofen can be very helpful if you take it 3-4 times a day EVERY day. If you wait and take it just when the pain reminds you, it is much less helpful. You want to "attack" the symptoms . . . not "chase" them. If taking the ibuprofen for a couple weeks straight isn't helping, get a referral to a rheumatologist and spend a lot of time working on your symptom list (see post in Lupus Resources).

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/20/2008 10:27 AM (GMT -7)   
The neuro sounds like a quack to me -- acupuncture is not a "normal" course of treatment from a Board-Certified neuro. I would get a second opinion from a more traditional neuro.

Here is a link to the Florida Chapter Lupus Org where they can help direct you to a lupus-aware rhuemy in you area.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Post Edited (Lynnwood) : 1/20/2008 10:33:12 AM (GMT-7)


nikkione
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/20/2008 3:22 PM (GMT -7)   

Hey thanks again,

I have read the Lupus Resources as suggested. I guess allot of it is common sense, but when we are with the Doctor we do tend to get flustered and forget. (The idea of the pictures is fantastic)

I didn't know that IBS was a symptom or connected to Lupus I have had that for several years. I suppose the more I look into this the more it sounds like I have found what is wrong. (Not sure how I feel about that yet)

I suppose now I have done the doctors job and found out what I have, I should now get busy convincing them that I have it, or at least get some help with some of it. Acupuncture will not do it.

 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/20/2008 8:26 PM (GMT -7)   
Hi Nikki . . . IBS (Irritable Bowel) . . . sounds very much like IBD (Inflammatory Bowel) . . . NOT the same thing. IBS is a syndrome where the bowel rythym is wacko. But Inflammatory Bowel is inflammation on the lining of the bowel (an autoimmune attack on that tissue) can cause more severe things like ulcerative colitis.

YES . . . carefully document everything and then spend a lot of time making your list easy to read. It should be a list . . . not paragraphs. The doc ticks down the list and stops and asks questions where needed. A rheumatologist will spend a great deal of time asking questions. They generally set aside an hour for the first visit . . . so plan on waiting up to two months or more for your first appointment.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


nikkione
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/21/2008 8:24 AM (GMT -7)   

Hey all,

The IBS/ IBD I have no idea what one I have. When it first started they said Crohns and I was in hospital I got de-hydrated and was not good. They put me on sulphur and some pain meds and anti nausea all was OK. I mean there are still some drinks and food I cannot put to my mouth unless I stand next to the bathroom door! But on the whole I can cope.

Then I came to America and got told that it isn't Crohns it is just IBS so they stopped the sulphur and the pain and anti nausea. And I spent the first year of my American experience in one hospital or another rolling in pain. The emergency room would do their job and place a cocktail of drugs into me, rehydrate me and get my blood pressure back down. I would leave and my doctor would say the tests are fine it is just IBS all triggered and upset due to a different diet. I believed him the diet is so very different over here.

I then went and stayed with a close friend in Colorado so I could see another part of America and while I was there I got ill. I got fixed up at the local emergency room and went to a follow on with a Gastroenterologist. He said my Doctor in FL is a joke there is no way I have IBS, But that was the end of my visit so I was back on the plane to FL. I know that the Gastroenterologist wrote to my doctor as he mentioned it, but nothing came from it.

I seem to be rambling here. I will for sure document everything.

Thanks for your time.

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/21/2008 4:24 PM (GMT -7)   
Hi Nikki, I was checked for Crohns and other bowel problems about 5 years ago. To make a VERY long story short, I was finally dx with Celiac (aka gluten sensitivity) in Sept 2003, check out this link for symptoms and other info: www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

After going on a gluten free diet for a couple of days I could tell a difference, my abdominal pain was gone. However I continued to struggle with diarrhea every single day. Finally in May 2005 my 3rd rheumy dx me with lupus and discovered it was the cause of my other GI probs I had despite being 100% gluten free.

My point is this... Lupus can attack your digestive tract.. here is a link with more info. It can be rare and some doctors may not believe it. There are not many of us out there but we do exist... my doctor only has a handful of people like me. yourtotalhealth.ivillage.com/can-lupus-affect-intestines.html

IBS can also be a symptom of lupus and it is up to you to figure out what your problem stems from. Keep a food diary every day of what you eat and when you have diarrhea. You may be able to find a food trigger. It could be gluten, wheat, corn, soy, dairy, etc.

Please feel free to ask more questions, I am here to help in any way I can. Take care and feel better!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


nikkione
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/24/2008 7:09 PM (GMT -7)   
Hi all,
Just a quick update I kind of turned into a sponge the last few days just reading up on all the links you guys left for me. Thanks for that. I do feel that I am onto the right path, my thyroid problems and all the different issues I have fit so well.
I have an appointment for tomorrow afternoon and hopefully should get a referral to the local Rheumatologist.
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