[jainy]

I am turning to the folks on this board for any support and information you can give me, as I am concerned that I might have Lupus and not be diagnosed.

February 2009
Severe fatigue, headaches & "brain fog"
My doctor sent me for an ANA, results were 1:160, speckled & homogeneous patterns. Further tests (Anti ds-DNA, IgG, IgA, IgM, C3 & C4) were all negative. I was told it was not SLE, rather that it was "in my head".

July 2009
A new doctor did my ANA again, results were 1:320 with a speckled pattern. I was also found to have low ferritin and hypothyroidism. Treatment with 'synthroid' and iron supplements has helped with fatigue somewhat, but still need to nap every few hours.

Additional info
- I do not have the butterfly rash, but I do get rashes on many medications
- In the past week, I have started to get nagging joint pain in my hands, left wrist and left elbow.
- I have been ill frequently with colds, flu for the past year
- Migraine headaches have continued with more frequency.

Is it possible that I have Lupus? Even if my Anti-DNA was negative? I am especially concerned since this is the first time I've experienced any joint pain.

Thank you.

 

[Katharine]

Hello Jainy and :welcome:

It is possible that you have lupus but much more investigation will be needed to confirm that.

It is fairly common among people with low or negative ANA to be told that their symptoms are "in their head" or due to depression/overwork/stress. Obviously those factors can never be ignored but they seem to take too big a place in doctors' minds.

With the symptoms you have, it would certainly be worthwhile getting a referral to a rheumatologist specialising in auto-immune diseases.

Whether it is lupus or not may not be easy to determine straight away as auto-immune diseases are very complex and lupus itself is known as the great imitator of other diseases.

People can be anti ds-dna negative and still have lupus. Sometimes other indicators show. Some people only have positive ANA... and a few (only about 2-5%) have no positive ANA.

Diagnosis is based on clinical symptoms and blood work and often requires an experienced rheumatologist.

Bye for now,
Katharine

 

[cath]

Hi jainy,

Welcome to the forum!

I'm sorry you are feeling unwell at the moment.

It sounds like your doctor is being pretty thourough with the blood tests. Have your blood pressure and urine been checked? What about the more general tests like liver function, renal function and full blood count?

What sort of doctor did the tests for you? Have you seen a rheumatologist? If not, ask for a referal, because diagnosing (or excluding) lupus really should be the task of a rheumatologist, not a GP.

If all these additional tests were completely normal, and you have no other symptoms except the ones you posted about, that is for the moment good news. I can understand why a doctor would be reluctant to give you a lupus diagnosis at the moment. Both your positive ANA and the symptoms could reasonably be explained by the hypothyroidism.

On the other hand it is impossible to exclude the possibility that you might be in the early stages of developing lupus. The sensible thing to do is to remain calm, but be allert for new symptoms and report these to your doctor. It is important that lupus be correctly diagnosed and treated, but if you are being tested for possible 'silent' problems like high blood pressure and proteinuria, then waiting and watching how your symptoms develop is unlikely to damage your health in the short to medium term. Many people have symptoms for several years befor they are diagnosed. The upsides of this are (a) you have time to do things like organise life insurance and other financial matters that become impossible with an official lupus diagnosis, and (b) that the people who develop mild symptoms slowly over time tend to be those who's disease is less severe in the long term.

Of course fatigue and brain fog are debilitating and miserable, and I can understand you are feeling pretty bad. It would also be worth trying to get more investigations done regarding your migraines. Have you been tested for antiphospholipid syndrome or other blood clotting abnormalities? Do you smoke? Or use the contaceptive pill? Have you tried medications for migraines like sumatriptin? Migrane headaches can be a symptom of lupus, but like many of the other symptoms they can also be caused by other things. It is in any case woth investigating further and seeing if you can't get the migranes under better control.

Diagnosed or not, you are very welcome to post here and ask questions!

All the best,

X C X

 

[jainy]

Thank you!

Dear cath & Katharine,
Thank you for such a warm welcome and such thoughtful responses. I can't tell you how much I appreciate you both taking the time to write to me.

In answer to your questions, I was originally referred by my former family doctor to an Internist who specializes in Rheumatology. The Internist was the one who thought that my problems were 'in my head'. My new physician has referred me to a Rheumatologist to explore my increased ANA, but I will not see her until early December.

I am a non-smoker, not using birth control, and my blood pressure and kidneys seem to be fine right now. I did see a neurologist for the migraines who was reluctant to treat them as I have a history of blood clots and miscarriage (not antiphopholipid) due to Factor V Leiden deficiency. She recommended I stick with Ibuprofin. A CT scan showed that I have some frontal lobe atrophy which was unusual for my age (35).

My main concern is the new symptoms in my hands and wrists. In the span of just a few days they have suddenly become very painful. I have no idea if this is a lupus or RA-like symptom, but as autoimmune disorders seem to run in my family, I guess I am concerned.

I know that there are a lot of people who are much worse off than I am. I have insurance and am able to work part-time. But my hands...ouch...even typing this response is hurting them.

It is a relief to know that even if I do have lupus, the slow onset of symptoms could mean a better prognosis. It is also good to know that I'm not the only one who has been told that they are imagining symptoms.

Again, thank you so much for making me feel welcome on your board!

:thanx:

 

[Pink Pearl]

Hi and welcome to the board.
Early on, my wrists and hands were one of my major symptoms. I ended up wearing splints on both wrists for over a year. The splints immobilized my wrists so that the bones and muscles were held in one place. I did have to get custom splints as the "over the counter" ones were not stable enough. So, that may be an option for you now.

My first lupus symptoms were migraines at age 5. BUT because I am ana negative, and always have been, I was not diagnosed until 35. Yup, 30 years of mismanaged care. I had all my blood work re-done a few months ago and I am still ana negative. I have tested positive on a lot of other tests, so was finally diagnosed, but not until I had lost 60% of my lung function and other problems.

Something that gets overlooked at times is that the diagnosis of lupus is made on meeting 4 of 11 criteria. That is with OR without lab work. Plain and simple. When this gets overlooked by doctors, it is not doing the patients any help.

With your appt with the rheumatologist so far away, you have a challenge on whether you push your gp to run the bloodwork now and then forward the results to the rheumy, or you tough it out. I would push for the first, but that is me.

I understand your need for a diagnosis and to get accurate treatment for your health. I wish there was a quick fix and answer for you. Sadly, with this disease there are no easy fixes or answers. The one thing you can do is to rest when you need to, stay out of the sun, and eat as "healthy" as you can. Those will help you to do as much as is possible until you can get in to see the rheumy and get your testing accomplished.
Sally

 

[jainy]

Hi Sally,
Thanks so much for your response. I'm sorry to hear that you had 30 years of mismanaged care. It's hard to wonder what life might have been like for you if you were treated properly from the start.

May I ask what blood tests you think I should ask my doctor to run? I was under the impression that the Internist I saw ran all of the blood work that was necessary.

I have good news; my hands aren't as painful today as they have been the last little while. Hopefully they will stay this way!

Thanks again

 

[Katharine]

Hi there Tanya,

I think, from the sound of it, your internist has indeed been very thorough and that you have had all the blood tests required for now.

Katharine

 

[Pink Pearl]

Hi Jainey,
For a refresher on lab tests, you can go to the web for National Institute of Health: www.nih.gov/niams/
They have some of the most up to date info on sle and you can find all the lab work and the values.
For the US residents, their literature is free. I'm not sure if it would be to Canada. Can't hurt to ask.

In the twenty plus years since I was diagnosed, I've found there is life in, with, and through lupus. One of my doctors told me that just because I have lupus, does NOT mean that lupus has me. I do what I can to ensure that things go smoothly, and if they don't, well, I tried, and I just keep moving on. I do what I can, and what I didn't get done today will need to get done tomorrow.
It was hard to learn to let go of what I can't change, but it is the only way for me to be able to survive lupus.

It's been a long road. Knowing that I have lived a lot longer than I was expected to, and I have blazed trails for those who will follow helps. Scary,? You bet, but there are a lot worse things to have than lupus. That is just my own opinion and experience. I take hope in knowing that in 1960 the 5 year survival rate was about 30%. Today, the 5 year survival rate is between 95 to 98%. Those are pretty good odds. It doesn't negate the toll it takes on us, but we are living a lot longer than ever before. We are the first generation of lupus patients who are living as long and as well as we are. So, if the doctors don't have all the answers, we can help them as much as possible and help them to learn what we live with.

Just as an aside....
In the Bernie Siegel, MD, book: Love, Medicine and Miracles, he advises to draw pictures of the following:
your disease (here lupus)
your disease and you
your doctors and your disease
you, your doctors, and your disease
For me it was interesting to have a face on lupus. I had never confronted the disease like that. Once I knew what I was fighting, I could face it and tackle it.

For new people it often helps to keep a journal of your health issues of the day. Take this to your rheumy dr appt and go thru it with him/her. Keep note of your fevers, joint issues, rashes - take pics if you can. Hopefully this helps your rheumy to go thru all the issues with you and helps to progress your treatment.

Sorry to get so long.
Sally

 

[debatat]

Hi and welcome to the site. It is a great place to get info and support. I would use the time till you see your rheumy to have a history of all your symptoms. keep a symptom diary note fever, pain take photos of rashes etc.

Take care

Deb

 

[Maia]

For blood tests that should be run.. I think the ANA, dsDNA, the ENA's (Extractable Nuclear Antigens which include SSA, SSB, RNP, Smith, etc.) should be run. It's not clear to me they were run by the internist from your prior posts at least. Retesting the anti-cardiolipins and lupus anticoagulant may be a good idea too.

This is in addition the the CBC/FBC, creatinine, etc.

Good luck with the next doctor and I hope you get somewhere soon with some helpful treatment.

 

[jainy]

One more question, please

Dear debatat, Maia, Katherine & Pink Pearl;

I wanted to thank you all for your insight and advice. You are a very kind and welcoming community.

I was particularly intrigued by the idea of drawing a picture of my illness. The idea is intriguing and frightening all at the same time. Also, the suggestion of keeping a diary is a great one. I've been avoiding it because somehow it seems to make it feel more 'real'.

This morning I woke up feeling like my body had been broken. My entire body hurt. It took me 2 Advil + 2 Tylenol and a half-hour sitting in a hot bath to begin to move my hands, wrists & neck. I feel like I'm 90 years old!! And stranger still, I didn't feel like this a week ago.

I have one more question, perhaps you can all help with -

My test for thyroid antibodies (Hashimoto's) was negative, nonetheless, my TSH was high and I'm now on synthroid.

Is it possible that my ANA of 1:320 was caused by my thyroid? Or would that only be possible if my type of thyroid disorder was autoimmune?

Thank you again.

 

[cad]

Hi there and welcome,
I am not going to be too great today as I am not at my best, but I just wanted to say that what you have desribed is how my initial symptoms started, first my throid and then I didn't recover an djust developed more symptoms, joints was the fatigue an djoints was the first. My joint ain started on one side actually inelbow, then wrist then started to beccome symetrical. I have MCTD/ Llupus my specialist now put in all his letters. I ouwld take this seriously. I do not have anti dna or dsdna, I did not have any other antibodies just speckled ana the firsr couple of times too and my symptoms had become quite severe before anything further showed up. I did have very high level anti thyroid antibodies and do have autoimmune thyroid disease. Ususally low level positives are associated with other diseases and speckled pattern not homgenous and not usually as high as 1:1320.

I really hope things go well for you and you can get some answers, and things get better soon. Definately would get a refferal to a rheumatologist, as he/she might spot things that are not really obvious and will also know how to investigate further with the right tests.

Sorry for my typing and vocab!

Good Luck.

Take Care.

Cassie.

 

[Pink Pearl]

Hi Jainey,
I'm curious if you are sleeping on a flat "normal" mattress. The reason I ask, is that I have found that using a flat mattress triggers major joint and muscle pain. I have solved it by using 4" of mattress toppers. It avoids hitting pressure points and I am able to sleep and wake without major pain. Perhaps it is some thing you may want to consider.

As others have said, lupus is not always a predictable disease. It tends to write its own rules and plays. It is a challenge to learn to live by the variety of ways it can hit. Even after all these years, I am not sure that I have mastered it. Just learn to roll with the punches. Some days the best thing that you can do is just survive. Others are much better.

Take care of yourself. Perhaps one of the hardest lessons to learn from sle is to listen to your body and do what you have to do that day and do the best you can.
Sally

 

[jainy]

Hi Pink Pearl & cad,

Thanks again for both of your helpful comments. PP - I actually do have a deep pillow topper on the bed, but the joint pain is so new that I'm not really sure what is causing it. Funny thing is, the pain comes and it goes. For the past few days it has been my hands hurting, tonight the pain is in my ankles. But all day today, I was fine.

I feel like I'm a giant hypochondriac if I mention to my family and friends what's happening with me. I'm really glad to have this place to talk with others.

I have a Rheumatologist appointment in December, so just two months away. Hopefully by the time I see her, I will have a better handle on my symptoms. I just have a gut feeling that there is more going on.

Thanks again!

 

[cad]

Hi Jainy,
I think you are right to be vigilant anf not ingnore your symptims.

When my joint ain first started I remeber metioning it to my endocrinologist and then going back a few months later and saying I got a matress cover now and things have improved a bit so maybe I was just tired and my bed was agrivating my joints. He had already run and ANA which was paoitive but I did not find this out untill many months later when I had become very ill!!

In the beginning I think the symtoms can be a bit illussive and its difficult not to feel like you are over reactiong or being a hypochondriac. But its also impartnat to listen to your body and actually picking these things up early can allow good monotoring and treatment to start and hoefully help with preventing things beofre they get to a point where they become more serious and bithersome.

Its great you ahve a rheumy appt, don't hld backl and list all yor symtoms to take with you. The doc will look at your whole pcitur and histry and your bloods run by him might actually come back differntly with a little more time passing. In the meantime of your symptoms become really troublesome, go back to your gp for supprt with pain releif and perhaps anti inflammatories if the joints become a contant pain.

Good Luck

Take good care

Cassie.

 

[x_claire_x]

Oh Jainy your posts remind me of me last year before diagnosis... do keep that diary and let them know how you are... I can't believe in hindsight that I put up with so much pain etc without being more assertive.... I remember walking the dog like an old woman in the mornings and wishing I could just curl up on the heather for a few minutes to sleep.... and I thought that was normal fatigue!!!!!!!!!!!Sometimes we just don't listen hard enough to what our bodies are screaming at us!!! If you need an earlier Rheumy appointment then do ask to go on the cancellation list or make them hear that you are not feeling well at all. All the time you are quiet they think you are ok.... I hope you get some answers soon so that you can move forward and feel more comfortable, though it may take some time... all the best,
Claire XX
PS I have always been anti DNA negative, but rnp positive hence having MCTD...

 

[jainy]

Thank you cad & x_clair_x,
You are both very kind to share you stories. I hope you know how much it means to me to not feel alone in this crazy past year where nothing in my body feels right.

Today I was totally out of breath walking up our stairs (not usually any big deal), when I lean over, everything aches. My sinuses felt congested, my head is hurting. I feel much, much older than I did only a short time ago.

My husband thinks I have Hashimoto's, but my test for thyroid antibodies didn't detect anything back in June.

Do you ever have trouble thinking clearly? I am taking a graduate mathematics course right now, and none of it is sinking in. Along with the joint pain, my IQ seems to be slipping too.

Does walking or exercise make you feel any better? I read that it can help wit stiffness. My first step out of bed is to the cupboard to get an Advil. I can't really imagine going for a walk or run right now, but if I thought it really would help, I will try.

Thanks again for all of your support & advice.

 

[lazylegs]

Hi Jainy,

Light exercise can be helpful for the joints. Exercise keeps the joints lubricated making movement easier. You shouldn't push yourself though. Pushing through the pain can cause more problems.

I find light exercise helps both mind and body. When I am real bad I stick to simple range of motion exercises. They are just enough to help with the stiffness. On better days I walk. I also do easy yoga. Others on the site swim since it is so easy on the joints. When exercise is too much you might want to try some relaxation techniques. Releasing those tightly held muscles will help with the pain.

Take care,
Lazylegs

 

[jainy]

Hi lazylegs,
Thanks for the motivation! I know that I have to start moving more, I guess the joint pain is so new, I haven't really figured out what to do with it yet.

I just reviewed my last post and realize how whiny I sounded...I'm sure that there are a lot of people here dealing with way more serious symptoms than I am dealing with now. Thanks to all of you for your kind responses.

Do you have any thoughts about how to improve the pain in my hands? Are there exercises for hand joints too?

 

[KarolH]

I soak my hands in very warm water with epsom salts.

It works wonders, try it.:wink2::wink2::wink2: