[Sheer]

So. My battle with this is years long. Things have been getting worse over the past two years and at the moment I can barely use my right hand most of the time (arthritic symptoms--including severe pain and easily visible redness and swelling), I've been diagnosed with celiac and regularly have problems with my digestive tract (mostly nausea and vomiting. I feel sick most every day). I've had rashes, hair loss, recurrent costochondritis...

Anyway. You get the picture.

So. I had more xrays (negative for any kind of arthritis apparently) and blood work...

and here's why I'm upset.

9 months or so ago I have a blood test. My ANA was completely low-normal nothing at all to write home about.

This time it was on the very upper end of normal (like borderline abnormal). But, apparently, that's insignificant and not worthy of any further action...

I just have to live with it.

Yes. Live with the debilitating pain, swelling, nausea, vomiting, headaches, and all sundry symptoms.

*screams*

Seriously.... how can I do that? I'm at my wits end. I can't ...

What is it going to TAKE for someone to actually HELP me with this? Lose use of my hands entirely? Lose more than 30% of my body weight?

Sorry.

I just... had nowhere else to go and I'm SO upset and I don't know what to DO...

:worried:

 

[Maia]

Welcome to the site but I'm sorry to hear that such pain and frustration with the medical community has brought you here. Certainly, many people here waited years to be properly diagnosed. It's very unfortunate - it happens way too often.

How long have you been diagnosed with Celiac? Have you been following the strict no gluten diet & not seen an improvement yet? Gluten is hidden in just about everything, so it's hard to avoid unless you buy gluten free labelled foods or fruits/vegetables. Celiac can cause many of your symptoms of course all by itself... but it sounds like you are certain there is something else going on.

A low positive ANA (1:40 titre or even 1:80 titre) is not taken too seriously by doctors because it occurs in 5-10% or more of the healthy population at large. It doesn't necessarily mean that there is nothing wrong with you, because clearly there is something wrong with you. A borderline positive ANA can be meaningful when there are other clinically relevant symptoms such as you have. Only expert rheumy's will be willing to diagnose something like lupus with a few of the symptoms and borderline positive bloodwork though. You can ask for recommendations here for good doctors...

Have they tried just symptomatic treatment yet like using NSAIDs or some other kind of pain killer? It's hard to believe you're being told to live with it with visible swelling and redness of a hand just because x-rays are normal! X-rays are almost always normal in lupus patients because the inflammation does not damage the joint like osteoarthritis does or rheumatoid arthritis does.

Some people here have negative ANA's yet were diagnosed by skin biopsy proving their rashes were due to lupus. You could try to see a dermatologist and ask for a biopsy to see if they can determine what is causing the rashes.

Did they run additional blood tests like the ENA profile after the low positive ANA (tests such as SSA, SSB, RNP, etc.)? Have you seen a rheumatologist or getting care from a GP?

By following a gluten free diet for a month or more, the symptoms due to Celiac should improve greatly. Those that are left behind clearly need more attention than what you are getting now & I just hope that you'll continue to fight the good fight because you are worth it! Don't give up!

 

[Sheer]

Thank you for your reply Maia. I've been gluten free for almost a year now and while it did help greatly with the GI tract stuff, bbut for the past month (despite eating little/homemade vegetarian (vegetable) foods) I've been feeling nauseous every day, everything else is getting worse...

I saw a rheumy over a year ago when I first started getting really bad. That was when my ANA was completely negative. It was negative last time bloods were take about 8-9 ago months. Now, I've had an increase in visible symptoms (ie: my arthritis symptoms and rashes) and my ANA is now borderline. It just seems... so... AGH. Like my body is just messing with me.

It's frustrating to me because my doc just prescribes me seemingly meaningless things. Right now I'm on tramadol (opioid) for pain... but it's not helping very much--especially with my hands (it does nothing for swelling and little for pain...)

I just feel so... alone. Like, I just have to keep getting worse and worse. My doctor told me today he didn't want to send me to the rheumy again because it would be a waste of time. eh.

I guess I'll call him. Again. And see if I can get something else for the pain. I can't sleep sometimes because of it.

I just feel so sad. I don't want to have lupus... I just want to have some kind of... diagnosis or answer or... something to explain all of these symptoms and pain. It's almost like no one believes me because nothing shows up on an x-ray and my blood work is "borderline"...

I'm sitting here crying. What do I do?

I know, I'm probably frustrating here too. I guess I just have to suck it up.

 

[Katharine]

Hi Sheer,

Just reading between the lines here, I'm thinking that your GP is maybe the one that needs changing and not the rheumy...or maybe both.

Was the rheumy helpful or not? Did he take you seriously? Did he say anything about seeing you again?

I wouldn't let a GP decide that the rheumy seeing me would be a waste of time. He is not specialised in such things and simply handing out painkilers that are having little or no effect is far more a waste of time

It's sometimes hard to make the decision to change GP but sometimes very good to do so. Fresh face, someone who might listen...I used to have an excellent GP, renowned in our area but, at one stage, when I was feeling very bad, I asked him to run some basic tests in light of my Mum's hashimotos and polymyositis. He turned to me and said "so, because your Mum has that, you think you do". I never went back to him despite having been happy with him for years. Recently I saw him again (he was the on call doc) and when he heard I had lupus/polymyositis as well as hashimotos, you should have seen his face! He was suddenly terribly nice to me.

DO try and see that rheumy again - a year is like AGES!!! In the meantime make sure you take pictures of those swollen joints and any rashes that you might have to be able to show the rheumy when you do see him as they're notorious for disappearing just when you have an appointment.

Please don't think you just have to accept the pain, you don't! Whatever it is that is wrong needs seeing to.

Katharine

 

[LolaLola]

Dear Sheer,
I am sorry you feel so bad. The more enlightened Doctors realise that blood work is only one part of a very large picture.
x Lola

Are you in US or UK?

 

[sjink]

Dear Sheer

I am so sorry you are having such a difficult and painful time of it.
Is there another GP you can see to discuss pain medication and treatment? Or can you bypass him/her and go to the rheumy direct? After a year it would be reasonable to see him/her again I think.

Not being able to sleep because of the pain, and crying because you feel so ill means that you do need some more help and support through all of this. At the same time I think crying is something completely natural when things feel so awful.

Tramadol is not the only drug for pain and also what suits some people does not suit others. Also it can make you nauseous - do you think it started with the tramadol?

I am sending you some internet tissues to help mop those tears up and a gentle hug :hugbetter:

Love
Sara

 

[KarolH]

Just reading between the lines here, I'm thinking that your GP is maybe the one that needs changing and not the rheumy...or maybe both.

Ditto. I would run fast and find doctors that want to work with you not against you. They are out there and when you find them you never let them go.

Good luck.:wink2:

 

[halfpintfl]

:wink2:Hi Sheer, I know exactly how you feel, and I am very sorry
that you are in so much pain. If it were me, If you like your GP, then keep him, but tell him how baldly this is effecting your daily life. Ask him to referr you to a good Rheumy. Get and appointment a.s.a.p. A good Rheumy will know that he can't diagnose you by bloods alone. A
diagnosis comes from bloods, which are a guideline, what
he observes while you two are talking your skin color and what you tell him. Begin making a list of your symptoms.
A good Rheumy will probably, after a few visits, put you on something until he is satisfied enough to give you a diagnosis. They don't call Lupus > The disease of 1,000 faces> for nothing. I wish you the best.:wink2:

 

[Sheer]

Thank you ALL so much for replying.

I've been having a really hard time with this lately. I just feel so... sore. I did call my dr and tell him just how bad it was all affecting me. He put me on celebrex (an NSAID) and vicodin (hydrocodone--narcotic). So.. they're helping a little. I just literally feel like I was hit by a truck. He also said that the nausea is probably just all part and parcel of it since i quite often experience it.

But, being able to come here and talk about it and get such kind replies made me feel so much better! Thank you. I know it might take a long time, but it's refreshing to have people who understand to talk to.

 

[cemc]

I can really only add about the coeliac stuff. I too am in the same position with multiple other symptoms (including a fairly obvious malar rash) but only a 1:40 ANA.

When I first went on a strict gluten free diet, my gut did improve dramatically, but I soon found I was deteriorating again. I checked my diet and there was really no chance of getting gluten in it, and also my blood tests suggested that I was actually gluten free (antiendomysial antibodies had returned to normal). The only thing that had changed was that I had increased my intake of maize/corn products quite a lot. After a lot of trial and error and experimenting with diet, I discovered that in fact I was also sensitive to corn. Cutting that out made a bit improvement. I now maintain a gluten free, maize/corn free diet, and for many years that helped a lot too. I don't think it cured anything, but it delayed problems. 10 years down the track I am having increasing gastro problems again. My feeling is that is is something autoimmune, but it is so difficult to get anyone to take it seriously. I'm being treated by GP as if it was gastroparesis (I take metoclopramide before meals, which I think is called Reglan in US?) and that helps. I'm also still fighting for further rheumatology assessment and will be seeing a rheumatologist again in a couple of months hopefully. My ANA went from being negative, to being slightly positive (1:40 nucleolar/speckled), and I guess I'm hoping that if it gets tested again it will be more positive.

Hang in there, and do try and at least get annual checks of the ANA and perhaps other blood tests. There seem to be many people on these boards who had negative tests for years before finally showing positive.