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Discussion Starter #1
Hello...
Where to begin?

I have been suffering ... random symptoms for several years. Pain in my hands, Raynaud's, rashes, constant costochondritis, migraines (though they're not... what I'd class as "real" migraines in that I usually don't get visuals or sensitivity to light - though my doc did say an mri revealed that I had "migraine lesions"), rashes - face (mainly my cheeks, it comes and goes and is never REALLY strong), neck, and chest usually. I have some hair loss at times. I was dx with Celiac Disease about a year and a half ago and I thought perhaps eliminating gluten would "cure" me. However, my hands still get very painful, I still get the rashes, costo, and definitely the migraines (sometimes for a week at a time).

I have had a whole battery of tests. The last time I had my ANA tested it was (according to my doctor) just below the level needed to indicate Lupus. :worried:

But, that was pretty much that. He would not resend me to the rheumy (who I saw once and who was rather mean).

Lately I've had vertical pink ridges appear on my finger nails and they have gone pretty white underneath (especially noticeable in my thumbs which have the white half moon, a dark pink aura around that then white). I've also pretty much lost the use of my right index finger due to some kind of small lump right at the last joint that can get very painful, but also prevents me from grasping with that finger. My Dr just kind of shrugged his shoulders and brushed it off.

I suppose these aren't my biggest concerns at the moment. Recently I've had terrible problems with my right shoulder. It's been sore for years really, off and on, but my husband said there was a "hard knot" or "lump" there when he was massaging it the other day. Lately, it's been so sore I can't do much. Then, I read that gently massaging areas affected with costochondritis can help--so I was doing that to the first couple of ribs just below my collar bone where they connect to my sternum and I noticed that on the right side is a ... lump or swelling obviously not apparent on the other side. (perhaps Teitze syndrome? But... it's not that painful to push on it... as it is with the next ribs down - ie: costochondritis pain. It more... aches)

I guess I'm scared.

After all the trouble over the past couple years with everything we had to change insurance companies (my husband changed jobs) and they wanted a HUGE amount to insure me (because of all the tests they hd done previously. The insurance co. dx me with things my doctor never did!!) So, I have naff all in the way of insurance and I'm scared to even GO to the doctor since all the previous tests have been so ... inconclusive. I can't afford to rack up medical bills right now. But, I'm also scared that I'm developing more symptoms of *something* :(

I can't sleep at night for the pain in my chest and shoulder which is making my headaches worse and my hand pain too.

I haven't told anyone else really about the pain or the 'swelling'. I kind of feel that people think I'm whining or complaining all the time, even though every day I'm in pain (some more than others) and completely exhausted. I feel so relieved to be able to write this here... it's been bottled up inside for about a week now (about the "lumps") and everything is just so overwhelming right now. I read somewhere that being dx with lupus takes on average 5 - 7 years, is that true? While I a would not dx myself with anything ever, I've been struggling with this for 2 years already. The thought of another three years before I possibly get some help is....

:(:worried::(
 

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Pamela b
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424 Posts
So sorry

Hi
I am so sorry for you that you feel so rotten and that you arer being ignored.
It seems to be a pattern and most on here ( I am very new ) seem to have had the same treatment ( or lack of it )
I have suffered various things over the past 3 years and am seeing the rheumy tomorrow (even got the day wrong, thought it was today was Friday ) and am not optamistic.
I would do what I did demand a return to a rheumy, but if the guy wasnt good ask to see someone else.
If i dont like my guy tomorrow I am going down to London even if I have to borrow the money to pay ! You only get one life and without your health what is life ?

I do hope you get some help and let us know
best wishes
Pam:
 

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Discussion Starter #3
Pam,
Thanks for your reply, and good luck with the rheumy tomorrow.

I think I might just have to borrow the money to see my Dr. and see what he recommends. The pain is so bad at the moment it's really debilitating.

I didn't really introduce myself before... I'm sorry. My mind is a fuzzy mess. I'm 35 and a mother of one boy. I was really sick during pregnancy (hyperemesis) and almost lost him. Most of these problems got worse after my boy was born.

I'm originally from the UK now living in the US. It's hard here because of insurance I think. When I lived in the UK I had a period of recurrent pharyngitis, ear infections, and various rashes that lasted almost a year and was able to receive good treatment always. Here, I have found it hard with referrals and insurance companies and have already spent thousands of dollars on the treatments I've had.

I'm worried that it might be Lupus from the things I've read--and I'm also worried that it's NOT lupus from the negative tests I've had. I feel stuck in no-mans land where everyone thinks it's in my head and refuses to take me seriously.

How do you cope with this? The waiting and the constant and changing symptoms?
 

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Hello Shufu and welcome :)

I'm sorry to hear you have been through so much these last few years :(

Some of your symptoms could be indicative of something auto-immune going on and it is certainly worth pushing for another referral back to a rheumy.

When it comes down to it, you know that there is something wrong and that is what you mustn't lose sight of. For my part I could only stand the waiting, the pain and so on if I felt I was doing something about my situation. Solutions are not always easy to find but you have to keep going back to the doc and pushing for answers.

If you do have lupus it is true that diagnosis is not always easy. It is an extremely complex disease which can mimic many others and you need to try and see a rheumy who has lots of auto-immune disease experience even if that means waiting a little longer to get in and see him.

I would also ask your GP to redo the ANA test as that is really the first basic screening test for lupus and other auto-immune diseases. That way you have something to go to the rheumy with.

Another very good idea is to start keeping a symptoms diary (it can help the doc tie things in) and also to take photos of any rashes or swellings that you get (they notoriously disappear the day you go in to see the doc). I have no idea what origin those lumps of yours may have, again they need showing to your doc.

Hope that helps a bit,
Katharine
 

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Hi Shufu... you know your body, you are not whining if you notice changes..you are being observant, but you need to let a decent Rheumy know of these developments and trust in yourself to know you need some answers sooner rather than later. Sometimes you might need to push it a bit to get something moving...there is nothing more important than your health so try and find a way to move this forward and it will be more positive if you feel a bit more in control of your future and your body....hang in there, take care and be assertive..take your partner with you!!:)
Claire X
 

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Hi, you have come to the right place. We all at one time or another felt it must be in our heads, because no one feels the way we do! I have had joint pain now for almost 10 years. It has only been the last 3 years that they have said I have latent SLE. That is as close as I think I will get to someone admitting there is problems! This is a great place to vent, and to get good advice. It is so important to talk to others who are going through the same as you. Please keep on at your doctor, you deserve to be taken seriously. Good luck xx
 
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