Out in Lupus Limbo

[Blessedbe]

Hi, Everyone! :hello: This is my first time to find this site and I have a feeling I am going to be very blessed by it. My main problem right now is I am not sure if I have Lupus or not. I was feeling really terrible. Cold, So very very tired, did not care to eat, dry eyes. Went to the doctor sure that I had thyroid problems (run in my family and has similar symptoms). The my GP concurred and we were both shocked when the test came back clean. He did not give up on looking (though he did start treating me for depression,which I felt was only related to how I felt but not the cause of how I was feeling). He had me in his office for the results and said my SED rate was high but nothing else showed. I left depressed that I had no answer but relieved it was not something horrible only to get a phone call a few days later telling me that the ANA was not included in the results he had when I was in his office and that I have Lupus and should see a rheumy. The rhuemy said it was not Lupus,I did not have enough symptoms. He did more blood work and said it was something else (sorry can't remember the name- have a good bit of forgetfulness) Yes...spondylitis. I was fine with that, started his treatment of naproxen and pamelor and I felt good for a while. Now I am having joint pain, fatigue, severe stomach cramps, depression and a bunch of other things that make me think that Lupus might have been correct in the first place. What do you all think??? From what I have read it can come on quite gradually.
I know my husband just thinks I am being lazy and I almost wish it were that easy. I am scared I will have no support from him if it is Lupus. That would be crushing after all of the things he has been through medically that I have nursed him through. I guess I will have to wait and see and pray for the best!
I realize this is a book but I don't want to burden my parents and like I said hubby is not there for me yet. It is good to get it out. God Bless the person who started this site and all of you that are supporting each other through these trials! :halo:

[Clare.T]

Welcome to the site !

There are a few people here with lupus and AS.
I just read up about AS and was interested to see that it can have other systemic symptoms and also linked with other diseases like IBS/Crohn's

http://www.medicinenet.com/ankylosing_spondylitis/page4.htm

I suppose it might be quite hard to distinguish between the two if there is nothing specific for lupus.

If these meds aren't helping enough you need to get back to him in any case - maybe there are now definite signs of lupus too.

There are many other medicines that can be used for AS - some are used for lupus too such as Methotrexate but others aren't often used for lupus because they might worsen it.

Let us know how you get on and good luck - I hope you'll get some answers soon

Bye for now

Clare

[helloos]

blesedbi, it sounds like hard to distinguish too. I have not been diagnosed completely yet, although they suspect . Just went to rhemo on monday, after months of cancer docs to rule out, infectious disease to rule out, now rhemo who said sounds like lupus but blood work was borderline. I have not started any meds and have motteling under skin, pain, fatigue, fever. Feel like c*#p. Want to cry. So, I understand your discouragement. It is very frustrating. I wish a diagnosis can be made and stuck too. Maybe they do need to re-evalute you. Do you have a follow up visit and/or any meds to take to help you?

hugs hugs hugs

[brown_paper_bag]

I'm sorry to hear you're feeling so awful. :nono: Depression is one of the most difficult parts of all this...especially when you're not sure what you have in the first place! I feel for you. There is a good book "New Hope for People with Lupus" which my family and I found very helpful. If it IS Lupus (or even if you strongly suspect it is), perhaps you could have your husband read it so that he can get a better idea of just what you're going through. I sympathize with you. Hang in there and remember there ARE people who understand! :hugbetter:

[Clare.T]

I think that book is first rate too and highly recommend it. Joanne, founder and owner of this website, is a contributor.

If you get it through this site you will contribute to the upkeep of the site :thumbs:

See
http://www.uklupus.co.uk/bn19.html

Cheers

Clare