Not confirmed Lupus yet

Hi, I haven't been officially diagnosed yet but tested positive in ANA blood test. Almost two years ago, I was having extreme exhaustion which doctor claimed it was probably sleep apnea. My body was hurting and aching and he said it was probably because my thyroid levels were off and my synthroid dosage needed to be lowered. I had a rash on the inside of my elbow area that was not going away for a few months and bad headache. Headache he said was allergies and gave me flonase. Rash he said to put cortisone 10. Even with all these symptoms and positive blood test, he did not put it all together. This past end of March we found out my brother had cancer and he passed away June first. I think that is what triggered Lupus flare. Middle of April I all of a sudden got floaters and blurry vision. Finally went to optometrist when it still had not cleared up in September. She said I had a lot of inflammation and possible retina detachment which turned out to be just the bad inflammation not detachment. I explained to her, ophthalmologist, and retina specialist about the positive blood test result and they all believe it is Lupus causing the Uveitis. I am on prednisolone, cyclopentolate, and AlphaganP drops in left eye while I wait for appointment with uveitis eye doctor for the inflammation. . Having a lot of pain in both wrists and extreme fatigue, headaches and emotional. Left side of my face and left arm go numb and scares me. My husband lost his job in May so we lost insurance just in time for all this to happen to me and it has been a nightmare trying to get help. Trying to find an online support group in my area and came across this one so I figured it might help even if it is not in my area. I feel very alone and feel like my husband is either in denial or doesn't believe how I feel. Sorry for the long post.


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14 Replies

  • Also, my brain feels like it is not working right and I think I am crazy at times because my body is not cooperating to what my brain wants it to do, if that makes sense. Like trying to eat dinner one evening, my food kept falling off fork as I tried to get hand to obey brain to bring fork to mouth. My feet have been hurting a lot too. I feel like I am just full of complaints here, sorry.

  • Welcome AC. You have definitely come to the right place. We are a caring bunch and you will receive loads of advice, tips and virtual from the community. I am sure someone will know where your nearest support group is If you tell which area you live someone will know where there is a support group within travelling distance.

    I am so sorry to hear of the bad time you are having with everything. No wonder you are having such a bad flare!!!!

    Has your GP tried to on a course of Prednisolone? If the pain is from autoimmune disease steroids usually calm this down. Just check with GP.

    I totally sympathise with you for your bereavement, the grief you must be going through and as you say, your husband may be in denial. I think this condition is a very complex one to understand especially for you who is going through the symptoms. Take your h to your next GP/hosp appointment. If the doctor explains what is happening to you he will probably b e a bit more sympathetic.

    Do let us know how you get on in the future. and Good Luck.

    Lots of gentle virtual hugs just to keep you going.

    Babs x

  • Good you have joined HealthUnlocked. There are also several Lupus groups on Facebook. It is very very helpful to share with other Lupus people what you are going through, as well as to read and learn about them. Somehow it makes you feel better to know that you 're not alone, just you and Lupus. Emotions play a key role in Lupus. And they are the trigger. It is very sad what you are going through but it is important too to learn how to deal with it as your Lupus will depend on this.

    Keep strong :) best of luck.

    +13 years with Lupus. It is not easy but life is worth it :)

  • Thank you. I have been reading the posts here and many are what I am or have experienced too. It helps to have others who actually understand what we are going through and we can encourage each other. My daughter is pregnant with twin boys so we will be having our first grand babies in February! We are very excited and it gives me something to make me want to fight to get netter for instead of giving in to this nasty illness. My husband has been my driver and was with me when the retina specialist said he suspected it was Lupus causing the eye inflammation. He is concerned with me about going blind like originally I was told. We were both worried so he does understand some and tries to cheer me up. He has been a great help but as far as the aching and exhaustion, he sometimes acts like he doesn't really believe it is as bad as I say it is. He says I need to get out of the house and move around and it does help sometimes but other times I have no energy to move and my head hurts so bad and my eyes are very sensitive to light. We live in Texas so it is very sunny and hot so sun bothers me too. I wear shades sometimes even in the house to watch tv because my eyes hurt. I really am glad I found this group and it is helping me so much, thank you all for being there for me!

  • Hi ac489

    So sorry to read of all your tough problems. You've got a lot to cope with so no wonder your flaring!. You need a referral to a Rheumatologist with your symptoms. Whilst ANA is not a definitive diagnosis in itself it does show that there's something wrong with your immune system and you need more specialist blood tests.

    I know you may not have insurance as your husband lost his job. Are there schemes to help in US?. Has he found another job?. Very tough for you both but lovely that your daughter is having twins in Feb. Silver lining!. Hope things improve for you soon. X

  • My husband was in a car accident and was put on his long term disability so that is why he lost his job. We are hoping doctor releases him soon and maybe get his job back because the disability only pays till November. Since he is getting the disability check we didn't qualify for medical help. I don't have insurance and we don't even have enough to pay our bills with what we get so can not afford a rheumatolodist. I wish we could afford it so I could get on medication to help with symptoms but it took a lot to pay optometrist and eye specialists. I am just doing eye drops and motrin (for pain) for now and have an appointment with Uveitis specialist on December 7th.

  • Hi AC,

    Feeling for you and recognise these symptoms. Your history sounds very similar. It takes a while but someone eventually manages to put the pieces together. It also takes a while to get the treatment working for you and most importantly for you to come to terms with the changes.

    I see a rheumatologist and she has been fab. I don't have a specific diagnosis but she started with steroid injections and put me on hydroxychloriquine. This improved things but like you I had body aches, the feet hurt so much I could hardly walk far etc

    Everyone is different some cope with one treatment that others react to but for a lot of us it gets this wolf under control. It's no blinking butterfly that's for sure.

    Sorry to hear about your husbands job it must be a worry.

    We complain so much about the NHS in this country but hell it's so worth keeping no worries about paying enough insurance to cover the costs of treatment etc.

    Take care, thoughts are with you

  • I found a good lupus site online called Molly's Fund. Goes into detail about lupus testing. It basically comes down to irregardless of test results, if a doctor is willing to put you on Lupus meds and the symptoms go away, what are we to conclude or dispute?

  • Thank you, I will check it out

  • If your opthamologist is sure your retinas are ok, can you buy hydroxychloroquine over internet?? It's only an antimalarial after all and really safe. If you can't get the bloods done and see the specialists (would be useful to have a diagnosis) its maybe time to try and treat yourself.... Like said above, if you improve it almost proves a diagnosis...

    And completely cover yourself in Factor 50 sunblock when you go out, and good uva/b filter glasses . even the watery sum in England makes me ill!

  • I need a prescription for it. I try to stay out of the sun now because it does hurt my eyes. We usually go to store early and try to be back before sun gets too bright and hot or we wait till evening. We joke about me being on a vampire schedule lol

  • People buy meds over internet all the time. I don't think it's illegal unless they are controlled items, like sleeping tablets and pain relief, but best to check in America.

    I have had to start wearing factor 50 indoors under artificial light. Just because they haven't said you have SLE doesn't mean you don't have it, if you look after yourself as though you have SLE then you might save yourself a fortune in rheum bills if you are lucky and your symptoms settle.

  • ok, I will check into finding the meds online. I also wear shades when we go somewhere with artificial lights. The lights just seem so bright. I just with this Lupus stuff and feel so overwhelmed at times and don't know how people can live like this for years and stay positive. It makes me get depressed but I know I must avoid stress so try to put it out of my mind. Hard because I used to read a lot but my eyes keep me from reading very much now and pain in hands and wrists keep me from sewing or crocheting much or doing puzzles which I used to enjoy too. Just do a little here and there now to pass the day hoping I can go into remission soon.

  • had a read through Molly's Fund. Some really helpful info . Thanks for recommendation

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