[CleoUSA]

Hi everyone,

I'm new to the site - live in Fort Worth, TX and am in my mid-thirties I've made one or two posts to other existing strings already this week before realizing about this string where I could introduce myself.

I've been suffering mysterious symptoms for nearly 5 years before just last week being diagnosed with connective tissue disorder, most probably lupus, (after first being diagnosed with gastroparesis). My symptoms over the years have been this: awful leg pain, stomach pain, joint pain, stiffness, numbness in legs, hands feet, pain in fingertips, extreme fatigue, insomnia, night sweats, shortness of breath, bone pain, a sensation of internal trembling and twitching which is is REALLY scary, and most recently dry eyes -they burn! The symptoms DO come and go - I've had long periods where I feel better with the exception of some achiness, but then they come back all of a sudden with a vengeance and literally knock me off my feet. When it comes on, I'm down with it for months and months and months before it ebbs away again.

I've never had a rash of any sort. Have most you had the malar rash? Me NOT having that seemed to be the main hangup as to why the doc didn't want to say 100% positive on lupus.

I'm very curious to read on this site about the brain fog. I've been telling my friends for nearly 2 years that I am sure I must be getting Alzheimer's because I will literally FEEL the block in my brain -I'm trying to think of a word and I know what I mean but can't find the word or phrase. I've always had an excellent memory and this has been very frustrating to develop this weird symptom.

Also, I'm not sure how to give my ANA results but 2 years ago it said 51, which was normal. After the gastroparesis diagnosis, the GI doc gave me another one and it was 110 - which was listed as equivocal. It said 100 or below was normal and 120 or higher was positive, so this is borderline I guess. I understand this test isn't always reliable or sometimes gives false positives.

On bad days, the bone pain is really debilitating. I'm sure it's probably actually joint pain or maybe vasculitis, but to me it feels like my bones just ache. Sleep is my only escape, and I don't even sleep well unless I take ambien.

Does anyone else ever feel like they experience bone pain?

One last question -is there anywhere on this site where people list their initial experiences and symptoms which eventually led to the lupus diagnosis? That would be really helpful to read the history from others who have a definitive diagnosis if that exists on this site.

They've started me on plaquenil and i go back in February for a followup. I started it Saturday and so far no side effects that I can tell... I realize it will be awhile before I can tell if it helps - or so I've read.

Thanks to alll of you for being there.

 

[Clare.T]

Welcome to the site Cleo although I am sorry about your diagnosis and that it took so long.

The type of ANA test you refer to is called ANA direct, although I haven't heard anything about it being less reliable. I don't know why some doctors prefer it to the usual sort which most of the experts still reckon to be very reliable.
Diagnosis is certainly much easier when there is some lupus specific symptom but as there are only four of them it often happens that there is none. Diagnosis is mainly careful, experienced consideration of the patient's history symptoms, examination and test results. Skin is reported as a presenting symptom 20%-30% of the time although the figure of 70% is given at some point in the course of the disease.

Most of us take Plaquenil and find it very helpful but as you say it might be several months before you are aware of any benefit. If you start having any tummy upset you can leave it a day or two until all is normal then start again at a lower dose to give your body time to adjust.
Sometimes people get a short course of Prednisone to tide them over and many people take some sort of NSAID.

We are hoping to start just such a section of the forum in the New Year, for accounts of people's journeys with lupus.
Learning to cope with lupus , making the necessary adaptations is as important as the medicines. You find a wealth of experienced support and information here to help you through to better days.


Bye for now
Clare

 

[Pink Pearl]

Hi Cleo, Welcome to this group. It is one of the most helpful boards I have found, and no one is judgmental either.
One of my initial issues with lupus was a major attack of peritonitis. At the time it hit, I also had an ovarian cyst, so was on bed rest for several weeks until it finally resolved itself with medication treatment. Before it was done, I ended up having a laparoscopy which showed a huge bundle of adhesions the size of a softball.

The next go round was a bout of pneumonitis that lasted for 3 weeks. I was tested for ana's, but was and still am, negative. The next year I had more respiratory problems with progressing sle symptoms. Major arthritis, swelling of my hands and fingers and hot-hot-hot. I developed the malar rash, positive apl, acl, anti-ds-dna, but still neg ana.
Had recurrent peritonitis, lung infections, asthma, joint problems, hands swollen and very hot, malar rash, hair loss, then developed gerd, low thyroid, sjogren's-dry mouth, dry skin, dry eyes, major photosensitivity. Major migrainous giganticus which lasted for 4 1/2 months. Only because of my doctors did I survive that last one. We finally figured out that this was also sle related and got me on a regimen of a combination of anti-seizure meds, decongestants, high antihistimine med cocktail. Added in injection/iv meds when nothing else worked.

Three years into this journey, I went into the hospital to be pulsed with solumedrol. I was also having major asthma issues with this. I was in the hospital for 10 days during which I ended up in steroid psychosis from withdrawal of the solumedrol. We then started on methotrexate to see if that would help control things. Nearly 17 years later, it has been the key to controlling lupus for me.

We all have battle stories of our journeys with this not so welcome companion. I've been blessed to have a superb team of doctors who are willing to go beyond the box when we have to. I have had to rule plaquenil out as it was a major contributor to the episodes of migrainous giganticus. To me it was not worth the joint relief that it gave, but the incapacitating migraines were no fun.

Yes, I have what I call times of "lost words". I can give the definition, how many letters are in it, what it starts with, but the word itself is out of my memory. Even if someone guesses it, it won't remain in my memory for that time period. It is very frustrating.

A diagnosis of lupus is made on the basis of meeting 4 of 11 criteria as defined by the American College of Rheumatology. Don't let yourself get hung up on someone else's definition of what it means. Trust yourself, trust your body, build a supportive team of physicians. I fired 3 other rheumatologists before I found the doctor I am with now for 16 years. I have given all my doctors permission to talk to each other with or without talking to me. It is the best way I can work with them, especially if I am in a flare and not totally "with" it.

Take care of yourself, and don't get hung up with another person's ideas of what you should be doing or not doing. We only get one go-round on this life, so make the most of it when you can, and when you can't, rest. I found keeping a journal helped me to make sense of what was going on with my health. I also took/take what I call "love notes" to my doctors with questions I have, comments on things that have been going on, updates on whether my asthma has been active, is the peritonitis pain more than usual, that sort of thing. It helps me to be able to get them current on where my health issues are. It also gives me a relief to not have to remember every single thing in that appointment time, and upset with myself if I forget anything.

Hang in there, the first couple years are hardest, in my opinion. Talk to people either online or a local support group, but don't let yourself get isolated from society. It can happen too easily.....but is hard on the social circle if it happens.
Hugs to you,
Sally

 

[CleoUSA]

thanks!

Thanks very much you guys. I really appreciate the words of encouragement. I especially am glad to hear you say that you fired several doctors before finding the rheumatologist that worked for you.

The rheumy I saw looked at me like I was some sort of insect, and was immediately unconvinced and I had to ask him to please sit down and LISTEN to my list of symptoms and just let me tell him before he writes me off. As I began relating the story, he came around and started to be interested in what I was saying, but I had already made up my mind that I wouldn't be treating with him long term - he blew it in the first 60 seconds with his demeanor. I need to have a doctor that cares about what I'm feeling and listens to what I'm going through and helps me find some direction with my lifetime course of treatment. So I'll go back for my followup in February, but I have an appointment with my primary care doc on Dec. 31 that he set specifically so I could come back and tell him how the rheumy appt went and he's wonderful, so I'll tell him I want to try someone else.

Is there any sort of resource out there where we can get referrals from other lupus patients that tell us their favorite rheumatologists in certain cities? There are about 16 of them on my insurance network that are within 10 miles of my home, so I'm going to try another one, but it sure would help if I had some comments/reviews/feedbacks from other lupus patients in this area.

 

[Joandublin]

Hi there

There is a Find A Lupus Doctor Forum here and you can either look through recommendations there or post your own thread asking for recommendations in your area. Here is a direct link to the Forum in case you have trouble funding it!

http://www.thelupussite.com/forum/forumdisplay.php?f=49

Best of luck!
Joan:rose:

 

[onetay]

Cleo,
Welcome to the site. I hope you find it helpful and educational for you. I am glad that you found the site and hope to get a chance to talk with you in the chat room soon. There are a lot of good people here and you can make many new friends that understand what you are going through.

The bone and joint pain seem to be a constant with most people with lupus I have found and yes that along with the fatigue and inablity to sleep well. No one here can tell you have lupus only a doctor can do that but it sounds like you are on the right path at least.

The posting and threads tell you a lot about the people and their problems with lupus. Many of us did not pay much attention to the early signs we had as they were passed off as something else by the medical community in the beginning. This site has been a saving factor for many of us also. I hope that you find the same support and help that I did and still do to this day and have only been here since October 08. I am so very glad that you are seeking answers for your problems and advice.

Have a wonderful holiday
Tammy

 

[SophieH]

I'm from FTW too

Hi Cleo,
My name is Sophie and I live in Euless. I can sympathize with you about the DR problem. I have been to two different rheumatologists. I am new to this site too and I am hoping to find some information and support here. Maybe together we can find a good Dr in this area and share information.

Happy New Year!

Sophie

 

[KarolH]

Hi Cleo,

Welcome to the board. A lot of us have the constant bone pain your speaking of. You are not alone with this. I am sorry your feeling so badly but hopefully you can find a good doctor and get on with feeling well.

Hope to get to know you better. Join us in the chat room sometime.:wink2:

 

[LolaLola]

Hello Cleo,
Welcome here.
x Lola

 

[SophieH]

Pink Pearl,
Your note sounds just so similar to what I am going through. I have horrible migraines, Had a car accident because of one, they tried to take my driving permit away. I am hospitalized frequently for migraines. But I have been told this has NOTHING to do with my Lupus. I think they are all related because all of the sudden my migraines became incapacitating about 5 years ago. That is also when I noticed more severe syptoms of joint and bone pain. When I can't think of a word, in two languages mind you, they say it is my Topamax that causes it.
I started out ANA negative but have since had an ANA of 380, positive antiphospholipid, + RO-SSA. I have never had the malar rash but I get a lacy rash on my legs that looks like I am mottled or cold. I have Reynauds pretty bad, since I was young early 20's.I get sores on my hands from it. Recently my doc approached my about trying methotrexate and I told him no. I was afraid. I am begining to rethink that decision after speaking with a couple of ppl on here. I just have a kidney issue to resolve first, to make sure there is no problem with the drug and my kidney problem that just came up.
I am interested to know if the methotexate helped any at all with the control of your migraines? I am also on Plaquenil 400mg and it has helped. I did not notice it making my migraines any worse though...something to consider.

Happy New Year,
Sophie

 

[CleoUSA]

well, not they are not sure

So I saw the rheumy on Dec. 10. He was very skeptical that what I have is lupus because I had no presenting factors like a rash, and my ANA was just barely positive. It was a 110 (100 or below is normal, 120 or up is positive, so they called mine equivocal, whatever that means).

He put me on Plaquenil which I started taking, but he said that while my joint pains and other strange symptoms (gastroparesis, shortness of breath, sense of internal trembling, extreme fatigue, insomnia, feeling of weakness, leg pain) MIGHT indicate a UCT disorder of some type, he wasn't entirely convinced, so just try this med and come back in February.

Then my primrary care doc called me into his office in late December. He had some blood tests back that I had done in early December, just before I visited the rheumy. This time the ANA was well in normal range. He had also given me the anti-DNA test and a Sjogren's sydrome blood test and a rhematoid factor blood test. All negative. The primary care doc is pretty sure based on this that lupus is not the causative factor. Also the plaquenil seemed to be making me itch all over, so he told me to stop taking it.

So now I'm not sure where I stand. I'm going to a seminar here on Tuesday at a local Fibromyalgia and Fatigue Center and might see a doc there to see if my problems could possibly be CFS.

It's very frustrating not to have a diagnosis. Going on 5 years and they still can't tell me for sure what's wrong with me.

 

[pollianna]

Hi Cleo, I am new here too. I get the bone pain. My knees are always kiilling me then this pain travels up my leg and the hips kill but they don't burn like my knees. My elbow bones hurt like mad and the feet too.

I had 8 years of "normal" blood tests but the lupus was there lurking. I was diagnosed with fibro and CFS in 2001 even tho i couldn't use my legs properly but I know now it was Lupus then. I went to the GP in April and was in flare but they didn't take the blood until a few days later and it all came back normal, no sign at all of any immunity problems, as they did the last 8 yrs lol, sooo frustrating. Just a couple of months later the Lupus unit found overactivity in my immune system.

Could it be that you are showing negative when your flare is in remission?. Would your doctors be prepared to test you when you are in a flare? Then at least you will feel better in yourself. it's the hardest bit not knowing I know