View Full Version : Need advice PLEASE. Feeling desperate
10-10-2007, 10:54 PM
My name is Melissa. Im 37 and I was diagnosed with Antiphosphoipid syndrome, raynauds, along with the possibility of Lupus, 5 years ago. I was so sick I felt like I was dying. I had all the symptoms of Lupus but a negative ANA. I had an extremely high phospholipid count. I was put on Plaquenil and my Phospholipid numbers went down. I felt like a new person. Now, I am having what feels like a severe flare up. I am SO SICK again and have all the same terrible symptoms I had before. I have almost every symptom except the malar rash. I was on prednisone for a week and I felt a bit better but not "well". I got my blood work done (before the pred) and just got it back. It was NORMAL. Nothing was elevated except for a slight elevated red blood count and a low white blood count (dr. said it was not a big deal). My rheumatologist said that I cannot possibly be in a flare up or my blood work would show it. Is this true???? Can I be having a flare up and have normal blood counts? Should I insist on starting the plaquenil again? My dr. wants me to see a neurologist as I have signs of neuropathy but I don't see how neuropathy can make me feel as sick as I did when I was in an active auto-immune flare up before. I have been sick now for 3 weeks. I have fever's everyday. I know this is a flare up but I can't convince my doctor of it. I have a 2 year old and am feeling so depressed that I don't feel well. Does anyone have any advice for me?
Thank you to anyone who answers,
10-10-2007, 10:58 PM
I have read that even though your blood work comes back normal, you can still have lupus or a flare up of it. I have even read how some people feel terrible, but their blood work comes back normal, but while when they feel well, their blood work comes back abnormal. I guess that's one of the things that makes it very tricky. I would suggest maybe getting a second opinion from another rheumatologist. Good luck and I hope you feel better!
10-11-2007, 06:33 AM
First of all, I understand your frustration. It is hard isn't it and I am so sorry you are on the merry-go-round of who, what, how come and why?
I would think regardless of having a diagnosis your symptoms should be treated until they can accurately diagnose you. I sometimes believe doctors don't realize how we need a specific diagnose, which leads to our frustration and stress. With that in mind, I am sure doctors refrain from giving such a precise diagnosis becauses they really are not sure either. Nevertheless your symptoms should not go untreated.
What is your flare like? Everyones symptoms are different and maybe someone can suggest how to help minimize your symptoms. Continue to seek medical attention, see the neurologist and etc. Even though you don't have that "diagnose" treat, care for yourself as if you do. Eliminate the stress, stop fretting over an accurate diagnose, eat an anti-inflammation diet, light exercise, proper sleep. Joint pain? Use water therapy, hot and cold packs. Pain medication? Wear sunscreen...and etc.
And I have read you can have a negative ANA and still have Lupus.
How long were you on the Plaquenil? And why did they take you off?
Creat a journal of all our symptoms, when they happen..regardless how small they seem to you. Every detail can lead to a proper diagnose. Keep track when you feel worse, and what seems to have caused it. This can help you too to avoid the things that aggravate it and also a great tool for a doctor.
Most important, stop stressing over a diagnose it only makes it worse. I am learning too not to stress over life.
Hope this helps a bit. Post often, ask...someone here will always help in all ways that we need. Understanding, knowledge, health care suggestions, ideas on how to live with a chronic disease and a family life with children easier and guidance through the medical maze....
Breathe in deep and exhale slowly.
10-11-2007, 09:41 AM
Maybe I should make it clear that I have APS (antiphospholipid syndrome) which is usually secondary to Lupus (I hope you all have been tested for it). It causes illness, heart attacks, strokes & blood clots. Most young women die from this disease without even knowing they have it. BUT, a large amount of Lupus patients have the high phospholipids in their blood. So, 5 years ago I was deathly ill. I had extremely high phopho count, hence, the auto-immune disease. I was put on plaquenil and plavix and got better.
I have had flare ups before but the week of Prednisone therapy helped me. Now I am extemely sick again with all the same symptoms... fatigue, fever, sores in my norse, nausea, flu-like symptoms, sun sensitivity, feeling worse on exhurtion, joint pain, etc. I have been like this for 3 weeks now. I was much sicker, 3 days prior to my period and thought maybe that was the problem. NOPE. The pred. didn't completly help me this time and my blood counts were NRMAL. My rheumatologist said I am NOT having a flare up or my blood work would show it. I don't need a Lupus diagnosis, I know I have APS (a similar auto-immune disease). My main question was can you be in a flare up with negative blood work? I want to start the plaquenil again. I can't live like this. Doctors somehow seem to think that if your bloodwork doesn't show anything then it is all in your head.
Thank you for all your wonderful advice. I look forward to speaking with you all more.
10-11-2007, 10:18 AM
The short...95-98% of persons with lupus have a positive test for ANA. Therefore, less than 5% of people can have a negative ANA test, and still have lupus. A person can have a positive ANA and not have Lupus. So, yes, you can be in a flare and be negative.
I am not so familar with APS but this is what I found ...
Hughes (antiphospholipid) syndrome is mainly seen among patients with systemic lupus erythematosus (SLE). This has been called 'secondary' in contrast to 'primary' where no obvious underlying disease is detectable.....secondary Hughes syndrome can occur in several settings other than SLE or SLE-like illness.
Common autoimmune or rheumatic diseases and the percentage of affected patients with aPL antibodies
SLE - 25-50%
Sjögren syndrome - 42%
Rheumatoid arthritis - 33%
Autoimmune thrombocytopenic purpura - 30%
Autoimmune hemolytic anemia - Unknown
Psoriatic arthritis - 28%
Systemic sclerosis - 25%
Mixed connective-tissue disease - 22%
Polymyalgia rheumatica or giant cell arteritis - 20%
Behçet syndrome - 20%
So, APS can occur in patients without evidence of any definable associated disease or in association with SLE or another rheumatic or autoimmune disorder, eh? I am probaby confused, confusing....d'oh.
Why won't they prescribe Plaquenil? I would think you don't have to have a positve ANA to be on Plaquenil. They should be treating the symptoms and not the diagnose from my understanding.
If a doctor thinks it is all in your head, seek a second opinion. They're ones who do listen, and know it isn't in your head. Ask your PCP to suggest a rheumatologist. Go to a hospital and ask if they can refer one...Research online, in your area to see who specializes in Lupus. Many rheumatologist only treat the elderly for RA, OA and not so much in Lupus I am finding out.
Maybe someone else will chime in. Saysusie may give you a clearer answer, she has a wealth of info.
I wish I could be of more help...sigh.
10-12-2007, 06:25 AM
Great info from Oluwa (of course!)
As far as those dang flares? I usually feel WORST when my bloodwork looks the BEST. :?
Both of my docs (primary and rheumy) say they listen to what their lupus patients SAY rather than what the tests say, for the most part.
Gentle hugs and hopes for a better day today -
10-12-2007, 10:06 AM
Thank you. My rheumy is putting me back on the plaquenil. Im so glad that I didn't have to fight with him about it. Also, does anyone with Lupus follow a raw diet? Im sick of felling ill and I need to get my body healthy. I am seriously underweight and a vegetarian. Any good books to read for a good anti-inflamatory healthy diet?
10-12-2007, 10:32 AM
You're very welcome.
That is great Melissa that you are on your way to feeling better. Here is to Plaquenil..cheers. :drinking:
Are you a vegan or a vegetarian?
Perricone has a anti-inflammatory book out there. There is the Omega Diet. The Zone. Both anti-inflammatory. All highly recommended. They all contain fish, chicken, beans as a source of protein and dairy, eggs too.
Those are classified as weight loss books, but I am sure you can modify them by adding calories, in larger portions, or more frequent recommended snacks. Or just to get ideas what are actually anti-inflammatory foods. Rule of thumb, bright colors fruit and vegetables, salmon, sardines, olive oil, canola oil, nuts, flaxseed ground, avocados, oats...
Raw foods can be hard on the system, especially if you have issues with the digestive track, upper or lower. Do you steam, poach, grill?
So, there ya have at..hope it puts you in the right direction.
10-12-2007, 10:40 AM
How are you doing today?
I read alot, from books..listen and learn from others, my Mum taught me alot about self care, being a woman and my personal experience. The more I read, the older I get, I realize how little I really know. Gosh, there is so much out there to learn.
If I wasn't sick, I would like to experience it all. Despite having my funk, before it took me down I did do alot, had seen alot, met many wonderful people..sometimes more than someone else would in their life time. I am very grateful for that. I am still blessed..I can see, feel, smell, hear and taste the world if even I don't venture too far. And too, of course a page turned in a book.
Enjoy the weekend...
10-12-2007, 01:43 PM
I am a vegetarian, not vegan. I do eat fish. Are you saying that bright colored fruits/veggies, nuts, etc. are good for a Lupus diet?
You are right, I do have digestive problems am are worried that raw veggies will make me sick. But, I hear that it is SO HEALTHY that I am wondering if it is worth being sick to be healthy. LOL.
Thanks for your support and info. It is SO APPRECIATED!
10-12-2007, 02:56 PM
You are much welcome...
I don't think there is a such a thing as a Lupus Diet, but to eat things that may not contribute to inflammation, yes..from my research. Items I listed in my other post. Lower fat regime. Proven, I don't know, studied, yes. I do know when I don't eat clean I don't feel too swell.
Me, I eat my vegetables steamed or blanched. I believe they still retain almost all of their vitamins and minerals. If not, it is too rough on my stomach to eat daily. There are others who would say cooked food is harder to digest.
I do admit, chumping on carrots, rutabaggies, broccoli raw while preparing. But for me I wouldn't couldn't eat a complete raw vegetable diet.
I would think a continuous raw food diet, may create bowel irritation in some form.
Moderation in nuts..too much fat consumed otherwise. Handful is plenty a day. Almonds, pumpkin seeds, ground flaxseed tablespoon..walnuts. Peanuts, pass.
Fruits, pompegranates, grapes, berries, apples, pears, ruby grapefruit (unless you are on anit-seizure meds), plums...food like that.
I would just keep in mind, avoid, additives, preservatives, food dye...sugar..and avoid too much red meat if you do decide to be a flesh eater.
I am not the healthiest myself. I am 25 lbs. overweight put that on after dosing with scaryroids. Sedentary lifestyle due to the heavy load Lupus is. Perimenopause too. So, I too am trying to adjust. I always ate pretty healthy as a whole, but I have to change up something. Add more exercise or lower my calories even further. I am not ready for either. My attempts haven't been good enough to make a difference.
I am hoping Lupus will turn around and give me a break so I can get myself back on track to so I can be a physically fit self . I know I probably will never be 110 again, but I could handle 120...135 for me is too heavy as I am only 5'3". I lose 5, gain it back...
When I was at the doctors the other day, the nurse asked me if I wanted to take my shoes off and rest my purse before she weighed me. I replied, Why? I am fat. What's another few more pounds, a lower number isn't going to make me feel thin nor a higher going to make me feel fatter. A few years I would have said different. And mentally I would have calculated the weight of my clothes to mentally subtract. Weird I had an ED.
Pop into the library or a Barnes & Noble...a book store an skim the contents of those books I mentioned..maybe one would be right for you.
The weekend begins now..enjoy,
10-12-2007, 04:19 PM
Oluwa, you are the book of knowledge! Thanks for all the info. I am picking up my plaquenil today. Something that you said rang a bell. I think my doctor too primarily deals with older patients with RA. I have been seeing him for 6 years now and since he has put me back on my meds. I will stick with him. I have a fear of going to another rheumy and them telling me that there is nothing wrong with me and my blood work is just a flooke. I have had some bad experiences with doctors. I had a mass in my chest for 7 years prior to Melanoma cancer. The STUPID radiologists NEVER saw the mass. Then, on a routine x-ray I found out that I had a mass (thymoma) which had to be removed with open chest/heart surgery. My nightmare of APS/Lupus happened after the HORRIBLE surgery/recovery. That is just one of several mis-interpritted tests I have had in the past. So, I have doctor phobia.
Have a great weekend and thank you again. PS- I look disgustingly skinny so its not always a good thing to loose weight. At least with you, g-d forbid something healthwise happens to you, your body has fat to live on.
10-16-2007, 12:16 PM
I enjoyed your words..chuckling..
At least with you, g-d forbid something healthwise happens to you, your body has fat to live on. I'll share my fat if I could. Will 10 pounds do?
I am so sorry you had to go through so much. How is your skin cancer today? Did you have to have your Thymus removed too?
I know your apprehension with doctors, wrong diagnoses and etc. I went through the spin with my first back surgery. I lost faith, but I still jump back on the merry-go-round for another spin. Sometimes I've only had to take it around once. What keeps me going is..saying..wow, this could be the day. I could just feel better...with such great hope. I get let down too, but faith and hope keeps me going.
I did indeed have a good weekend. Purchased plants galore..now who is going to put them in. Maybe my husband this coming weekend when he flies in..or perhaps I will have to hire out. Ah, if it was a plant or two I would do it but I have over a dozen trees and shrubs. Sounds exhausting just typing it.
Have you decide what type of nutritional program to follow? How has you week been thus far?
And you're welcome...I'm happy I can help in a small way.
10-16-2007, 03:25 PM
I hope you didn't take offense to what I said about the weight :( . It was said with love "). I would gladly take 10lbs from you!
As for the Melanoma cancer......Thank g-d I am a survivor and have not had any metastasis (knock on wood). Not sure if I mentioned that the only reason why I found I had melanoma cancer was because of a close friend having it, who eventually died from it (leaving behind a one month old baby). Yes, my thymus was removed and was found to be a THYMOMA, which can turn to cancer alot of the time (is often times found in people with auto-immune disease). I like to think I have an angel watching over me and protecting me.
My weekend was uneventful as Im still not feeling great. We live on 5 acres with about 30 animals. I find solice alot of times just spending time with my animals. It always makes me feel better. Is your husband a pilot? Maybe you should hire someone to plant for you that way you can spend quality time with your husband. Just a thought. So, you had back surgery? That must have been rough. Do you think that is why you got Lupus? Maybe from the stress on your body after the surgery?
Not sure what diet Im going to go on yet. I have NO APPETITE which makes it even harder to want to eat. I know that I need food for fuel and I HAVE TO start eating healthy for my baby. He NEEDS to have a healthy mommy!
Thank you for your concern. Its hard to find people who understand what it feels like to not feel well sometimes. Im lucky that my hubby understands but the rest of my family doesn't get it.
10-16-2007, 04:21 PM
No offense was taken. I was laughing and out loud too.
My husband is a Computer Architect. Traveling or working from home. Depends on the project and with whom. If it is a project with Boeing..away. With say Jones Of New York, Proctor and Gamble...50% here and the other there.
What kind of animals? I have a Jack Russell and a miscellaneous cat and fat at that. I tried to help her lose weight. Even put here litter box upstairs. Nothing. It is just her the vets say. Prescription food, not budging.
I had three back surgeries. Two lumbar and one cervical. The last, cervical..sent me into a mammoth flare. I believe I had Lupus in my life for quite some time, before the surgeries. Symptoms spread out over the years before coming to a head. Cumulative. Things like rashes, dermatitis, cosmetic allergies, hives, nose ulcers, arthritis..bouts of fatigue, then waning for years..treating those as typical medical woes, without thinking an auto-immune disease. Taking Vioxx, topical creams and etc. Even thought it was early peri-menopause.
One day the face rash never went away, two by two my joints cried, then the muscles..then down for the count..exhaustion. Unable to hold a toothbrush or walk. You know how it is...so here I am.
I stumbled into this forum, as I was looking for answers to help me out of my mental and physical anguish. Desperate...anything.
I have learned flare or no flare always treat yourself with care and make sure you always have a reserve. Just because I feel well enough I can't run myself ragged. Since learning that here and through my reads I am doing so much better. And being able to read and relate with others just like us. Different symptoms, but we all want to be understood and also I learn to be understanding of those who don't have Lupus by understanding why they don't get it.
You are a survivor ..being through so much. Hugs. My Mum had lung cancer, it metastasized and my Mum died. I miss her. I wasn't done learning. She died when I was 33.
You are welcome and thank you for sharing your words, thoughts with me...
Enjoy your dreams,