View Full Version : I'm New and Confused

06-08-2009, 07:30 PM
Hi! I'm Sandy. I found this forum through But You Don't Look Sick's site. I have been dealing with autoimmune issues for longer then I can seem to remember. So far, I have had the following diagnosis: IBS, Spastic Colon (I am now told these might actually be IBD), lactose intolerance, environmental/seasonal allergies, allergy to Zyrtec (causes severe Uticaria but only when it was changed to OTC), Rosacea, Shingles, Pityriasis Rosea, Diabetes Melitus, Eczema, Chronic Sinusitis, dry eye & light sensativity, gastritis. The possibility of Lupus was first suggested to me in early 05 but the blood tests came back normal (or so I was told). Over the years, I have had long bouts of wellness broken up by periods of insane sickness. Before this flare, I have been feeling the best I have in quite a long time. No I am so limited that I am barely able to maintain my lifestyle, which is quite depressing if I let it get to me. The last 3 months I have dealt with the following array of problems, headache, light sensativity, swollen ankles and calves that cause immobility and pain (which are thankfully not swollen right now), exhaustion, pain when breathing heavy or physically exerting myself, stomach pain, nausea, achy joints, and another rash (this one on my inner thighs) that I think is Shingles but the emergency care Dr said is not since it is in two sites and not one. I recently switched PCP because I was no longer satisfied with the level of care I was previously getting. I have been to multiple specialists based on whatever the primary symptoms were at the time. I was in the ER for the swollen ankles (which lasted about 7 weeks) and they ran a battery of tests but found nothing conclusive. They did an EKG, chest xray and tested for DVT. I told the ER doc that I was planning to see a rheumatologist cuz of all this and he said that is what he would recommend based on my past history of autoimmune problems. My first visit was two weeks ago. She ran a whole new set of labs and some xrays. I have a follow-up appointment on Wednesday. I know it sounds weird to say, but I am honestly hoping she says Yes, you have Lupus, you are right cause at least from there, I can move forward in a positive, light-filled way. I am so tired of remaining in the dark as to what it is that is causing my body to break down. I am also looking into changing diets to a more raw diet with juicing, since there seems to be alot of research showing positive results with autoimmune compressed people who follow these plans. Have any of you tried this and how did it work?:wacko: <~~~tired of feeling like this about my health!

06-08-2009, 08:24 PM
hi sandy,

welcome to the forum. Seeking the answer to the question "what is happening to me", is a common position of many members. It is so very difficult knowing that something is wrong, but no one seems to be able to positively identify any medical explanations. I can certainly understand why you feel that any diagnosis will be welcome, at least then you will know what is happening and why.

i do not have experience with juicing and diet, i know that some members have tried to celiac diet, and i know that some members have had different levels of success with various dieting adjustments. Hopefully someone will be along who has experience with juicing, and can answer your question.

please let us know what the dr. says on wednesday.

sick n tired
06-08-2009, 11:40 PM
Hey Sandy,

No it doesn't sound weird to want a diagnosis...for most of us it is proof that it is not all in our heads, as well as a starting point to actually do something for the problems...sadly many don't get any kind of dx for years if ever :no:...

I do think it was a step in the right direction to go to a Rheumotologist...as far as the juicing diet, I have a friend who swears by it. Maybe it will help, but be sure to run anything by your doctor...just to be safe...:yes:

06-09-2009, 05:02 AM
Just wanted to welcome you to the forum. So sorry you are struggling. Keep after it and never give up. It may take years to get a diagnosis, which can be frustrating. Keep a journal of your ailments, symptoms, etc. Try to be very specific about when things occur. Sometimes, it feels like so many things are going on, it becomes overwhelming. When we finally are able to get a doctor's attention, we spit all of this out. Many doctors hear blah blah blah and label us as hypochondriacs. It has been my experience that the more calm and informed you are when you go into an appointment, the better you are received. Treat it like a business (after all, your life is the most important business) and demand that you get the respect you deserve. If you don't, find another doctor. You will get some answers. Hang in there.

Wishing you wellness,


06-09-2009, 01:01 PM
Thank you for all your warm welcomes! It is nice to finally be surrounded by people who understand how completely frustrating it is to fight with your body all day long and not know what it is you're fighting. Pearl, I agree with you completely, my health is my business. It took me a long time to realize that I don't have to accept being mistreated by a doctor just because they have a piece of paper on their wall saying they should know more about a particular topic than me. Because of this new attitude, I am currently changing my PCP. I really liked my old doctor but he had to make some changes in his practice and I began to feel less like a person/patient when I went there and more like a number/income opportunity to him. At this point, I feel like I am paying for a service and I should be getting good service for that payment. The first meeting with the rheumy went well and I am hoping that she will become a partner in my health plan with me. I will definately let you know what the rheumy says tomorrrow. (Fingers and toes will be crossed till then). Best wishes to all.

06-09-2009, 01:46 PM
Hello Sandy:laugh:
Welcome to our family. Yes, everyone here truly understands the frustration of multiple symptoms and doctors who are bewildered. Getting a diagnosis of Lupus is a double edged blade and almost all of us here are familiar with feeling of relief coupled with the sadness of having a chronic illness. You should also know that, with your list of symptoms, you might very well be suffering from Lupus along with several other overlapping/co-existing diseases. It is not at all uncommon for those who suffer from auto-immune disorders to develop more than one auto-immune disorder. From the symptoms that you've listed, it is quite possible that you have over-lapping issues occurring.
Also, one of the things that I advocate fervently is KNOWLEDGE. It is important that you learn all that you can about your illness (or illnesses), how it affects you, what treatments are used and what to expect from them, what symptoms each illness has, what medications are used and their side effects, and, especially, how your body reacts to the illnesses. By becoming knowledgeable, you are then able to be pro-active in your health care and can insist that your doctors listen to you, take you and your symptoms seriously, and treat you and your symptoms appropriately.
We are here to help you to gain as much knowledge as you can and to help you to become pro-active with your health care team. Also, we are here to help you in any way that we can and to make sure that you know that you are not alone!!

Peace and Blessings

06-09-2009, 02:07 PM
Welcome to the site Sandy!
I am one of those members who is on home made juice/smoothies, low salt, no taste diet! Yep, my doctor cut it out...no aritificial sweetners, no processed meats, low sodium, no alfafa spouts, bean sprouts, soy beans, edamame, nuts yada yada yada! Since having bad flare ups in Nov./Dec. 2008 I moved in with my retired grandmother so I could be at home with someone when I had flare ups which happened generally at night when it was cold. My grandmother has a juicer/blender and started making home made smoothies for me every morning along with fresh fruit in my lunch, fresh veggies (green leaf) and chicken/fish/turkey for protein. Low carbs as well. Went from white rice to brown (Yuk) but my body adjusted. Recently I had an outpatient surgery and I was prescribed vicodin which you may or may not know can cause constipation so granny got out the juicer to make sure I stay regular making a spinance/carrot with a slice of apple to sweeten it up juice. LOOKS far worse that it taste and about every other day I have either the smoothie or spinanch juice. Don't know if this diet works/helps but my Lupus levels have been going down each time I go in about every 4 weeks now. I have gone from 30mg to 5 mg of pred. So hopefully it is doing something as I gotta tell you I crave salt...specifically thick cut Farmer John's bacon and I endulge with 2 pieces on the weekends for breakfast or I have japanese food with low sodium soy sauce on the weekend.
Hope this helps...again welcome to the site!

06-09-2009, 02:42 PM
I am also looking into changing diets to a more raw diet with juicing, since there seems to be alot of research showing positive results with autoimmune compressed people who follow these plans. Have any of you tried this and how did it work?:wacko: <~~~tired of feeling like this about my health!

Hi Sandy and welcome.

I also have IBS. I have to be very careful about anything new in my diet. With the juicing, I waited until I was constipated to try it to help in case "something" would go haywire.

For me, the safer route depends on what's in it. If it's mainly strawberries and/or blueberries, I seem to tolerate those okay. With veggies, there's not many I can tolerate. The veggies make my symptoms much worse. I would go slow and easy trying it. Just try a little and see how your system does with it.

06-09-2009, 04:31 PM
It is nice to meet you. It sounds from your thread that you have a lot of the symptoms of Lupus. The joint pain, the pain when breathing (pleurisy-which is common in Lupus), the severe exhaustion are all signs of Lupus.
It is surprising to me that your new rheumy has not mentioned Lupus with all of your symptoms. In researching this disease, I have found that most diagnoses are made from the presenting symptoms alone and not the test results.
Good luck in your search for an answer. I know that getting a diagnosis is important, but once the diagnosis is made it presents a whole new set of problems.
You have found a wonderful support group here, and I hope that you keep us posted!!

06-09-2009, 05:58 PM
It's so nice to meet all of you too! I am glad that you have all taken the time out of your busy days to reach out to me. Thank you!!!!
SaySusie - I have been doing ALOT of research online and thought that I had a couple of symptoms for other AI diseases, but it wasn't until recently that I realized that you can have so many at once or even that having one makes you 3x more likely to eventually have another. Between the internet and all the books I have found/were recommended, I am amazed by how little I know about Lupus or any other AI disease. I find it frightening that the "professionals" seem to know even less, with the exception being if you find one who is really actually is knowledgable. I really hope I have found that person this time.
DSunshine - I definately need to lower my sodium. Unfortunately, I like salt. :no: I changed 3 years ago from white to whole wheat pasta and rice (except for sushi or dinner out on an occasion) and now I think that white pasta is so bland and tasteless. Once day you will have a bite of white rice/pasta and realize that you actually like the whole wheat too. It just kind of happens.
Abbasgirl - good point with the IBS. I definately will need to think about that and experiment at a time when I know I am not out of house.
Purple_Butterfly - she wanted to run some tests and see if the clinical answers support her hunch. She mentioned that she was testing for Lupus and Rhuematoid Arthritis, which my chiro does not think my x-rays show. We'll see.

06-10-2009, 05:18 PM
Hey Sandy!

Trust me...it took me SIXTEEN YEARS to finally get a diagnosis, so I know that anger and frustration better than you can imagine. I never "wanted" to hear them say I have Lupus...but I was sick of fighting an invisible enemy.

Your symptoms sounds almost IDENTICAL to mine. Have that rash site on your inner thigh (I have one, too) checked for psoriasis. I had a biopsy done that confirmed that I had it. I've also got IBS (such fun...not). Has your doc tried you on Welchol? That's made a big difference for me!!

Diet changes (and adding supplements) have helped me TREMENDOUSLY. I take about 10 supplements a day, and have seen a drastic change in my Lupus. Try some of the suggestions people have given you here, and see what works for you.

Welcome to the board...am looking forward to getting to know you better!

06-10-2009, 06:21 PM
Delphinia - 16 years?!? WOW!
I think you might have hit the nail on the head. I went for my follow up to the rheumy today. She thinks I have either RA or Psoriatic Arthritis, but she's betting that it's more likely Psoriatic Arthritis (which I can not pronounce correctly) because I have/are prone to having lesions of psoriasis on the inside knuckles of my fingers, my elbows, knees, eyelids and scalp. Except for the stupid itchy rashes on my legs and eyes, I am actually feeling so much better than I have since March. Thank God! She suggested four drugs to me. Methotrexate, Enbrel, Humira, or Remicade. I am horrible about taking meds (I perfer holistic healing) and I am not ready to sign on to take a drug I know nothing about. We agreed that since I am not flaring this week and seem to be remissing, we are going to wait till I have another flare and revisit the issue then. She understands how I feel about drugs and I am glad she respected my feelings. It will also give me some time to learn some more about PA and the options available to me. What is Welchol? And do you know why she would skip COX-2's and DMARD's? (I don't really understand what those are but all the pamphlets I was given show those as the course usually taken before three of the drugs she suggested.)
I am also going for a followup to the gastro on Saturday (which I am a little nervous about as he first told me I didn't need to come in and then call me in for a face to face) ::bites nails:: but I am not going to let myself get consumed with worry. Originally he thought I might have been misdiagnosed with IBS and might have IBD and did some blood work, a colonoscopy and endoscopy and stool samples. He told me 2 weeks ago that my labs and tests (the stool sample wasn't back at that time) showed only gastritis and that he didn't see Chrohn's or IBD so the gastritis was probably from a bad IBS flare. Then the sample results came in and now I am going back so I am waiting to see what he says. I noticed on the Humira pamphlet that it is also perscribed to Chrohn's patients and I wonder what the link might be between the two diseases (aside from immune disorders). What do you do to help your rash???? I am just burning with desire to scratch the skin off my legs but that would be a little counter productive to the healing, no?

06-10-2009, 07:13 PM
hi sandy and carrie,

why don't you start a new thread addressing the skin lesions issue...i have seen where several members have years of experience dealing with these, and they can probably offer you some help. I am equally sure that there is a lot of experience with IBS.

Sometimes important issues get lost within the threads and we don't always see the posts. Starting a new thread will notify everyone of the questions and i am sure others will be able to help you,