View Full Version : Rheumy appt tomorrow, asking to see about Lupus DX

03-17-2011, 01:29 PM
I have seen a rheumy for a few years due Fibro but the stuff happening now is weird. I see the doc tomorrow. I have had several flares with horrible gland swelling. I feel like I have lymph glands under my breasts and near or on top of my heart. I do get chest pain but it's not cardiac. Seems at the end of a deep breath and at the end of an exhale and just in general the chest hurts. And if I'm stressed it's the heart feeling like it has a knot in it.

I have some of my usual typical joint and muscle pain but with actual swelling now. Blood work already confirmed blood vessel and muscle swelling but I don't know more than that. It's not RA, test was negative.

I do keep dropping things but it's not carpal tunnel as it's not selective fingers. No numbness just things fall out of my hands all day long. Right had has significant loss of grip strength ( I was fooling around with the grip meter at the chiro office) weird as the right was always stronger.

I have have extremely dry throat at times gagging at night. Been drinking huge amounts of water due to dry nose and throat but not diabetic. Eyeballs are very itchy feel like there grit under eyelid. But some times while laying on my side they are leaky, nice when I've been so dry. I only sometimes use antihistamine drops for the itchyness as I don't feel it's allergies. I tend to go for the eye lubricants. I even had some mouth moisturizer Biotene when I had a cold and had to breathe even more through my mouth.

Extreme fatigue with the swollen glands worse than CFIDS ( well it's been so long I forget) My vision seems to have gone down hill in the last 4 mos. more blurry. I'm already used to dealling with fibro and had lately been triumpant in reducing the pain with Vit D, Calcium Mag abnd some other natural stuff. Then along comes this lupus like stuff.

I am limited in the funds we have for insurance and to pay for blood work. I actually have taken to getting quotes from different blood labs so I get the most for my dollar.

I am prepared for the doc to say you are suspicious but the blood work doesn't show. They know I have an auto immune thing as I have Hasimotos. Oh throw in their perimenopause but that seems controled buy natural supplements, mostly but I few times I loose it.

In the past 6 mos flares were only about 2 weeks with down days just 4 days and the rest recovering because I realized the assault and pulled back all activities.

Any advice on blood work? I am concerned about this dropping things. I didn't think this dropsy was in with Lupus.

As a child I have had a rash that was oval in shape bilaterally on the sides of my knees, other places too but I forget. I have had it off and on but it was weird and never came to anything but did remind me of a "disc". My hair is falling out and there is not meds I take that could cause it. The throid tests for my levels are good. My cheeks are very pink but I don't see nay butterfly wings on my forhead.

I am doing better limiting who I give my energy to, my spoons. Doing better acepting I can't do major heavy work like I did, could be a good thing to delegate,

I do spend time in the sun but can't tolerate it... I don't seem to be able to regulate my temp. If exposed to hot humid weather, dry also I feel like I have the flu for 1 week. I don't get any rash from the sun. In heat waves I crumble. We have no AC. I scream at husband to turn off the damn solar collector or I'll shoot it off the roof( menopause but it's more than that). The docs know I have AI problems but now it seems to be coming to a head.

Thank all

Teresa in CO

Any thoughts would be helpful.

03-17-2011, 07:51 PM
Well teresa it sounds like you have alot going on. If you cannot get the answers you are looking for get another doctor. This is you heath no one can tell you what the best thing for you is except for you. So if you cannot get the answers you need from this doctor keep looking till you find the right one for you

03-17-2011, 07:54 PM
Oh Teresa I just typed out a really long post and I hit the wrong button and it went POOF. Short version is as follows:

You look like you have the majority of information to give to the doctor. I would like to point out one thing. Many people are sensitive to the sun and/or florescent lighting don't get rashes. I am one of the lucky ones (NOT) that can't be in natural or indoor lighting without getting a rash but that is not even the worst part for me. Sunlight sends me into a major flare. It is like it takes every bit of energy I have and I will be down for days. You have other symptoms that sound like you are sensitive to the sun just like many of us yours just shows it in its own way.

The one thing I want to be clear on is I don't know why your doctor would doubt autoimmune diseases like Lupus or another of the 80 rolling around since you already have 1. It is very common for people with 1 AI disease to get others as well. There are many on this board that have overlapping diseases so I am not sure why he wouldn't rush to get you tested for others!

Ahh, the dropping things! I didn't think it went with Lupus either but I started a thread when I broke my toe yesterday and you would be be surprised how many people have that issue. Each persons Lupus is individual like the person is.

Please let us know how it goes tomorrow. I will cross my fingers for you

03-17-2011, 09:26 PM
I hope that I'm not too late in adding this info. You mentioned dry eyes and dry mouth, which made me immediately think about Sjogren's. Check out this site: http://www.sjogrens.org/ It can affect lots more than just the eyes and mouth and can overlap with other AI diseases.
Ask your rheumy to check for it while he's at it.
Does the CO mean that you are in Colorado? I attended a Sjogren's Conference in San Francisco. One of the best speakers was a doc from the Jewish Hospital in Denver. They seem to have a great Rheumatology Dept. there.

03-18-2011, 06:03 AM
I am lucky so far with docs. None of then deny there is is an AI going on. I am the one delaying the blood work. The symptoms are now very debilitating, well not as bad as some but scary enough to warraant intervention. My ortho surgeon ( fused my spine due to spine fracture of genetic malformed L6) tested me in 97 when he suspected an inflamatory disease. We talked about lupus coming up positive and not to be scared. It all came back negative except they did label me as Fibro and instructed me to follow those life changing behaviors that go with it as well as tramadol. So my rheumy now would also run tests but I have limited funds as well as realizing some blood labs charge 4 x what others do.

I have been reading on Sjogren's and will check it out some more.

It's strange about the sun. In the cold winter I do really well being out in the gorgeous Colorado sun. I get much more energy. But once the temp hits 70-75 I start being ovewhelmed by it. I wet the straw hat and put it on and did ok to water the plants yesterday. My bedroom was over heated by the solar hot water heater. Idiots put the storage tank in the closet of the master bedroom so it gives off heat, not good for perimenopause. Great if it's under 15 degrees outside. I have done Florinef when totally overwhelmed by the heat and it works. Forget salt tabs, postassium helps. I overdrink trying to quench my thirst and make my postassium levels way too low causing muscle cramps, feeling sick and chest pain. I think that's the Sjogrens' telling me the mouth is dry so drink. That causes me to pee a lot and with a small perimenopausal bladder( ?scarred by C sect) I flush the toilet so much I installed a #1 and #2 toilet flusher. I wouldn't doubt this AI disease is a factor.

As for stress my family is under extreme stress with my 30 y.o daughter having been in a hit and run accident last October. I found she stole my 60 tramadol last week. The pharmacy said I picked it up last week and she confessed. Even though I have a note that restricts only me or my husband can pick up meds and the regular pharmacists knows she's an addict and I should pick up her meds. She's done this and many other drug stealling things so I sent her packing with her drugs and said best of luck. I then filled her prescription and decided I would keep that as a replacement. All the meds even benedryl are locked in a safe but it takes a huge effort to manage the family meds as the dogs are both on tramadol. It is a huge stress but I am not going to put my life down for her. It may be a good thing she goes down the tubes cause I am not going to be the mastermind. ??? I can't put it in words but I have to be incharge of my health and she incharge of her's cause it won't mean anything to her if she doesn't.

I did find a good back surgeon in Denver, another nice teddy bear doc. Mine from back east got MS. I will look up the rheumy at Jewish Hospital. My landlady from CO had Sjogren's. She then came down with breast cancer at the same time her sister did and her mom died. Talk about stress. She was a dear but moved away. She and I loved gardening and taught me pickling. I will write down all my notes and I bet the doc will run tests and I know even if some are negative he won't dismiss my symptoms or suffering.

Thanks all.

Teresa in sunny Colorado

03-18-2011, 10:34 AM
Hi Teresa,

Welcome to the WHL and it's lovely to have you with us and you've got so many on going situation's.

Like tgal said about the sun, not everyone gets rashes with it but it's the worst for triggering the Lupus and even though you like it, i really do suggest a 50 block to protect yourself, i only have to have 10mins out in it and i feel like i've been fryed.

Refering dropping things push your specialist to test you furthur, to see if you have sjogren's disease like me and marla have as the symptoms from that are unbelieveable, it works very strong in the system and can cause alot with your muscles. My hands and joints are swollen plus that's not helping and my grips terrible or even join the site marla as given you.

You can have different blood tests by different specialist's and things could come back negative when they might be positive as Lupus is a terrible disease for messing with your bloods for a proper diagnosis, it makes your bloods fluctuate bad.

You have so much going on but it's hard to say this because i get stressed very quickly but it's the worst cause for the Lupus and making it flare and it can easily set in depression.

Terri xxx

03-18-2011, 05:29 PM
Hi All, The appointment went well. I rattled of the symptoms, he stared at my face, checked my spleen, ribs and sternum really hurt. Then said, think we should test for Lupus?, so he's running ANA Profile reflex and Complement, total. The naturopath had run some others. He did comment how high (158 should be under 19) my Anti-microsomal ( thyr) was. He kept thinking the swollen glands was from some immunization shot of a cold and I said not on your life. Asked if I wanted more pain meds or Zytec for itchy eyes. I said that won't help, eye lubricant would. I told him I would not freak if it was positive for Lupus or Sjogrens as I already have a disease just not a name. I told him the dog gets 200 tramadol a month to my 60 so I said I would ask the dog for a few if I blew a gasket, he laughed.

He asked if the symptoms get worse with stress. I am so used to docs poo pooing that ..... I don't know what. I said "it is a factor" but I failed to say it rockets the symptoms.

So on monday I will shop for prices on blood test a bit but just do the test if I can't find a cheap place so I don't stress too much.

Now for a quiet weekend alone.

Thanks all

Teresa in CO

03-18-2011, 06:04 PM
When I looked up plaquenil on the www it often has Lyme disease mentioned and I have seen it used in malaria. How does plaquenil work? I had a lyme tick bite with a bullseye rash, did antibiotics but know that the disease can linger in joints, not show up in blood work. People from my area( Mass) got lyme disease all the time as do the dogs. My goats have a similar disease babesia I had to dose them 2x a day for 12 weeks. One is still sick but I just can't deal with it. She's happy and eats well, good enough.

Anyway I know the naturopath will want to try being better about my supplements, no whea and milk. I do notice if I don't do supplements them I am soon relapsing. This recent flares over 2 mos I feel was me being wild with the wheat cupcakes. I guess I have to figure if I can get by with how life is going, hope it gets better with strick regime or try plaquenil. I have a much better handle on fibro type pain and some joint pain is better so I have some hope.

03-18-2011, 08:36 PM
Plaquenil is a first line medication for lupus. We take low doses (200 to 400). Plaquenil works slowly so you don't usually really click that it is working. Plaquenil works to relieve inflammation in the body. Over time you notice that you haven't had a new rash in a long time or they are less severe. It also works well on mouth/nose ulcers, stopping hair loss and many other things. There are many side effects with Plaquenil however most of them only happen on the larger doses used for treating malaria.

You mentioned lyme disease and for good reason. Often times people with Lupus or other AI diseases get misdiagnosed with Lyme because the symptoms are much the same. The way it works on Lupus patients and RA patients is about the same. The drug reduses inflamation and inflamation is what causes most of our illness.

Hope this made sense.

03-18-2011, 11:58 PM
a little point to note.
if you have lupus, you can get fibro, afterwards.
you can not have fibro first and then lupus afterwards.
there is a possibility that the fibro diagnosis is incorrect.
or you have had lupus undiagnosed for a while now.

please get a full blood check.
sorry to hear cost is a problem, but the bloodwork will make diagnosis, then treatment easier.

03-19-2011, 10:38 AM
Is my head spinning??? lol So what are all the people walking around with a fibro diagnosis doing. I always thought many have fibro but few have Lupus. Fibro doesn't show up on blood work. The muscle and blood vessel inflamation positive on the blood work was a red light there was more than fibro. We knew about the hasimotos for 6 years but you know how that goes, many many years of telling docs of extreme fatigue, CFIDS, infertility....etc then a doc who deals with fatigued women ran the thyroid antibody test, bingo for Hashimotos. When they diagnosed fibro 97 after 3 spine surgeries and bacterial mennigitis from surgery, the lupus tests were all negative and I had a lot fewer symptoms.

Speaking of infertility, I swear I know many people who adopted kids due to unexplained infertility who have had hypothyroid also and then later developed Lupus. I have an adopted son now 13 and I do feel sorry for him he has an adopted mom who not functioning well, very cranky but who knew. His life in an orphanage as a double amputee would have been miserable.

I think I have had it for years but it just shows up now that stress in my life is pretty bad and my body is fighting celiac. I had a chiropractor tell me 8 yrs ago no wheat and milk and not to do a liquid cleanse diet as I was a train wreck. I told him I felt like I was dying with no cancer diagnosis to have people help me. It was amazing the recovery I made with no milk and wheat. The celiac test was negative as I was Gluten free mostly but the chiro and homeopathic MD said you should be Gluten free it 's probably celiac. So my poor gut was" normal" by biopsy but to me a mess for years. I don't think I absorb vitamins from my diet as the vit D is low and I cracked my spine fusion from low calcium. So I am being much better taking my vitamins and more of the bone and jt pain is better. For years I took nexium for GERD and take pepcid a few times a month now that I am better on no milk and wheat. The gut was inflammed too I guess. I still think it is some. The GI specialist said " You are not celiac" hogwash or something like that. The chiro and homeopathic MD said you are celiac( not in there notes) so behave. I guess I am lucky I have docs who don't rely totally on proof.

Recent doc said I was very low on protein so I feel like I am malnourished but I feel I eat pretty well. She has me on a protein shake 1x a day.

I was trying my best to be gluten free but did cheat. Now the doc says no way, no how should I cheat. I was eating cheese and I really have to eliminate it. I do notice a difference. I am using avocados and telling my self they are cheese on my sandwhich.

As for the lyme disease, I know I had it and probably didn't treat it as thoroughly as needed. A vet said she has had the bullseye rash and come up negative on the test but treated herself with antibiotics for 6 weeks.

I spoke with the leading tick disease specialist in the country who does DNA test on people and pets. I sent my goats blood( she pees blood) and requested 2 tests as the symptoms fit. It came back a weak positive for babesia. The repeat one came back negative. The vet said the weak positive is a positive as the disease was floating by at that moment and on the second time the disease wasn't. He finds lyme disease in cartilage of animals exposed to lyme but treated with antibiotics. The lyme can hide in different tissues better than others. So the blood can have none but it's still their waiting to come out when the body is stressed.

So all these assualts on the body I guess finally wear me down. But today I am focusing in planting some snow peas and maybe spinach in between resting. The dogs and I and of course the goats love just sitting and munching. It's quite commical as they expect there daily peas and they all line up and the queen dog will just bark at the gate. I have been able to do lasagna gardening. No tilling or digging just keep layering the vege compost, much easier to be a lazy gardener. I think it really releases the endorphins just thinking about the green spinach on my gluten free bread.

what do others do to bring joy and stop thinking about AI wreaking havoc on life?

Teresa in CO

03-19-2011, 11:14 AM
a little point to note.
if you have lupus, you can get fibro, afterwards.
you can not have fibro first and then lupus afterwards.
there is a possibility that the fibro diagnosis is incorrect.
or you have had lupus undiagnosed for a while now.

please get a full blood check.
sorry to hear cost is a problem, but the bloodwork will make diagnosis, then treatment easier.

If the medical system worked as it should you would be correct. But MANY docs through the fibro diagnosis out when they don't know what is going on so many people believe they have fibro long before they know about their lupes. I am a perfect example of that. I had almost all ofr the fibro pressure points but it over a year later before I got someone to admit that I had SLE and not just discoid. Many people on this board have a fibro diagnosis but no SLE diagnosis because the docs don't understand that the way lupus is diagnosed is cumulative. They want to see all the criteria at one time and that don't happen often. There are poeple suffering for no reason be ycause their doctors (even Rhuemys) just don't get it.

So technically you are correct but that doesn't transfer to the real world very well

03-19-2011, 12:01 PM
Oh Teresa. Your post brought tears to my eyes. Yes, your head is spinning because so many people are told for years that they have fibro because the doctors still don't understand how to diagnose lupus so they go months, years even decades thinking that they have fibro and that they are crazy. They have doctors look at them like they are crazy and that they just want something to be wrong. One other point I want to make is to clarify something that I think you may not understand. There is no test for Lupus. There are are test that the majority of people with lupus will get a positive (or negative) on but many people with lupus won't. Maybe it's the meds they are on, maybe they are not currently in a flare and maybe they are just the small percentage that don't have that happen but there is NOT a test for lupus.

My story because in many ways it is like yours. Looking back I have had this a long time. I remember having a spell in high school where I stayed in bed all the time and felt horrible. My mom even took me to the doctor for it. They told me that my cholesterol was too high and sent me on my way. I came out of it (problem because I self medicated) and went on with a somewhat normal life. Well, if you count 1 live birth and 3 miscarriages normal. To get the live birth I had to take fertility meds. My ex husband and I split after I had to have a hysterectomy when she was 9 months old. So I learned how to be a single mom and I worked every day! I was pretty normal until about 5 or years ago.

I began to have terrible pain in my stomach area. I never went to the doctor so I didn't have a "regular" doctor to go to. I found one close to were I worked and he said that I had gallstones but it wasn't bad and sent me home. FYI, if it sent me to the doctor it was BAD! The pain got worse so I went to ANOTHER doctor who set the surgery up. Went to the hospital to have blood work for. Surgery happened on Monday and I got a call from the hospital. Unless you get your potassium up we won't be doing the surgery. Needless to say they ended up doing the surgery. I get home to find out I have a MRSA staph infection om my face. Had to stay out of work until it was cleared and I was going crazy because I never missed work.

About this same time they put me on BP meds because my BP was so high. That is hysterically funny because I have always had low blood pressure. I mean, so low that I can't get pain meds during surgery. They knock me out and when I come to they give me something for pain. Now it has sky rocketed . I just told myself that I was getting older.My joints began to ache and I started getting these weird rashes. I would get sore in my nose and mouth ulcers. I began to get the flu every year even though I had the flu shot I NEVER missed work but now I am catching EVERYTHING. In Nov of 09 I went to the ER thinking I was having a heart attack. BP was off the charts. They sent me to a cardio doc who said everything was fine. I went to a new PCP and when he asked what was wrong I broke down in tears. My memory is gone! I can't remember anything; My joints hurt so much that I even walk funny. My muscles feel like I have had the flu. I can't breathe. It feels like I can't get a deep breath.On and on I went. He put me on many meds and one was a medrol back. OMG I felt wonderful for about 3 days. I felt so good I took him balloons!

The bloodwork he did showed me ANA positive He sent me to a Rhuemy said during the first visit "Classic Lupus" and started me on Plaquinel and Steroids. Called me back for blood work in two weeks. When he saw the results he said "No SLE. You have SCLE lupus. Just joints and skin". I left there wonder about the rest of my symptoms. Seizures were diagnosed but I was told "nothing to do with the Lupus" What??? Are you kidding me?"

Even though I had 7 out of the 11 symptoms no one would diagnose me. Each specialist only worked on their own section and wouldn't look at the full picture. OHH one other thing. Each doctor told me a different way of eating. One said atkins like..another completely natural with only lean meat. One told me to give up all meats. I would try then and get a little better but I couldn't live that way. Finally 2 months ago I was diagnosed with IBS and the meds fixed my bowel issues.

Sorry it is so long. I have tons more, as we all do, but I wanted you to see that many of us go through what you are going through and end up with our head spinning

03-19-2011, 12:50 PM
Are you sure Steve? I know an awful lot of folks that had fibro first (myself included) and then exploded into Lupus and it's many variations afterwards. My doc told me that they diagnose fibro as broad pain without ANA numbers and Lupus with more specific joint pain and swelling and ANA numbers (I over simplified that considerably). But I agree, a full blood test is definitely needed!

03-19-2011, 08:02 PM
Hmm low potassium? Is that common with Lupus? I often test low on potassium, so does my daughter. ER doc said some people have a hard time holding on to potassium.

I often will tell folks I have " arthritis". Many people seem to say they have fibro but only in certain company. Just like it was looked down upon to have " Chronic fatigue syndrome". I had CFS or CFIDS in my late 20's early 30's( lost my balance and my memory, thought it was the mennigitis and my mind but had a teenager), then blossumed into fibro during my spine surgery years. I gave up tramadol for 3 years in hopes chiro would help, not. I was so low functioning I said to hell with it and went back on tramadol for my Fibro.

I have done my best to eat well see the chiro only when my back was out, saw a wonderful massage accupunture person, did allergy drops. It all helped some but it all seems to have caught up with me now, lots of stuff is worse but some is better so I'm ok.

If I mention to friends the doc think's it's Lupus, I get " oh you poor dear" or my sister thinks I'm just looking for a worse diagnosis than I had before. I must be bored with that one. I don't talk to her much about it. My husband doesn't have a clue. He's still trying to deal with PMS, perimenopause LOL!!! He knows I've gone to bed for days, weeks over the years with CFS. So now he understands arthritis, not sure he'll comprehend Lupus. His cousin has Lyme and Celiac so it's ok for me to have that, cause she has it. On top of that he looks like he has Asbergers??sp. No clue why his wife goes ballistic, lololol, maybe that's a good thing. The kids just complain and don't bother to lift a finger. I quit cooking for them. I never do the kids laundry and only do DH's if I need more clothes. I usually stick to buying my food and will buy theirs if they accompany me to the store and haul it in and put it away. Thanksgiving and Christmas dinner was pretty sad here.

So when I'm all hunched over shuffling in pain I say it's an arthritis flare. I am not worrying that the docs can't add up all the blood work though it would be good to catch it when it's positive. Do the numbers seem more positve in a flare when you're miserable? In the past all my labs were fairly normal till the hasimotos 6 years ago, no lupus or arthritis things. The low postassium has come up over the last 3 years. Liver was bad( 97) when I had lots and lots of lovely morphine and had mennigitis. Had a zillion sinus infections till I gave up wheat and milk. Though I just had one from cheating with cupcakes and cream cheese frosting and catching a cold which I rarely get.

I feel bad for the people who say they have fibo now, hashimoto's, infertility. I can see it coming.

My naturopath doc says I need to eat meat and more protein. I would make a lousy vegan but I do strive for some vegan products. I am trying not to limit my carbs but add in more veges and fruit. I have a friend who is a Gluten free chef and he always brings me bagels, rolls, pumpkin bread to sample. Just when I thought I could loose a few pounds but not having money for those GF luxuries. It will help with the grocery bill.

At present both my husband( student) and I are using his retirement we are early 50's. I could go back to work if I could feel betetr. Ots' are highly employable and can do per diem work. So soon hopefully. But for now I am just trying to be good to myself to heal.


Teresa in CO

03-20-2011, 04:19 AM
good to see the positive side of you. many of us get depressed,when things do not go right. stree can make the symptoms worse. a happy person has less stress. keep the positive side.

serand4, yes i have researched my comments very thoroughly. there is a lot about the auto imune system we do not know, but a lot is being realised every day. Lupus is a tough problem to deal with, but scientists, not doctors are leading the way into finding out how our brain trully functions.

Mari, thanks for the little insite into your life. it helps us to understand, we are not alone in this.
thinking of you at this time.

04-02-2011, 08:30 AM
Hi Steve,

Good point there mate looking up on Lupus and other symptoms because if we don't do it we definitely dow get much from the rheumo's, well i don't mines useless.
All they offer you over here in the uk is councelling, which is madness when you have excellent forum like ours and friends who you can explain your heart to.

04-02-2011, 11:10 AM
I went for my blood test on Mon or tues day and the lab had a hard time figuring one request. It didn't match up with what they have on their list even though the requisition is from the hospital. Anyway the lady guessed it was a C 3 and C 4, the doc ordered a complete??? And an ANA. The lab said they wouldn't charge me if they did the wrong test.

My energy is low and I'm foggy, mild head ache. Sprained my ankle due to wearing stupid big boots. I have to eliminate all the "make do" things that could cause a disaster like a broken ankle. I deserve good fitting sneakers, a nice wide brim hat, some special long sleeve light weight shirts and pants to keep the sun off. My daughter left as she had pawned my college ring and was doing drugs on top of her prescribed high dose pain meds. So stress is an all time high. I remember the times of being a single mom struggling so times are better. Age has it benefits, turned 50!

Taking my St John's wort and now spring is her I'm puttering in the garden watching the spinach grow except it's not even up yet, lol

Thanks all

Teresa in Sunny CO

04-03-2011, 02:16 AM
good to see the vampires doing a thorough job.
the more tests, the clearer the diagnosis.

hope the tests come back ok.

04-03-2011, 09:01 AM
Well a positve will confirm my suspicions of 13 years with only mild, mod suffering. But a negative could be a " well ok I can fool myself for a bit longer" A negative would mean I could jump from doctor to doctor and be drained of money ding tests or I could stick with my Naturopath and keep boosting/ supporting my immune system with her concoctions. So far her cocktails have diminished the pain to 2 tramadols a day.

I always tell myself not to worry duirng the waiting of the blodd tests but here I am again moping about. : (

Teresa in CO

04-04-2011, 09:04 AM

If you test does come back positive at least it will put your mind at rest as i was the same as you waiting for the results but if it shows a negative Lupus is terrible for playing about with our bloods and it makes them fluctuate so much.

Your not moping about mate your just saying how you feel because it ain't half a waiting game.

~Hugs Terri ~ xxx

04-05-2011, 08:39 AM
Hi Terri, Does the disease show it self in the blood when the symptoms are at their worst? I had my blood test that showed inflamed blood vessels and muscles when I was getting better after a major glands swollen and pain episode of 3 weeks. It was 2-3 weeks after. I still felt a bit sick but no where near as bad. This time when they drew the blood the glands wheren't swollen and the pain was better but the brain fog was bad, lol.

I feel a bit better but still a strange brain fog, depression and a bit tired. If I push myself my glands swell. Last week I was extremly anxions and it seemed like my adrenals were on over drive. I have some supplements that help but I swear all I water was a sleeping piull to hide from the world. Driving is not fun due to the fogged brain so I try to stay home. Saves lots of money! I have a big board meeting this Thursday and I have to let them know I am not doing the fund raiser this coming fall. Myself and another person did 90 % of the work so parents of handicapped kids can drop their kids off and have them entertained . I'm sick of putting out for another kids and family at my expense. If they like the sport they can work for it. I suppose I have to learn not to overdo or do for others and make myself a door mat. I guess I have to get smarter about getting others to fight for what they want and if they don't want it they don't.

I have a neighbor who had a heart attack, which is how she found out she had Lupus. he husband has done some great work repairing our house. her son is a chiropractor who we started seeing. My 30 y.o. daughter had a backinjury and neck injury from a car accident so I though the chiropractor was mild and nice and the price was right. NOT he sent a bill to her insurance for $500 when for the same treatment he would have charged my $150. I nearly had a heart attack. She only has a limited car insurance money for this accident and he squandered it. I was seething mad and was having chest pains. I am still upset and whe I feel better I plan to address it with his office and him. As well as not go back. I have lost faith in his abilities and his office staff. I found out he is not as proficient in chiropractic as I thought and my daughter had less pain in her back but more sharp shooting pain in her hand.

It scares me the medical profession and the things that go on. I have to find a passion to keep my mind off my worries.

Have you found something?


Teresa in CO

04-05-2011, 12:19 PM
Hello Teresa,
It's in your blood even at it's worst but it does'nt always show the correct readings that's the trouble, they did 9 bloods with me to start and not much showed, then another 12 and i had to go into the day unit and another 11 was took before they could get proper readings for what i've got below and i was rock bottom with tiedness and i was pale at the time i had my GP doing Anaemia tests and they was coming back perfect plus with the rheumo tests, until after 6mths i had a letter through the door for me to start folic acid tablets, then when i went to the hospital last time the blood specialist said i needed B12 jabs for life, it took 6mths for a proper reading to show, that's why so many member's can't get proper results from the start and more keep having to be took.
Teresa how you've just explained your symtoms, then the bloods showed it better but you was bad with a foggy brain, that's because the Lupus is strong in your system, i actually think it's a shame how none of we can get direct blood results straight away half the time, that's why more is took to try and confirm better and like yourself i have that foggy brain and at the moment my sjogren's disease is running high in my system plus the Lupus, the blood specialist told me.
Your getting the depression from the Lupus as it causes all these affects i've got manic depression but depression is the worst for the Lupus it kicks all the symptoms you have with Lupus off.
I know this might sound stupid but with brain fog and tiedness just be careful while driving and as for hiding from the world mate in 25yrs of proper diagnosis with other stuff i've done loads of stupid things not to be here in this world but i'm still here, i've proberly caused more damage to my insides than anything else. What helps me keep carm abit is taking a 5mg valium tablet every couple of days at night.
Teresa i've learnt some hard lessons in my life and a good many of us have and besides my husband i've learnt to put myself before other's and even more so now with this because it can ware you down and you must do the same, by how your talking you having a ruff time and don't need the extra burdons on top, look after yourself teresa you ah being cruel to other's mate, you need to put yourself first.

Well it is a known fact that Lupus how bad it is in the system can take you down with an heart attack, my friend had one the same age as me 42and her's was through having raynauds, she's never been diagnosed with Lupus.
Oh i'd get this money sorted out mate and it seems like he's having a right field day at your expense and the worry of this won't help one bit.

I'm used to the medical proffession after 25yrs of going through the system with different specialist but i do know a good doctor from one who's crap and i don't mess about telling them either, as it's our lifes they're playing with.

Well Teresa everyday when i wake up i slowly go about doing house cleaning etc but the lots paced out now and if it's nice i relax in the garden in the shade but if it's to hot i'm soon in and otherwise i'm with a staffysite where i have some great friends but they don't know about any of this plus i did my profile page based on my staff bruno, i've just brought myself a gecko, so there's the looking after Blaze now besides Bruno.
I've been doing my family tree for the past 6yrs and i'm with 3 different sites with that and contacts but my main reliever at night is my reading, i can do a book in 2 nights, i just spread things out to how my mind can take it.

I do hope your abit better tomorrow ~Love Terri ~ xxx