Hi Dawn well a couple of your symptoms scream Allergy.
Now I am not saying you have an allergy but have you been tested for Gluten intolerance?
This if you have it can cause nearly all of your symptoms.
Perhaps just a simple test will at least irradiate that.
As to Lupus. Well thats what I was prepared for but my neurologist insists I have a neurological disease.
I had a POSITIVE ANA, but still got told no to Lupus as the test I had 6 weeks later was negative.
I too get a weird rash when I sit in the sun. I have a photograph of it and it looks as though my legs have corn beef hash LOL.
I find now I darnt sit in the sun as it seems to triggar a flare.
Lupus is highly complex and just as hard to diagnose which doesnt help you one bit.
You know you are sick its finding out what it is, but in this day and age when we can fly to the moon we cant seem to diagnose symptoms which for me seem to be fairly common now.
You said it started in 2003. Can you remember what was happening prior to that as sometimes I think there is always a key to these things.
I did a timeline of my symptoms and actually found they started in 1982...............
I would seriously get an allergy test if you havent had one as severe allergies (celiac) can cause ALL your symptoms.
On another note my daughter suffered with hives and vertigo at the start of her journey and she was finally diagnosed with M.E. Some of these illness even Lupus can suddenly make you intolerant to things you have had no problems with for years.
Lupus for example can suddenly make you intolerant of antibiotics that prior to you had no problems with. I have had this problem too. An antibiotic I was taking for years suddenly turned nasty and I had a bad reaction to it.
You are quite right a negative ANA does not rule out Lupus.
You must have at least 4 of these symptoms to diagnose lupus:
Malar rash fixed red rash over the cheeks
2 Discoid rash red patches of skin associated with scaling and plugging of the hair follicles
3 Photosensitivity rash after exposure to sunlight
4 Mucosal ulcers small sores that occur in mucosal lining of mouth and nose
5 Serositis inflammation of the delicate tissues covering internal organs and abdominal pain
6 Arthritis -very common in lupus, pain in the joints
7 Renal disorders usually detected by routine blood and urine analysis
8 Neurological disorder seizures or psychosis
9 Haematological disorder haemolytic anaemia, leukopenia, thrombocytopenia
10 Immunologic disorder tests on LE cells, anti-DNA and anti-SM antibodies
11 Anti-Nuclear Antibody (ANA blood test)
when found in the blood and the patient is not taking drugs, it is known to cause a positive test for lupus in most cases, but is not necessarily conclusive .
If you have the time could you let me know what happened prior to 2003 and a bit more detail, and if you have had an allergy test. The more information we can have the more we can support you.
I just want to say that I will never say you have this or that, but a second glance on symptoms can sometimes make you sit back and think WOW I never thought of that ok and at least something else usually simple can be either ruled in or out.
I had a baby in December of 2002. I will go way back with you though. When I was 16(1991) I had Bell's Palsy and again when I was 21(1996). I have not been tested for allergies but I def will be. I also have Uveitis in my right eye. I have had it 3 times now in a 7 month span. I was researching Lyme disease and I would really like to be tested for that, properly. This newest set of symptoms started after a major weight loss of 90+ pounds. I started dieting in nov of 07 and lost the weigh gradually. I feel somehow this is linked. First, I have never been able to lose weigh so easily. Second, it seems that this started after I had a more rapid weight loss from Dec 08-Mar 09 (42 lbs). I was doing nothing any different but the weight was falling off of me. I am not looking for a dx here I am looking for people to relate to what I am going through. Some people think if the doctors do not find it then it must be make believe and this is not the case. The hives I only get when I am exposed to cold. This has been happening since 2003. Other than that I tend to not show signs of any other allergies except to Erythromycin....which I have been allergic to since I was 9. Thank you so much for you response and I will try to think of more to tell you. My memory is so bad these days.
Hi, just out of curiosity why Lymes? Did you get bitten by a tick at any time or were you in a situation where you could have been bitten but not noticed?
Uveitis can be a symptom of Lyme disease so perhaps it would be a good idea to have this test. How easy is it in the states to have this test?
Your hives when reacting to cold is called Cold Urticaria. You should have an allergy test for this to see why you get it and what you can do to help live with it.
Allergy. Well if you went on a diet you might have without realising it stopped eating something which you were allergic too, so this enabled you to loose weight rapidly as quite often an allergy will put weight on you and once you have discontinued with the food causing the problem the weight can simply drop off you.
I am not saying that is what happened to you but it could have.
What do you think is really wrong?
These type of problems often seem to appear after the birth of a child which is strange I must say.
The Bells Palsy is interesting.
You say and I quote: Some people think if the doctors do not find it then it must be make believe and this is not the case.
No you must believe in yourself here. You know there is something going on. Doctors are basically there to fix simple things when it comes to complex conditions they either dont have the time or the knowledge to research what is wrong with their patients.
In the last decade we have more and more pollution and chemicals and I am convinced that some of these weird diseases have been triggered by them. We never had all these problems 30 years ago. Mind you I suppose we didnt have the Internet either LOL.
Look if you can think of anything else let me know. I must away to feed the animals but will catch you later. KEEP BELIEVING IN YOURSELF you will get answers I am sure of it. xxx big hugs Mariax
Three conditions that come to mind when I read your symptoms:
Chronic Fatigue Syndrome
If you have fibromyalgia... pain will be your primary complaint. If you have CFS, fatigue will be your primary complaint. The fatigue that CFS patients have is not relieved by sleep.... it is persistant and if you push yourself, you will pay for it the following day (or even days). Another thing that CFS patients tend to do is drink TONS of water. Currently, there isn't a test diagnose CFS (only research tests).... but there are other tests that many CFS patients are failing.
And a list of other conditions that your physician should consider ruling out before diagnosing you with either fibro or CFS:
P.S. --- 25% of CFS patients have a positive ANA titer (myself included).
Hi sorry it has taken me awhile to get back to ya. I do believe in myself and I love this place because so many people are in the same situation as me and I find it easier to talk about my illness here. What I meant by my quote about doctors is friends of mine, some family, and doctors that believe if the doctors can not find it then it is not real. I have always believed in myself simply because because I know that no matter what it turns out to be something is just not right. I have developed some pain that I have never had before in my lower back and hips. It is so intense that it awakes me from sleep. Apparently I moan a lot in my sleep as my hubby says I keep him awake with it. It bothers me all day everyday. I feel that I have some sort of auto immune problem or it could be Lyme. I got bit by a tic when I was about 9. Six years from that I developed my first round of Bell's Palsy. I was 16 at the time. I went to the doctor and they were doing some Lyme testing and wanted to do a chest xray. They asked if I could be pregnant and turns out I was. I think they thought that it was related to my pregnancy and let it go. Five years from that I had my second round of Bell's Palsy and that time I did not even bother going to the doctor. Ultimately that time was semi permanent. I regained most of my usage but when I am tired you can really see a difference in that side of my face and I cannot fill that side with air if I blow my jaws out or pucker up for a kiss. I am really at a loss as to what might be causing all of this and that is why I am researching different things. My energy level is way down and I cannot walk very much at all anymore. I am 34 and feel 100. Take care!! Hope you are enjoying your weekend!
I have a HUGE thirst.....I am always drinking ....most people find this strange. I even take a 44 oz cup of water to bed with me because I cannot make it thru the night without drinking. This creates different issues( restroom)...lol. I am researching all info I get...thanks for taking the time to respond!!
One more question.....would a Gluten allergy cause you to have any stomach issues? I do not have any trouble there as of yet.....just wondering!
I have the same problem. Please check out the fibro/CFS health pages and check out the symptoms for CFS. There is new research out on this very serious condition and there are treatments.
Oh... and gluten intolerance (which I also have had) goes along with CFS, autism and autoimmune diseases.
I went to look at CFS....and a lot sounds like me. Does it cause loss of periods, heart ailments, and scleritis or episcleritis in eyes. I could not find about that there....thanks for all of your help!!
M.E. can have so many symptoms even heart problems.
There is a good web site on the link page all about it (hummingbird).
I cant go through much right now as I have been feeling really sick for 2 days, but will try and catch you up tomorrow, but PlateletGal is doing a grand job.
Get to feeling as good as possible soon...thanks you for sharing
know you are not feeling well so answer this when ever you can...I was wondering if a normal MRI can determine changed in the brain from ME? The said my MRI was normal however the neuro said that I had one are near my brain stem that showed some indention and he said that it has been known to cause vertigo issues. Mine was rather large and he said that it may have been caused from high blood pressure. My blood pressure has never been extremely high but it is high enough to need medications for it. I am not sure what he called this...I wish I had wrote it down. I requested my notes and records so maybe it will be in there. I am really confused about ME....I am hoping that when you feel up to it we can chat more....thanks!!
"Does it cause loss of periods, heart ailments, and scleritis or episcleritis in eyes ?"
Everything you listed is often a problem in CFS patients... except the eye problems. Of course many CFS / M.E. patients have other issues as well.
As far as the heart problems CFS patients have :
Holter Test (heart) "All 60 patients with CFS showed repetitively flat to inverted T waves alternating with normal T waves"
Cardiac involvement in CFS patients (highly recommended):
We often have low blood pressure and many CFS patients have POTS (postural orthostatic tachycardia syndrome). When we stand up, we are dizzy and/or feel faint because our blood pressure is dropping and our heart rate increases.
P.S. ~ As far as vision problems that I've had. My eyes are usually dry and for years (on and off)... I've had blurred vision (usually occurs in the evenings). Currently.. I've noticed that my eyes have been hurting and I'm seeing my opthamologist again because on several occasions, I've had light shine in my eye. Its weird... its like the muscles in my left eye aren't working right. Last time this happened to me, I ended up with a migraine.
As far as loss of periods... this is sooo common in women who have CFS. CFS affects the endocrine, nervous and immune systems.
I have high blood pressure but i get very dizzy when I am laying down and stand up...I have to move slowly to keep from falling. Also, one more thing that I failed to mention....when I went to the Hummingbird page I saw a test that seemed very familiar to me. When I was admitted to the hospital over the summer the neuro came in and was conducting a clinical exam....he had me stand with feet together and arms at my side...eyes open I was somewhat wobbly, but when he had me close my eyes, i started to fall....I only realized that I was falling because he ran to catch me.....I never knew what that meant. The stated on my record that I have ataxia....maybe that is what they were trying to determine?? Is CFS and ME one illness? I am so confused this is all knew to me...I am sorry for asking so many qustions....Hugs
All of that is common with CFS. I think Dr. Cheney (?) said that 2% of CFS / M.E. patients have high blood pressure.... so you still may have the diagnosis and should consider talking to your physicians about ruling it out. I would also consider printing out that health page on tests that CFS patients often fail.
I have high blood pressure but i get very dizzy when I am laying down and stand up...I have to move slowly to keep from falling.
Usually when you stand up and feel dizzy it is because of LOW BLOOD PRESSURE.
However there is POTS.
Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up.
The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand.
Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about postural orthostatic tachycardia syndrome, click on the links under the POTS Place category in the navigation bar to the left of this page.
You can get POTS with dysautomia, and Fibromyalgia even M.E.
Chronic Fatique was originally classed as M.E. but things have changed radically in the last 10 years.
M.E. is M.E NOT CFS. People still like to call M.E. CFS because they do not have the requisit knowledge of this disease.
My second neurologist told me he though I could have CFS because I simply told him I get tired from 3pm onwards. What an idiot. Even people with M.S get over powering fatigue.
M.E. sufferes actually dont have this overwhelming fatique the reason why they are bed ridden is because their system cannot recover from exertion/exercise, it isnt true fatique that one gets when they are simply tired.
I can get up in the morning with all my normal symptoms but I am not fatigued even if i walk out with the dog, my legs might fizz and burn more but once I have had a little rest I feel better and recover. With M.E. it is different it takes longer to recover.
You could have POTS if you find you are having problems standing up especially if you dont have low blood pressure.
LOOK at this. M.E. VERSUS MS, there is hardly a difference it is no wonder why it is so hard to diagnose people. http://www.ahummingbirdsguide.com/mevsms.htm
I prefer to call M.E., M.E. not CFS as like I said the name was changed to M.E to stop confusion.
I feel a bit better today, it was just the consequences of going out on a small journey mad isnt it. Mariax
I am having a bad day today...probably the worst day I have had since July. I have another doctors appt today. I find that if I do too much I am down for 2 days afterwards...this time it hit me yesterday with severe vertigo, nausea, and severe lower back pain. My period is still MIA....and overall I feel like poop. I know you understand this. I read about ME yesterday and I also read that people with ME often fail the Romberg Neuro test which I did. I almost fell had the doctor not caught me. All of this is so overwhelming at times....I have 3 young children that need me and yet I feel like I am calling on them to help me more often than not! I made a list of ALL symptoms since 1991 I am taking with me today...for all the good it will do. I will read more on ME when I return home....take care!