REET, I believe that vaccines effect the brain and alot of people are getting them more than ever now, maybe that why. I got sick after a flu vaccine and never recovered, I know so many people who have. Just food for thought!
Hi Alley,
Your right about vaccines affecting the brain and never thought about checking on that till you mentioned "Nice one mate"....they affect you neurologically.
It's good food for thought also and what they can cause :) xxx
"Vaccines and Neurological disorders"
- Encephalitis
- Ataxia/Apraxia
- Retardation
- Meningitis Paralysis
- Paralytis polio
- Ms Gullain Barre Syndrome
- Lupus
- Hyperactivity - ADD, LD
- Demyelinization diseases
- Auto-immune Diseases Epilepsy
- Convulsions - Seizures
- Blindness
- Deafness
- SIDS
- Epilepsy
- Mental confusion - lowered IQ
- Brain tumors (SV-40)
http://www.mercola.com/article/vaccines/neurological_damage.htm
I refuse the flu vaccine now and have for a long time. In fact, I can't remember when I had one last. I have a friend that got Guillian Barre after having the shot and I know of several others. Whatever I take now I do just to keep me going. I think this is a great subject you brought up, Alley, and something everyone here should consider especially since doctors push these vaccines on people with auto immune diseases. Reet
Alley said:
REET, I believe that vaccines effect the brain and alot of people are getting them more than ever now, maybe that why. I got sick after a flu vaccine and never recovered, I know so many people who have. Just food for thought!
Lucy. I feel like that all the time. Never know what to expect the next day. The next week. The next month. It’s scary. And as far as emotional. I am super depressed. I am so tired of being sick and tired. It’s a very hard thing to live with and I’m sorry for u. But I know how u feel. U can always ask for help or advice here. We are all here to help each other. 
feel better!!
Hi Reet,
I've just had the flu vaccine and i'm on the list for the pneumonia one because of my lungs and i pick up germs quick and the lot above makes sense and what your saying but i'm being straight i've got so many issues overlapping one another as you know, i've got to the point where i can't be bothered.
Cancer runs bad on my dads side besides strokes...well i had the strokes bad early in life and the way my lungs am paining me constant, i'm only waiting for the (C) word to be dropped on me next and i've done me quoter.
I'm not looking at things in a bad way i cope from day to day but there's never gone a year since i was 18 without something being diagnosed on me again :)
Yeah i feel that way alot to ive noticed…my doc says im just anxious? ??? Hummmmm
Thank you all for your responses, it truly does help to know that I am not alone in my fears and feelings. I am 34 and have a family and to this point have been going, going, going....hoping that it would just "go away". I know this is not going to happen. I have seen my doctor and they prescribed me a medication at night to help me sleep as at night I can't slow down my thoughts! I am on day 3 and seem to be sleeping better, my brain has been shut off at least during the night. I thought it was strange for years even before my diagnosis I had very vivid dreams that someone was in my house or there were people in my room (dont think of me as strange please, lol) I always have dreams of missing deadlines....my husband told me that he found somewhere that this is a "uncommon sign of lupus" in something he read.
Anyways just a update and I thank you all so very much, it is comforting that you are all out there and so supporting! xoxoxo
Jillynic,
Please don't hesitate to reach out to any of us if you are feeling overwhelmed. We all go through different levels of the same emotions on different days. What has changed is you now have someone to talk to that "truly" understands what you are feeling and will listen and commiserate with you. It's difficult for all of us on any given day and we are all afraid, anxious, unsure, etc. PM me if you ever want to talk.
You are not alone,
XOXO,
DeAnne
Jillynic said:
Lucy. I feel like that all the time. Never know what to expect the next day. The next week. The next month. It's scary. And as far as emotional. I am super depressed. I am so tired of being sick and tired. It's a very hard thing to live with and I'm sorry for u. But I know how u feel. U can always ask for help or advice here. We are all here to help each other. :-) feel better!!
Lucy267,
I never thought about it, but I have VERY vivid dreams every night, even before diagnosis. I want up screaming even occaisionally. My husband is used to it by now, but it really is quite a strange phenomena.
My own personal belief is that it has to do with the disease affecting the brain, which is well-known.
As for it being an "unusual" effect of lupus...that's somewhat funny as I am not certain what a "usual" symptom is. That is what is so great about this board, there is almost certainly someone here who is experiencing the same symptoms in some form.
At the top of the page you can input words for stress, insomnia, anxiety, etc and find past articles relating to issues that may be affecting you.
There is always someone here for you so don't hesitate to post or PM anyone, anytime.
XOXO,
DeAnne
lucy267 said:
Thank you all for your responses, it truly does help to know that I am not alone in my fears and feelings. I am 34 and have a family and to this point have been going, going, going....hoping that it would just "go away". I know this is not going to happen. I have seen my doctor and they prescribed me a medication at night to help me sleep as at night I can't slow down my thoughts! I am on day 3 and seem to be sleeping better, my brain has been shut off at least during the night. I thought it was strange for years even before my diagnosis I had very vivid dreams that someone was in my house or there were people in my room (dont think of me as strange please, lol) I always have dreams of missing deadlines....my husband told me that he found somewhere that this is a "uncommon sign of lupus" in something he read.
Anyways just a update and I thank you all so very much, it is comforting that you are all out there and so supporting! xoxoxo
I'm glad your sleeping better Lucy. I take clonazapam at night to sleep for many years now. When I had a sleep study done they said that I wasn't going into stage 3 and 4 sleep, which is common in chronic fatigue syndrome and fibromyalgia, so I bet Lupus has issues similiar too. I hope you start feeling better now that you are getting sleep.
HUGS, Alley
Hi Alley,
I take valium sometimes at night they carm the cells down in the brain...mind you i don't half get a good sleep :)
Alley said:
I'm glad your sleeping better Lucy. I take clonazapam at night to sleep for many years now. When I had a sleep study done they said that I wasn't going into stage 3 and 4 sleep, which is common in chronic fatigue syndrome and fibromyalgia, so I bet Lupus has issues similiar too. I hope you start feeling better now that you are getting sleep.
HUGS, Alley
Lucy,
Like Tez_20 I take a Valium at night. I tried ambien at first but it only increased the frequency of the nightmares and vivid dreams which had me waking up much more often. I did try Clonazapan at first and it worked well, but my body became used to us.
There is a natural OTC called Clames Forte which I will occaisionally take as well that also seems to help the body relax as well as the brain. I don't know about anyone else, but I have actually had to pay attention to consciously relax my muscles starting from the feet up. By the time I reach my head, I am usually asleep.
Please speak to your doc about this as sleep deprivation is as dangerous as any other symptom of this disease.
XOXO,
DeAnne
Each person has to make their own decisions on all things! I so agree Terri, that you need to take these shots. I am gald that you are a person who knows what they need and are able to stand on your own two feet. It took me a while to stand fast on what I need to do for my health and I am glad I finally can. I had to do that todayl I went to an orthopedic PA for my injured foot from 2 weeks ago. Had another set of xrays and he didn't see anything different. I did what you suggested about asking about bursitis. He felt the foot and decided to zoom in on the xrays on the computer and found a "something" that he has no clue what it is or were it came from. He got real concerned then and I am having an MRI on Wed. Why he wouldn't listen to me 2 weeks ago I don't know but I sure pushed him today.
Tez_20 said:
Hi Reet,
I've just had the flu vaccine and i'm on the list for the pneumonia one because of my lungs and i pick up germs quick and the lot above makes sense and what your saying but i'm being straight i've got so many issues overlapping one another as you know, i've got to the point where i can't be bothered.
Cancer runs bad on my dads side besides strokes...well i had the strokes bad early in life and the way my lungs am paining me constant, i'm only waiting for the (C) word to be dropped on me next and i've done me quoter.
I'm not looking at things in a bad way i cope from day to day but there's never gone a year since i was 18 without something being diagnosed on me again :)
Hello Reet,
I do apologise for being late in replying.
About time regarding your foot and i am pleased you mentioned it, as this does occur with Lupus patients and if your x ray is showing this of your toes then you have buritis it causes the toes to twist and the bones seperate and that's where the cracking comes from.
This is where it pulls on the tendons on the back of the foot and leads into the ankle also.
Reet best of luck for tomorrow and please let me know how the MRI goes and still be persistant on knowing what's happening where you feet are concerned.
Love & best wishes Terri xxx
Hi, I am new to the group as well. I was recently dx in February 2013. I have found myself experiencing some cognitive decline as well so I was glad to see this post. I am not sure what's happenign and will be sharing it with my rheumatologist at the next appt. It is really bothering me. Today I checked the mail twice because I forgot I had already checked it, yesterday I couldn't remember if I had taken one of the meds already and I'm having to write everythign down. I'm asking the same questions more than once and this is really bothering me. I cannot function like this when I return to work they will think I'm an idiot.
Lucy, hi it’s nice to meet you my name is Erin and I have been coping with lupus for a little over a year now and was just diagnosed this month but it totally changed my personality I was sure I was going crazy especially during a flare I would have trouble remembering to do every day tasks and also struggled with anxiety that was enveloping thinking about all I was missing out on I felt like I was becoming my condition something that has been great for my lupus All around is yoga it helps both the mental and physical stain lupus puts on your body
Hello Kawena,
Lupus is a right nightmare for causing we foggyness of the brain, we forget stuff, half the time your minds trapped like your in a daze and like yourself i have to re-check on certain things...Lupus as alot to do with the central nervous system and it all stems from the brain and i've noticed i get worse when my symptoms in general with it are more active and some things can progress abit quicker than other's...the best way with Lupus is is monitor your symptoms, take alot of notice and when things are occuring again, you learn what's coming unless it's something totally different.
Terri :)
kawena312 said:
Hi, I am new to the group as well. I was recently dx in February 2013. I have found myself experiencing some cognitive decline as well so I was glad to see this post. I am not sure what's happenign and will be sharing it with my rheumatologist at the next appt. It is really bothering me. Today I checked the mail twice because I forgot I had already checked it, yesterday I couldn't remember if I had taken one of the meds already and I'm having to write everythign down. I'm asking the same questions more than once and this is really bothering me. I cannot function like this when I return to work they will think I'm an idiot.
Hi Erin,
I'm adding some information on this discussion which may help you regarding memory issues etc.
Hugs Terri :)
Erin said:
Lucy, hi it's nice to meet you my name is Erin and I have been coping with lupus for a little over a year now and was just diagnosed this month but it totally changed my personality I was sure I was going crazy especially during a flare I would have trouble remembering to do every day tasks and also struggled with anxiety that was enveloping thinking about all I was missing out on I felt like I was becoming my condition something that has been great for my lupus All around is yoga it helps both the mental and physical stain lupus puts on your body
"Thinking, Memory and Behavior"
In about half of people with lupus, the disease attacks the brain and spinal cord. Lupus can also affect the peripheral nervous system, which is made up of the nerve fibers that give skin and muscles the power for feeling and movement. These developments can be very frightening and frustrating. Thankfully, there are steps a person can take to make things easier. Doctors who specialize in these complications are called "neurologists."
What is the most common kind of lupus brain involvement?
Many people with lupus—at least one in five—have trouble thinking clearly at some point and experiences memory problems, confusion, fatigue, or difficulty expressing thoughts. Called cognitive dysfunction, the condition likely occurs because blood stops flowing as smoothly to the brain as it should. This also can happen when lupus antibodies cross the "blood-brain barrier," directly damaging brain cells in areas that store memories and other important information. Cognitive dysfunction may come and go, but often steadily worsens over time.
What is "lupus fog?"
A part of cognitive dysfunction, some people with lupus get spells of "fogginess" when, for several seconds or minutes, they can not get to information that they know is in their heads. They may read the same sentence over and over again, for example. Or struggle with a normally easy task, like balancing a checkbook or dialing a familiar number.
What can be done about cognitive dysfunction and "lupus fogs?"
Reassurance from loved ones helps a lot. So can behavioral counseling, physical or speech therapy, biofeedback, techniques for relaxing the body and mind, and concentration strategies. A lupus diary can be useful to track when fogs happen and what works for dealing with them. Medicines may lessen the fatigue or depression that makes thinking hard. Doctors are learning a lot about how lupus antibodies hurt brain cells and are testing medicines for dementia that might some day help people with lupus.
Do other brain problems happen in people with lupus?
Blood flow to the brain feeds brain cells with nutrients (food) and oxygen. Strokes occur when this blood flow is interrupted and brain cells die from the lack of oxygen, causing symptoms such as tingling sensations and problems with vision, speech, and movement (including paralysis). People with lupus have a higher risk for stroke, especially the third or so who have "antiphospholipid antibodies" that make blood "sticky" and more likely to clot and stop or slow blood flow to the brain. Although uncommon, inflammation in the spinal cord or brain's blood vessels also happens with lupus and can lead to paralysis, seizures, difficulty judging reality, and loss of consciousness.
Can lupus change emotions and behavior?
Some people with lupus have mild but noticeable changes in behavior such as unusual feelings of fear or lack of fear, or loss of interest or curiosity. More commonly, the fatigue and pain of lupus is draining to the point that a person changes his or her outlook on life. Corticosteroids and other lupus medicines sometimes make matters worse by causing weepiness or other exaggerated feelings. The "emotional rollercoaster" of lupus is something that always should be discussed with a doctor.
How is lupus brain involvement diagnosed?
A doctor can do a physical examination, test blood and spinal fluid, or take imaging tests or electrical studies of the brain. These sometimes help in figuring out what is going on. But a diagnosis often is difficult to make because infection and side effects from medicines can lead to the same signs and symptoms as active brain lupus, and no single test can show without question that lupus is the cause.
Will a person with lupus and brain problems be OK?
No matter whether the problem is mild or severe, there often are effective and surprising ways of handling lupus thinking problems, memory difficulties, and behavior issues. Counseling and anti-depressant medicines help many people. Support groups are a good place to hear about ideas on concentrating better, remembering important things, and thinking more clearly. Knowing that others live with the scariness and unknowns of lupus can also make having the disease less lonely. With time and luck, the researchers hard at work figuring out what can be done to stop lupus from damaging the brain will have some solid answers.