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Discussion Starter · #1 ·
Hi I am also new to this website!! I will try to keep this short. I started having problems in April of 2008. I was unsteady, imbalanced could not feel pain, went blind for a few minutes. Burning on my legs and side. The list goes on..... I also have incredible pain in my legs. It is a deep pain and it does feel like my bones are going to explode. I go back to my Rheumy in Jan. I hope that she can help me with this. The burning and the unsteadiness has gotten better I am on the malaria meds 200 mg a day. Maybe if I was on a higher dose? My brain fog and memory of the last year is totally wasted. I really don't remember to much. Is there any help for that? I also take vitamins like they grow on trees. Any ideas how to be helped would be great. I was just diagnosed with lupus SLE in November. I am also having a problem sleeping
or should I say falling asleep at night. I read that this is very common. If anyone has a suggestions I would love to hear about it!!
:rotfl::blush::p
 

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Hi Holly and welcome :)

I'm sorry you're feeling so rough. It sounds like it's good you're seeing the rheumy in January. It's great that the plaquenil seems to have already made a little difference - it is often a med that takes a very long time to kick in. You wouldn't usually be put on a higher dose of plaquenil unless your normal body weight is quite high. However, people are often given other meds in combination with plaquenil (which remains the very important baseline). These can range from a short course of prednisolone, to help gain control of a flare, to other disease modifying drugs such as immunosuppressants.

The thing is that it is important, when you see your doc, not to play down your symptoms. Remember that feeling like that is not acceptable to people in general. Unfortunately part of our "accepting the disease" process, often leads us to accept a quality of life that no-one else would.

There are plenty of things that can be tried to give you further relief and you need to be convinced of that in order to be able to dicuss it with your rheumy.

The brain fog is something that is often very difficult to treat. One of the problems is finding the cause. I had a good deal of brain fog through my "normal" disease process so that when I was in an active phase of disease (I have VERY long flares), I would suffer terribly from brain fog. That went away once the disease was better controlled. So, you may well find that once your disease is under proper control, things will get a lot better.

I did then have further cognitive issues but they had a different cause and have now been 99% resolved due to a new med.

Good luck for that appointment and do keep us posted,
hugs :hug:
Katharine
 

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Hi Holly from your neighbor in New Jersey.

I am sorry about your diagnosis but glad you found this place. You will get much needed support here and gain a lot of valuable information.

I recommend a book by Dr. Daniel Wallace called "The Lupus Book" for folks newly diagnosed. It is well written in layman terms and easy to understand. Once you read it you will understand a lot more and then you can pass it on to family members so that they can understand too.

All of your issues, pain, sleeplessness and even going blind is something I have dealt with too along with a lot of other folks I am sure. I am wondering why your only on 200mg of Plaquenil daily? Most of us who take Plaquenil are on 400mg daily.

Anyway, I do hope to get to know you better. Come join us in the chat room sometime.:wink2::wink2::wink2:
 

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Discussion Starter · #4 ·
thanks

Thanks for all that replied. I just wanted to let you know that I do have that book and it is wonderful!!! It does have GREAT info in it!! I will keep checking in with everyone!! Thanks again!!:rotfl:
 

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Sorry, just wanted to add. I thought you said plaquenil 2x 200mg! Yes, 400mg would be a normal dose unless you are very light and small. I must be getting old, haf reading things - sorry.

Katharine
 

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Welcome Holly,

Sorry that you have sle lupus, but glad that you found the site. You are right about the falling asleep, it seems to be one of those things most of us share lol. Well, I put a small tv in my room that runs all the time and when I have trouble falling asleep I can lay there and I will drift off watching it. If I can't fall asleep then at least I am not bored but tv puts me to sleep not sure why. And no I don't watch things called infamusials lol. Well, not sure I helped any but glad to meet you just the same and please joint us in the chat room anytime.
Tammy
 

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me too

Hi Holly,

I'm new to the site as well and just entered my introduction post on this thread, then read yours about the bone pain. You describe exactly as I described to my doc - that my bones feel they will explode. I actually made them test for me multiple myeloma earlier this year because I was just certain that I had some sort of rare cancer causing my bones to hurt that way.

I'd say I've had at least 75 doctor appointments over 5 years before finally leading to this potential diagnosis. Not happy to maybe have lupus, but SOME diagnosis is better than this not knowing.

Look forward to getting to know you better!
 

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Hi Holly and :welcome:

I agree that you will probably do better on the normal dose of 400mg Plaquenil daily, that's what we normally take unless you are very underweight.

There are a few possibilities for your deep bone pain. The first place I would look would be for a vitamin D deficiency, it can cause that sort of pain and as many of us don't have a diet high in Vitamin D and don't get much sun exposure it's worth testing for. Some people also have stomach problems which interfere with processing and absorption of Vitamin D.

Of course it's also possible that it is some kind of nerve pain, in which case something like Lyrica or Neurontin would help, some of us with neuro problems take that and it does help.

If it's not pain preventing you from falling asleep then it's possible you may need a low dose of antidepressant to give you a more restful sleep. Around 30% of Lupies also have Fibromyalgia and it's hard for them to get good quality sleep. This starts a neverending cycle of wakefulness increased pain and also understandably doesn't help the Lupus. We need all the rest we can get.

I hope you have a good Rheumy and she is able to help you in January,

Take care,

Lily
 

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Welcome to the Forum Holly :)

It sounds like you will have a lot of questions for your Rheumatologist in January. Dont forget to write everything down beforehand so you dont forget things on the day.

Do you have any prescribed pain medications? Make sure you discuss managing the pain with your rheumy in January.

You said you had trouble sleeping and Lily mentioned Fibromyalgia as a possibility. Its important that you talk to your doctor about your pain levels and sleep problems. There is a trigger point test they can do for fibromyalgia and your Rheumy may want to check and see if you respond to these trigger points. Here is a small image of the 'trigger' pain points which are common in those with Fibro.



Also I notice that you said you took a lot of vitamins. What kind of vitamins are they? Just be careful not to take anything that is designed to boost your immune system as thats exactly the thing we DONT need. People with Lupus need treatment to dampen down immune activity - not increase it.

Take care and keep in touch. Nice to meet you
Joan:rose:
 

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Hi and welcome to the board,
I have dealt with lupus most of my life, but was not diagnosed until 20 years ago. I also have fibro, plus sjogren's, asthma, degenerative osteoarthritis, etc.

I found that I was able to get a much better rest by putting 4 inches of eggcrate pads on my bed. It helps to take the pressure off trigger points and I can sleep easier.
I am also careful to make sure that I have enough bedding to stay warm through the night. If I need to, I wear socks to bed to keep my feet warm. I used to use an electric blanket but found I do better if I don't rely on that for a warm bed. I bought a set of fleece sheets this fall, and found that I sleep much better if I use a flannel bottom sheet and the fleece top sheet.

When you see your doctor next month I will suggest that you take all your questions and comments written down. My doctors love this as it makes sure we cover all points and use our appointment time effectively.

I have put together my medication list organized by showing each doctor, the speciality and phone # for each doctor. Under each doctor's name I put the medications that doctor has prescribed. I also list all my medication allergies, and all conditions I have been diagnosed with.
I also make sure that all my doctors know they have my permission to contact each other should they need to.

Good luck with your doctor visit, and stay relaxed thru Christmas and New Year's.
Sally
 
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