[marcille]

I wrote August 18th about being diagnosed with lupus and put on prednisone I am now on plaquenil too. It seems to be helping. One thing I want to ask is does anyone else have neurological involvement and severe pain with their lupus.
I had been having severe tremors for a long time. they have gone away since I have been on plaquenil.
I will be posting more frequently as I feel better. I still get severely tired.
I also would like some advice on how others deal with reactions from friends because they are not familiar with the severe fatigue lupus can cause any way have a stupendous day Jo Ann-----Marcille

 

[lazylegs]

Hi Marcille,

I am sorry to hear you are experience neurological pain. Have you been tested to find the cause of your neuropathy? It can be caused by Lupus, however there are many other causes also.

I have neurological involvement also. There used to be pain but the last 3 years I have been numb, only an occasional zap of pain. I also have tremors that increase or decrease with disease activity.

Unless someone is in your shoes they will not understand your fatigue. Most people tend to say they are really tired too. However, the fatigue we feel is much more than tired. I just let people see that I am not giving up and concentrate on trying to get enough rest so I can stay stable. They either accept it or they don't.

Take care,
Lazylegs

 

[Katharine]

Hello Marcille,

I'm glad to hear that the pred and plaquenil seems to be helping. Hopefully their effects will become far more visible in the months to come, especially for the plaquenil which takes a while to kick in fully.

Quite a few people here have neurological problems such as neuropathic pain but, as Lazylegs said, there can be many causes and it would be worth getting that ckecked out. When I began treatment I was only seeing a rheumy but she soon sent me to a neuro. I see her regularly now just to keep an eye on things and get nerve conduction studies done. For me things have remained stable on that side and the neuro has been able to help a lot with neuropathic pain I had in my feet and hands.

I don't try and explain at all to anyone about tiredness or anything else. Of course, I am lucky as I am self-employed and was able to transfer the tiny amount of work I do to home. I organise my day as I want to and rest when I need to. As much as possible I try and make a joke out of it. If people ask me to do something I just say that I have retired with a big smile on my face. They're often quite taken aback (I'm 36) but it does shut them up!

Friends are easier as I have gone past the age of pub crawls :lol: No, actually, I live in a really quiet country area and, as we're older with kids (and our friends are too), we tend to invite people around for a meal rather than drive to the nearest city to go clubbing. We do still go out from time to time but I know that if I'm going to do that, then that is the ONLY thing that I can do that day. So, if we're going out in the evening, I will make sure that I don't go shopping or have to do anything else and I will rest during the day (sleep if I can).

Katharine

 

[LolaLola]

Hello Marcille,
You are still in a time of huge adjustment yourself to being ill. Friends can be thoughtless, relatives can too! This is something we all seem to struggle with.
Save as much of your energy as you can.
When you have adjusted better to your diagnosis you will find that most of the time you can cope better with silly remarks from others. Having said that none of us cope all the time!
x Lola

 

[Whisper]

Hi Marcille

I too have been recently diagnosed and put on the same meds as you. I am still waiting for a few test results and then will be referred to an entire treatment team.
I have neurological involvement. The cortisone (prednisone), is working fairly well after a week. I couldn't touch material at all, pain shot into my teeth from my hands. I also get muscle spasms
The plaquenil apparently takes a little longer.
I also get severely tired and until my diagnosis had to take pain tablets just to get out of bed in the morning.
People don't understand, because you can look ok, but feel awful. I couldn't make it to my brothers bday party, cause I couldn't get out of bed that day. I don't have too many people to explain it too and if they don't accept how I am its their problem, not mine.
I guess this is a disease where the first person you need to worry about and take care of is you.

W

 

[MichelleAnn]

Marcille,
I also started out with Neurological involvement and my first doctor was a neurologist. I had tremors, severe pain, falling over for no reason, limping, headaches and other things. The first high dose of prednisone took along time to work but it did. I was on Prednisone for months. It took me a few years to get a diagnosis of Lupus seeing many doctors and finally my blood work came back positive for lupus. Now, when I start a flareup of Lupus, the neuro symptoms return, I know to start prednisone at 60mg and call my rheumy to let her know. I can take 5 to 10mg daily if I need. I recently weaned off the prednisone, not sure a good idea, but I have weight to lose from being on it so long. I need to buy new clothes if I dont lose the weight. I also take plaquenil, Ive not noticed much difference on it except I tend to sleep less but still feel that bone tired exhaustion. The pain is unbearable at times, it never goes away and becomes overwhelming. My cognitive is not the same, but Ive learned to deal with it and find ways around it. Even cooking is hard for me, following the steps and cooking more than one thing. But I do it, its good therapy. This is a great website with alot of information that can help. I know many have Neuro. symptoms. Take Care!!