[lynnenoble]

Hi

I went to the docters yesterday because when I got up i felt really bad, my right arm is numb and it feel like I have pins and needles all the time. I also cannot use this arm for anything, like carrying shopping, opening doors. My hips and left leg was also in great pain. as was my right ankle. I felt sick and dizzy, I have also spent the last two days in bed. Sorry if this sounds a bit confusing I cannot think straight. I am tired all the time. The docter said it was a flare, like they have in lupus, but I am supposed to be borderline lupus, what ever that means. Can anyone tell me how long a flare can last, as I feel very stupid and useless to everyone about me. I am used to doing everything for everybody else not the other way about, although this is getting more and more common that I need help. I am getting very depressed about all this, and the docter is going try and get me a quicker app. with the rheumy, not that I have much faith in them. Sorry have to go, I am now in agony after typing this, hope someone can give me and answer, thanks lynne

 

[LolaLola]

Dear Lynne, I am guessing that you have had Lupus Blood tests in the past that were not particularly definitive. This is not unusual early in the illness.
If the Doc. thinks you have considerable inflammation he may consider giving you a short course of steroids. Your response to those would help quite a lot to discover if your problems are inflammatory.

We are all familiar with having been the one everyone turns to, but you can't do this at present. I hope you have some sort of good pain relief. IF not you need some. Some Docs. also give low dose antidepressants,just to give you better quality sleep. There are many options for symptom relief even without a diagnosis-BUT not all Docs. or even all Rheumatologists are up to date with Lupus and associated ailments. If you read through the posts here you will realise that I am telling it like it is!
Anyway, Welcome and we will all do our best for you.
x Lola

 

[Maia]

It's almost impossible to say how long it will last - I'm sorry for that. It can be just a day to much longer than that. Do your best to keep moving a little bit... I really believe that can help. Otherwise... many (((hugs))) to you and I will be thinking of you and hoping you improve very soon.

If that arm stays numb and you maintain those other neuro symptoms I think it may be worth at least a call back to your doctor to see if you should be evaluated by a neuro or investigated for some other causative factor.

 

[Pink Pearl]

Hi Lynne,
As Lola and Maia have said, a flare can last a day or weeks or months. It depends on each person and what that person's body is going to do. Getting the proper treatment and medical care has a lot to do with it. Other times, you just have to ride it out.
If you are battling "brain fog", it often helps to keep a journal for your doctor. Then, take it with you when you next see your doctor so you can go over what was happening.

Take care of yourself, eat well, get rest, and take your meds.

Incomplete lupus is often called so when the person does not meet the minimum of 4 of 11 symptoms. You can find the list of 11 symptoms at the LFA web: www.lupus.org
Remember, this diagnosis of 4 of 11 is made with OR without lab work. Some doctors get hung up on one or two tests, but the ACR determination is made on meeting of the 11.
Sally

 

[lynnenoble]

Thanks for your replies, i have had steriods the first time i had them they worked for the 2 weeks i took them then the 3rd week then i was back to normal, that was 11 months ago. I got the steriod course for 2 weeks at xmas but they did not work as they did the first time. I also had a chest infection. I am also on antidepressents and very strong pain killers, my blood work is borderline and has been for the last year. I do have a lot of the symptons in the list. I am now waiting to go for a mri scan.
Thanks lynne

 

[Clare.T]

Dear Lynne
I am sorry you are feeling so bad and I am very mistrustful of this borderline lupus business as clearly you are far from well. Do you know exactly what blood tests have been done and what was the problem ? You said in an earlier post they wondered if you had MS - one condition related to lupus is antiphospholipid syndrome sometimes called Hughes syndrome or sticky blood.
Without knowing better what's going on and causing these problems, and getting treatment the disease might be getting worse and causing lasting damage !

I hope you can get your appointment brought forward and don't have to wait much longer for the MRI.


Many hugs
Clare

 

[Katharine]

Hello Lynne,

I'm sorry to hear that your feeling so low. I tend to agree with Clare on that "borderline lupus" statement. It is not at all helpful when it is quite clear you need more effective treatment.

I am unclear from reading your post if you are already seeing a rheumy and/or a neuro and who the doctor is that gives you these occasional short courses of steroids.

While short courses of steroids are indeed very helpful and necessary at times, they are not the "only" long-term treatment option and I can't help thinking that there needs to be a more proactive response to treatment needed here.

If you are not currently seeing a rheumy or neuro could you try and get a referral as it is clear that you need more help than you are currently getting.

I'm just being pushy here as many of us have gone through years of pain and frustration partly through an unwillingness to make a fuss and complain. As your doctor doesn't really fully know you as a person, you may need to be complaining rather more loudly than you have been for him to sit up and take notice.

hugs to you :hug:
Katharine

 

[lynnenoble]

hi catherine
yes i am seeing a rheumy and waiting on another appointment to see her. I will be trying to push it this time as I feel very depressed and I cannot stand this pain any longer. I don,t know how i will feel when I get up in the morning and I have disabled husband who rheumtiod arthritis and a five year girl to look after. My docter is very good with me and sees me immediately when I need him, he is at the moment trying to get my appointment quicker
thanks for the replies
lynne

 

[Katharine]

Well I am most relieved to hear that. I am sure that with your husband's condition, you must know when to push and just not give in until something is done about it.

All the best of luck on that,
Katharine