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JewelryJulie 05-19-2009 12:13 PM

Is chronic pain something that is experienced?
What would you say is the worst thing about having lupus? Is chronic pain involved? I fit a large amount of what was posted and wonder if this is a possibility for me. Thanks for your help.

goldenwings 05-19-2009 06:33 PM

Re: Is chronic pain something that is experienced?
Hiya JJ,

Reading your post, I am sorry but I am not sure whether you have an actual diagnosis of lupus or not, but yes chronic pain can be involved. Thing is though having an 'on the ball' rheumatologist if this is possible and the proper medications and help, should enable pain mangement to be sorted out for you.

As you know there are different types of lupus and only a rheumatologist can give a definite diagnosis and ultimately the right type of help you will need.

Take care

goldenwings :angel:

Angel MJ 05-20-2009 06:52 AM

Re: Is chronic pain something that is experienced?
hi jj - sorry you are in pain. meds can help manage ... bless the meds!
GW offered sound advice - if youv'e read the sticky posts and feel like you might have lupus then i'd suggest seek medical counsel - you need a good rheumatologist ... your pcp/primary or any specialist (a doctor you trust) should be able to give you a referal.
PS: there are 11 criteria (bloodwork is just one ... i think) and you need to have at least 4 (not necessarily at the same time)
Hope you get your answers!

goldenwings 05-20-2009 08:32 AM

Re: Is chronic pain something that is experienced?
Hiya jj,

further to my 1st post - one thing I must advise against is actually 'telling' the doctor that you think you have lupus. Some doctors can be very sensitive about patients telling them what they think it might be. After all we see them because we are unwell and in need of their help. If we go ready to say 'it is a, b or c' then they will not be too happy.

I know of someone who actually was told by the doctor "I am the doctor, I put myself through University to be a doctor, what are your qualifications in my field?" They do not like it when you 'tell' them what you think it is. By all means as I said if you are asked, just say 'might it be.....?'

If you go and have a list of your symptoms, yes that is ok, but wait until he/she asks all the relevant questions, which are usually about things going back into childhood. Then if you are asked what you think it could be, by all means suggest it might be an autoimmune problem like lupus. Be careful though again, as the doctors might be unhappy that you have read up on lupus and if you go with a definite off pat-list of symptoms, then they could say you are using the material you have read to diagnose yourself.

I am only telling you this so that you are ok when you go to see someone. It is very difficult and frightening to be unwell in the first place I know, but I would hate for you to be upset by any remarks made by a doctor who isn't very sensitive to your feelings.

Take care

goldenwings :angel:

JewelryJulie 05-20-2009 10:25 AM

Re: Is chronic pain something that is experienced?
To be honest, I don't know or feel "for sure" this is what I have. I just was reading the sticky and fit into quite a few of the criteria. I really just wanted to know what the day to day experiences are for those of you who know you have it for sure. Thanks.

VeeJ 05-21-2009 07:01 AM

Re: Is chronic pain something that is experienced?
Jewelry Julie, hi & welcome. Before I was Dx'ed, I'd had decades of problems that flared & receded, like a broken record: GI malabsoprtion, urinary frequency & discomfort, migraines, skin rashes (nonscarring, arms and upper torso), B-12 & Folate anemia, etc. Ongoing, day-to-day I usually had some degree of joint pain & pain along long bones of arms/shins; and fatigue seemed constant. Pain intensified during flare-ups, and also about a day before it rained (still does).

I'm a classic "subacute", in the sense my "major organs" were & are unaffected. Because my rashes & bloodwork were "minority findings", I had a horrible time getting answers, despite seeing many specialists (gastros, urologists, dermies, and rheumies). "Milder" can take much longer to Dx, is what I sense... Add to that I "looked" reasonably normal... The drs. I saw were nearly all wretchedly rude and dismissive. 'Twas mind-blowing!

I hope this "lupus version" gives you one more example of some of the possibilities: the range is so wide! Give a yell anytime, OK? Best wishes, Vee

blessedbeauty 05-21-2009 03:31 PM

Re: Is chronic pain something that is experienced?

I am 26 years old and I have Lupus sle. I was dx'ed when I was 22. Some of my experiences with Lupus are...

aching joints (ankels, knees hips, etc.)
severe anemia (had my first blood transfusion 3 weeks ago)
extreme fatigue (this is the worst for me)
G.I problems (dx'ed with Chrons disease at age 24)
frequent urinating

Thank God my kidneys, heart, lungs, etc have not been affected. I saw a kidney specialist in Feb and everything at that time was ok but have to have kidney function checked every two months. Lupus is a hard disease that not only affects you physically but mentally as well. I would see a rheumatologist right away for possible diagnoses. It is my prayer that you do not have Lupus but if you do get the best doctor in your area, get plenty of rest (this is really important), take your meds properly, learn all that you can about the disease, and surround your serf with positive family members and friends that are welling to be there for you.

Blessed Beauty

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