Chronic Pain - Lupus?

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New Member

Date Joined Jun 2010
Total Posts : 5
   Posted 6/29/2010 8:00 AM (GMT -6)   
Over the course of the last 8-10 years I have had pain just about everywhere in my body. Most of my pain occurs when I'm stationary - even for short periods of time. It varies in degrees but it is always present. When asked where the pain is (as Doctors usually do), I can never pin-point any one place. I wasn't even sure if it was my bones, my muscles...or both - but now I think it's all muscle. It's definitely becoming more and more of an impedence in my life and I'm not sleeping well at all.

For now, I work for myself. I'm a 43 year old property title searcher and have been lucky enough to co-ordinate my schedule around my pain and tiredness. Unfortunately, all real property will eventually be in what's called the "Land Titles" system here in Atlantic Canada and I will most likely have no more work in this field of interest. Consequently, I'm anxious and worried about the future. I'm confident that if this pattern of no sleep and pain continue, I will never be able to work a "regular" full time job. The anxiety has now added itself to my list of woes. I feel so pathetic - LOL!

Anyway, I have two pre-existing conditions and for now I will call them "benign". They are hypothyroidism (managed with synthroid) and what's called a "prolactin secreting tumour" (pretty much harmless I guess). I'm told by my physicians that my thyroid is under control but that my tumour needs to be checked at least once a year to make sure it's not growing. I do believe that the tumour acts-up at least once or twice a month leaving me in a state of profound tiredness (almost as though I've been slipped a sleeping/pain pill). I'm beginning to become more aware of the timing and mark it down. Usually after a spell (which lasts about 7-8 hours), my right breast will secrete a tiny amount of fluid. That's when I know it was my tiny tumour acting up. Sort of my confirmation.

I have a new doctor and she is very good. She sent me for multiple x-rays and blood tests. Blood tests did not indicate that I have any form of arthritis and my x-rays are fine. She did indicate that my "ANA" test (usually associated with lupus but not specific to lupus) revealed a small chance I may have lupus ("but not necessarily"). Further blood tests will be required

I took a boo at some sites that talked about lupus and although I appear to have many of the symptoms, there are some I definitely do not have (i.e. butterfly rashes, fevers, etc.).

Any responses are welcomed.

Thanks for reading,

Veteran Member

Date Joined Aug 2006
Total Posts : 9664
   Posted 6/29/2010 8:46 AM (GMT -6)   
Diggycat, why are you not on a medicine for your prolactin tumor??? They make 3 Medicines to control this
and I thought you should know...This is not something that should be just left alone as it can grow. I'm on the medicine "Cabergoline"
and it's helping I rarely leak anymore, I just don't understand why they would not have you on a medicine for this...
It's good that your thyroid is under control. but you should be getting a medicine for your prolactin levels too...Please
ask your doctor if there are medicines for this, okay....that way you can avoid future surgery...Surgery to remove this is
not as easy as it always sounds...Sorry, I'm just concerned about you... and to let you know your not alone in that...
as for the pain everywhere in your body that might be fibromyalgia. and it can be hard to over come at times...
Good luck with your bloodwork and Keep us posted

Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 6/29/2010 9:37 AM (GMT -6)   
Welcome to Healing well Diggycat.... You will find a slew of wonderful people who can and will support you in anyway that they can.

Chartreux is right there are a few meds out there to help in this area. Please ask you doc when you get a free moment. Having pain that is unkown of its origin is stressful. I went years without Dx's and can feel your frustration. I went to so many different doctors before it started to fall into place. I also had to do alot of research myself to bring to the doctors to look at.

I hope you find some answers in your search. And please keep us informed...

Kidney Diseases and Disorders
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 6/29/2010 9:59 AM (GMT -6)   
Hi Margaret,

Welcome! I'm so sorry for the pain that brings you here though!

I don't know much about the tumor issue, but Chartreux gave you some great advice there! What is your hypothyroidism due to? Is it autoimmune? I certainly hope that you don't have lupus, but if it turns out that you do, there's a great lupus forum here at Healing Well!

Pain and symptoms of lupus....even high ANA, can be due to other things. As Chart mentioned, fibromyalgia might explain your pain, but my first thought, because of my own medical history and my own surprise diagnosis last January, is to ask you if you've ever been tested for Lyme disease? If not, you might want to be tested. I certainly hope that's not your problem, but Lyme disease triggered both lupus and fibromyalgia in me, as well as autoimmune hepatitis and rheumatoid arthritis.

IF you should get tested for Lyme disease and IF you test positive, unfortunately you're in Canada and most doctors in Canada know very little about Lyme disease. Most Canadians I know of with Lyme come to the States to be treated. I know of a Lyme-Literate doctor (LLMD for short) in New York, and if you want his name please email me privately. Otherwise, the Lyme disease forum here has several Canadian members and you would be more than welcome to ask questions over there too!

Anyway, I'm just throwing out possibilities for you to think about....I wouldn't wish Lyme disease on anyone! Or lupus or fibro!

Please let us know what your tests reveal!

Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

New Member

Date Joined Jun 2010
Total Posts : 5
   Posted 6/29/2010 2:31 PM (GMT -6)   
Hi and thanks to all who responded! Such a warm welcome. I am really embarrassed to admit I know very little about the prolactin secreting tumour and fibromyalgia. All I know is that my doctor indicated to me that as long as the tumour wasn't growing, it shouldn't be too much of a problem. We should "just keep a check on it with yearly MRI's". Awhile back, a specialist prescribed something for me to, in essence, shrink the existing tumour (and for the life of me, I can't remember what it was called). Actually, a rotten memory is part of it - LOL! The limited research I did indicated the possibility of a bleed from this medication...and that scared me, so I opted out.

My current physician said that certain blood tests would steer us in the direction of fibromyalgia (if that's what I had). She said there was nothing to indicate that I had it.

My hypothyroidism is autoimmune. That took a long time to diagnose. I felt really poopy for a long time before something actually showed up in my blood work.

As far as I know, she will be conducting different types of blood tests to rule out Lupus. I only hope this gets sorted soon because of the accelerating pain and sleeplessness. I'm really not a morning person. For that matter, a middle of the night person...or all night person!



As far as Lyme disease - it has crossed my mind

Veteran Member

Date Joined Aug 2006
Total Posts : 9664
   Posted 6/29/2010 5:02 PM (GMT -6)   
My endocringologist, said that it's not always good to have a wait and see on this, so please make an appointment with a specialists
and until you try a medicine you really don't know how you can react, but there are 3 meds that are used today to treat this, so please try to get
back into the specialist and get this taken care of...and Cabergoline has the fewest side effects and name brand on this issue works better than
generic so make sure your pharmacy will be able to fill this medicine...Cabergoline helps to control it, to keep it from growing and yearly bloodwork will be required...
Mine was orginally enlarged 9mm and just last year's MRI has it reduced to 1-2 mm, so medicine can help....out of control prolactin levels can effect
your monthy cycle too....I've seen an improvement in that too....
and I will be hopeing it's not lupus..and at least your thyroid is in control that a good thing...
Good luck to you and keep us posted...

New Member

Date Joined Jun 2010
Total Posts : 5
   Posted 6/30/2010 7:51 AM (GMT -6)   
Thanks Chartreux! I will explore that option. I'm going to ask my doctor to get me into the specialist again.

Hugs to all!

Veteran Member

Date Joined Sep 2008
Total Posts : 1670
   Posted 6/30/2010 8:06 PM (GMT -6)   
Hi Margaret, because so many auto immune diseases cross disease boarders it may be worth getting a referral to a rheumatologist too. They will recognise symptoms far more readily than your GP and it is common for boodwork to show nothing in the early stages. Rheumy's rely on more than just blood tests to diagnose auto immune inflammation.

They are diseases that are better treated earlier rather than later when permanent damage can occur. Not meaning to scare you or anything but follow up and don't ignore your pain, best wishes, golitho

New Member

Date Joined Jun 2010
Total Posts : 5
   Posted 7/1/2010 9:02 AM (GMT -6)   
Thanks Golitho - I'm always willing to take advice and consider all possibilities. I guess the only way is to keep at my doctor until the right referral comes along. I have a feeling it's going to take a long time.

You're absolutely right. I don't think blood tests reveal everything either.

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