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Old 06-24-2007, 12:00 PM   #1
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Join Date: Jun 2007
Location: Illinois
Posts: 4
popeyeslove HB User
Migratory pain? Does it migrate day to day or just flare up to flare up?

Hi,
I am new here. I have not been diagnosed yet, but my primary care doc thinks I may have lupus or "something lupus like" as he puts it. He is referring me to a rheumatologist, but they cannot see me until August 20th, so I am stressing.

I have been reading everything I can about lupus, fibromaylgia, and anything else that seems similar. However, I still have some questions. Can any of you help me out, while I wait to see the rheumatologist?

Q1)
I understand that the joint pain can be migratory. Sometimes, my knee will be in extreme pain, but that afternoon or the next day the pain may be more in my fingers or ankles. So, is it "normal" for the pain to migrate day to day with lupus or does it generally affect the same area during one flare up and then maybe migrate somewhere else during the next flare up?

Q2)
When in the sun or flourescent lights or stresssed out, my face and arms and neck get very red (my face becomes crimson!!);people are constantly asking me if I am sunburned. I have found some pictures on line and 2 of them seem to match my appearance.
However, it seems to be my whole face, although it is more pronounced on my cheeks and across my nose. Does this sound like a lupus type rash?

Q3)
The redness disappears after being indoors for awhile. This can happen several times a day or maybe only once in a day. Is this "normal" for lupus?

I am also going to include a list of symptoms I am going to take to the rheumatologist. If anyone has any comments or suggestions to give me on my list, I would appreciate it too.

I am so tired of being ill and no one knowing what is wrong.

Thank you for your replies.

Symptoms
Swelling: Last 6 months (approx) – comes and goes
1. Feet and ankles
a. Also Feet tingle/itch/and or go numb—6 months
b. Sometimes turn blue
2. Knees
3. Arms
4. Hands and wrists
Cramping: Last 12-18 months -- comes and goes
1. Feet and calves – more pronounced at night
Joint Pain: Since Late March – comes and goes
May affect one joint or several
Very painful
For 2 days straight it hurt so bad to even move then it eased up, but has not gone away entirely
a. Wrists
b. Elbows
c. Knees—have given me problems for several years, no one has ever found anything wrong though
d. Ankles
e. Neck (feels compressed)
f. Spine (feels compressed)
Vision—Last 6 months or so
1. Halos around lights
2. Objects in the distance have fuzzy edges
3. Can’t read street signs as well
4. Night time vision has worsened
5. Headlights and bright lights bother me
6. Double Vision -- Comes and goes
a. This has actually only happened twice since March – It is like watching a 3D movie without the 3D glasses
Motor Skills
1. Constantly dropping things –approximately a month
2. Bumping into things—12 months
a. Depth perception seems off sometimes, which causes me to misjudge and drop things or bump into things

Mouth
1. Sores in mouth, gums, tongue (usually painful, however, sometimes not) —10-12 years – comes and goes
2. Gums Bleed—2-3 years
Respiratory
1. Chest pain (not related to asthma)—Since last Spring
a. Feels like muscle ache, or pneumonia, or asthma – I often describe this as an elephant sitting on my chest
2. Shortness of breath
a. Sometimes associated with my asthma; other times I just feel like I am not getting enough air, but it is not asthma.
3. Rib Cage pain—last 2-3 years
a. Mainly in one spot only (both sides) – it is just very tender to the touch
4. Severe asthma –hospitalized for it several times per year
Heart
1. High Blood Pressure
2. Fast heart rate
3. Palpitations
4. Anxiety attacks
Head
1. Headaches—Since 2001
a. Sometimes seems like tension or stress headache
b. Sometimes a migraine
c. Sometimes I Can’t tolerate light, sound, movement
d. Feel nauseous
e. Severe Pain
Mood
1. Depression; Bipolar;—Since 2003
Skin
1. Face, neck, and arms get red when overheated, in the sun, stressed, certain lighting—NOT sunburn
a. People comment that I look sunburned or overheated, but I am not
b. The color is lobster red and it usually goes a way in a few hours
2. Upper back feels sunburned even though it is not—last 2-3 years
3. Dry skin—recent development—I have never had dry skin before
Miscellaneous
1. Frequent Urination -- Comes and Goes
2. Bouts of Constipation alternating with diarrhea
3. Nausea – Comes and goes
4. Hair Loss—10-12 years
5. Growth Facial Hair and chest hair – like a man—since 1995
Tire easily—for several years, but it has gotten much worse in the last year
1. Many days I have to fight for the energy to even straighten up the house
a. not sleep tired, just energy zapped
b. Some days worse than others; some days not tired at all
Insulin Resistant
1. Weight Gain
2. Before my hysterectomy in 1999
a. Menstrual periods lasted anywhere from 10 days to 3 months with severe bleeding and clotting
b. Anemic
i. Blood transfusion due to anemia in late 90’s
Other things to Note:
1. Have had tests in the past that show a low platelet count –usually normal upon re-testing
2. X-rays show granulomas in my lungs
3. Major prednisone use for asthma – More so in the last several years
4. I think Dr. Almousali (heart doctor) said that the left side of my heart is slightly enlarged, but he said he thinks it has been caused because of my asthma.
5. Had miscarriage in 1992
Surgeries:
1. Abortion –1983
2. 3 Cesarean Births—1984,1986,1993
3. D&C due to heavy periods—1989 or 1990?
4. Arthroscopic knee surgery (left knee)—1988?
5. Hysterectomy (heavy periods and anemia)--2000
6. Heart Catheter (found nothing)—2006
7. Repair damage done by angio-seal—2006
Diagnoses so far:
1. Asthma
2. Depression and/or bipolar
3. Polycystic Ovarian Syndrome/disorder
4. Metabolic Syndrome/disorder
5. Insulin Resistance

I am tired of being sick. Most of these symptoms come and go, but can be debilitating. I can’t get anything worthwhile accomplished because I am nearly always sick from asthma, in pain from whatever, or emotionally sick and depressed. I have very few days where I feel good.

 
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Old 06-24-2007, 03:49 PM   #2
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Join Date: Feb 2004
Posts: 4,968
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Re: Migratory pain? Does it migrate day to day or just flare up to flare up?

Hi & welcome to the group! I'm sorry to read your post---things can't have been easy for you for some time now...

In response to your question about pain migrating: mine sure did. For me, one day it would be screaming shoulders; the next, elbows---then some days, three or more joints. My pain is always symmetrical, simultaneously affecting left & right "whatever".

Your facial rash: From what I understand, yours sounds as though it needs checked out by a pro. Although other rashes can look similar---rosacea, for instance---especially in light of all the other things you describe, any facial rash should warrant very close attention.

Re your list: (1) Anything to add from your earliest years? (2) Meds, including dosage & duration (including any OTC's)? (3) Year of each Dx & by whom the Dx was made. (4) Plus, you could include copies of recent test results, if you have any.

I really, really hope your appt. goes well. I was treated by a variety of specialists (GP's, gastroenterologists, urologists, OB/GYB's, etc.) for different things, over many years. Little did I suspect that, for me, there was a "single bullet theory" no one had ever contemplated. I certainly am no doctor (to put it mildly)---but I think it makes total sense to have a fresh & thorough review done by a rheumie.

Another thought: there are some excellent lupus hardcovers available in most libraries & bookstores. If you want to do some reading while waiting for your appt., hardcovers by Dr. Daniel Wallace or by Dr. Robert Lahita would be a great place to start.

Meanwhile, I hope you keep posting here. I'll say bye for now. With my best wishes to you, Vee

 
Old 06-26-2007, 11:15 AM   #3
Newbie
(female)
 
Join Date: Jun 2007
Location: Illinois
Posts: 4
popeyeslove HB User
Re: Migratory pain? Does it migrate day to day or just flare up to flare up?

Thank you very much. I was beginning to wonder if I was crazy because the pain seems to move so much. I feel better knowing others have had this too. Although I am sorry anyone has to suffer through this. I told my husband, just the other day, if this is lupus, I don't want it; make them take it back.

Thank you for the advice on the improving my list. I already had a seperate list for my meds. I will add the dates and doctors for my diagnosises (did I spell that right?). I will have to try to remember my earlier years. Mostly asthma type stuff and major problems with my menustration.

I had read several other posts and saw the info on DR. Wallace and Dr. Lahita. I am going to the library tomorrow to see what they have. If not, Barnes and Noble here I come.

Thanks again for your help. I will be hanging around on the boards for a while. At lease until the rheumy says either yay or nay.

 
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