Medical Questions > Conditions and Diseases > Lupus Forum

Lupus Complications ? pain in joints/knees/fingers, swelling

Hi i don't know where to begin! I will try to condense for sanity's sake. Start off with my grandmother had lupus, she died from complications of leukemia. I feel i have lupus as well. After the birth of my third son at age 24, 14 years ago, now i am 38. Well, after he was born, i noticed joint pain, sore throats, feeling like i had the flu off and on, plus i would have things like thrush in my throat(which only people with bad immune systems get) so the doctor told me. I would get illness that people with aids or diabetes would get. Tested for everything under the sun. All came back with negative. Oh, i also developed osteopina at age thirty with no explanation. They could not figure out why someone at 30 years old had that. I had lost two inches in height that is how they found out. I also broke my ankle and the bone would not heal for over a year and 1/2. They finally put in donor bone and it took. Again all my blood tests came back negative. The doctors could not figure it out, not even the rhum dr. He just slapped fibro label on me. That was 8 yrs ago. I just figured it was all in my head and just dealt with it. Since i was 24 i have to take massive amounts of ibuprofen to get through a day. I have been taking 600mg 4-5 times a day for the last 14 yrs. I have had numerous bladder infections and kidney infections. But my dr says they haven't found protein in my urine so she doesn';t feel my kidney's are malfunctioning. But she wants me to see the rhume again. My symptoms are, bouts of time where i feel like i have the flu, pain in my joints, mainly knees, fingers and toes, swelling in my legs fingers and toes with tingling(the only word i can come up with), sores on the roof of my mouth, swollen glands, sore throats, my throats is swollen most of the time, low grade fevers, urinary infects, yeast infects, it seems my temperature gauge is broken(thats the only way i know how to describe), sometimes i feel cold in my hands and feet and sometimes i feel no hot i feel like i am on fire. I know this is long and i am soo sorry. There is a lot more but this is the jist of it. If anyone wants to respond that would be great.
Thanks so much-Julie
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replied August 19th, 2007
You Sound a Lot Like Me--looking For Answers
I know this is long too---I am 36 and suffer all the time.

Something is wrong and I need help finding out how to treat my symptoms. It seems like my doctor treats each symptom and then something else starts, and the other one continues.

I will list my symptoms any advise is appreciated. The doctor keeps telling me that everything is normal but some of these things cannot be in my mind--sometimes I think I am making it all up. I have been told that my lupus test (ANA) is negative. The other response from doctors is “you are overweight—what do you expect.”

Visable / Diagnosed Symptoms

--Panniculitis-with Erythema Nodosum confirmed by biopsy---I thought I just had spontaneous bruising but the dermatologist I am seeing for the acne took a biopsy of the bruises.
--Acne—just started with in the last year—never even had it is a teen and is getting much worse on my chest and back, if I spend 5 minutes in the sun—I get pimples on my face, neck, chest, back, arms, stomach, and legs.
--Red spots on my chest, and sides of abdomen (I did not write down what they are called but the dermatologist said they are tiny blood vessels that have ruptured under the surface of the skin—and they will never go away)
--Ganglion cysts—hands, wrists, elbows, shoulders, knees, anchles, feet.
--Ulser on my tounge that had to be removed (biopsy was normal), but when the skin rashes get worse it reoccurs
--Sheath cysts on tendons (not the same as ganglions but also painful)
--Carpal tunnel—surgery to fix (with ganglion cysts)
--De Quervain's tendinitis–surgery to fix (with ganglion cysts)
--Planar fasciitis—both feet had surgery to fix
--Pleurisy –Two instances in the last five years.
--Unexplained blood in the urine that self resolved.


Non visable symptoms

--Pain in all my joints and I had this when I was much thinner.
--Fever for no reason that will last for weeks/months at a time.
--Daily weight fluctuations (up to 12 lbs in two days), when periods of higher weight come on I am hardly able to move my joints without PAIN, even my toes hurt to move.
--Periods of being tired, so tired I have to dose up with a lot of caffeine to make it thru the day.
--I am always HOT, like I am burning up from the inside, I perspire when others are cold. I joke that my thermostat is broken. This is also at night when my sheets get so wet I have to change pajamas during the night.
--Periods of hair thinning, which grows back in then starts over again.

I have no idea where to start figuring out what is wrong—but when I started doing research the only common thread is lupus. I need help figuring out what is wrong so I can get it treated. I have no family history of lupus.
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replied August 19th, 2007
Lupus
HI,
I am frustrated as well. I do not think this is all in your head. I know how you feel, i think we all second guess ourselves, and i believe that is a sign it is not in our heads!!!! My primary dr told me you do not have to have a positive ana test. She believes mainly the symtoms over many years amongst other clues are proof enough. But somewhere as the disease progress the blood work will show positive results. My rhume dr, told me 8 yrs ago that it sounds like lupus, but the ana test came back normal and i do not get the face rash, so he believes it is not lupus, it's fribromyalsia. Which i do not agree, i felt like he just couldn't find concrete proof in the blood, so he just slapped that diagnosis on me. As far as i know fibromyalsia does not cause illnesses, just pain and fatigue. But my prim dr, told me she wants me to get checked again by the same rhume dr, it's been so long, and my symptoms have gotten wide spread and more often, and she believes it is lupus. So i have an appointment in october. I do not think weight has anything to do with it. My grandmother was overweight and she had lupus. I would not give up, keep going to a doctor that will actually listen. Take care and thank you for your post. Julie
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replied August 19th, 2007
Re: You Sound a Lot Like Me--looking For Answers
I am sorry i am new and i tried to respond to your post to me, i guess i did it wrong, i am not sure even this is going to work. But if you look at the lupus forum you will find a reply under JPH360 posted today 8-19-2007
janitazim wrote:
I know this is long too---I am 36 and suffer all the time.

Something is wrong and I need help finding out how to treat my symptoms. It seems like my doctor treats each symptom and then something else starts, and the other one continues.

I will list my symptoms any advise is appreciated. The doctor keeps telling me that everything is normal but some of these things cannot be in my mind--sometimes I think I am making it all up. I have been told that my lupus test (ANA) is negative. The other response from doctors is âspam�you are overweightâspam�what do you expect.âspam

Visable / Diagnosed Symptoms

--Panniculitis-with Erythema Nodosum confirmed by biopsy---I thought I just had spontaneous bruising but the dermatologist I am seeing for the acne took a biopsy of the bruises.
--Acneâspam�just started with in the last yearâspam�never even had it is a teen and is getting much worse on my chest and back, if I spend 5 minutes in the sunâspam�I get pimples on my face, neck, chest, back, arms, stomach, and legs.
--Red spots on my chest, and sides of abdomen (I did not write down what they are called but the dermatologist said they are tiny blood vessels that have ruptured under the surface of the skinâspam�and they will never go away)
--Ganglion cystsâspam�hands, wrists, elbows, shoulders, knees, anchles, feet.
--Ulser on my tounge that had to be removed (biopsy was normal), but when the skin rashes get worse it reoccurs
--Sheath cysts on tendons (not the same as ganglions but also painful)
--Carpal tunnelâspam�surgery to fix (with ganglion cysts)
--De Quervain's tendinitisâspam�surgery to fix (with ganglion cysts)
--Planar fasciitisâspam�both feet had surgery to fix
--Pleurisy âspam�Two instances in the last five years.
--Unexplained blood in the urine that self resolved.


Non visable symptoms

--Pain in all my joints and I had this when I was much thinner.
--Fever for no reason that will last for weeks/months at a time.
--Daily weight fluctuations (up to 12 lbs in two days), when periods of higher weight come on I am hardly able to move my joints without PAIN, even my toes hurt to move.
--Periods of being tired, so tired I have to dose up with a lot of caffeine to make it thru the day.
--I am always HOT, like I am burning up from the inside, I perspire when others are cold. I joke that my thermostat is broken. This is also at night when my sheets get so wet I have to change pajamas during the night.
--Periods of hair thinning, which grows back in then starts over again.

I have no idea where to start figuring out what is wrongâspam�but when I started doing research the only common thread is lupus. I need help figuring out what is wrong so I can get it treated. I have no family history of lupus.
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replied August 19th, 2007
Active User, very eHealthy
Lupus
Julie....I'm so sorry that you have suffered so long with so many symptoms. At the age of 35, back in the 1960s, my mother started showing symptons of skin cancer and rheumatoid arthritis. She did spend a lot of time in the sun and usually had a year-round tan.

At that time, lupus was unknown as a separate disease and doctors were baffled by all of the symptoms occuring simultaneously. She shuttled from doctor to doctor, specialist to specialist. After about ten years of suffering and not knowing, they finall diagnose a systemic disease called--Guess what? Fibromyalgia!!!

Another eight years roll by and she has been taking 20-30 different meds a day for all the symptons you and janitazim mentioned. Finally, she develops arthritis so bad she can't walk or lift anything. That leads to a trip to Houston (we lived near San Antonio) and an evaluation by a lupus specialist. He was one of the first docs to recognize lupus and its connection to the autoimmune system.

As feared, she tested positive for systemic lupus. But, alas, it was too late to turn around the damage which had already been done to her body. They put her on a regiment of drugs to slow down the progression. But she was in constant pain and started to drink to dull it and became an alcoholic too.

It was very difficult to watch a beautiful woman slowly waste away with the ravages of this insideous disease. She was 5'7" and 120 pounds when the symptoms started manifesting themselves and, when she died in 1990, she had shrunk to 5'3" and 88 pounds. The lupus specialist had told us that it is possible that you could have lupus all your life and never have symptons, but most women do and, like my mom, the sun is usually the catalyst. I have lived with the chance of lupus myself because many docs think it is hereditary, but my first cousin, Karen (same age as me), got it in our family.

Julie, I hope you do get further tests to ease your mind about whether you have it or not. Good luck and I KNOW that this is not "all in your head." No one knows a woman's body better than you know yours, so stick to your guns.

Rick
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replied October 5th, 2007
It's Not In Your Head
We feel what we feel, just because Science hasn't figured it out yet doesn't mean it's not real; the world "was" flat til proven other wise, right!
I have a great Fibro book that I lend out to friends and think you should check out. The book is titled "Fibromyalgia & Chronic Myofascial Pain Syndrome A Survival Manual, the authors are Devin Starlanyl, MD and Mary Ellen Copeland MS, MA, mine has a copyrite date of 1996 but I think there is a newer one.
Every day I put my feet on the floor I thank God, I believe you understand my comment! As the years have past I started taking herb & vitamins which I feel have helped me. I also have a couple of books on that if you are interested. I have read almost everything I could get my hands on; unfortunately sometimes my memory fails me and I can't even put the right words together. My husband and Momma hate when I talk like that but it's true.
I hope you are feeling better today. I think the best thing is to tell your doctor that what they are doing isn't helping and is effecting your quality of life. They hate that phrase, it really gets them hopping. First go to the Library & look for my fav fibro book I think you need some support it will provide.

I wish you the best
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replied June 26th, 2012
What do you think is causing my edema and all my pain?
I have been in severe pain off and on over 15 yrs. My pain has been all over and I too, have been diagnosed with fibromyalgia and CFIDS. about 15 yrs, ago!! Recently, After almost not being able to walk and hurting so bad, the p ain stopped and I swelled from my knees to my feet! I am so confused. If I am off my feet all nite and part of a day, the swelling goes down, once I am on my feet again the swelling comes back! From last nite til this morning the swellimg went down and my weight went down from the nite before 7 lbs. CAn someone help me. I go from Dr. to Dr. I forgot to tell the Neurosurgeon that I saw last week that I had the non crippling polio as a child. My MRI have also shown that I have bulging and herniated disc with fragments. In athe past 5 yrs. I have had the 3 shots out from the spine and then about 1 yr, ago I had to also be put to sleep for an SI Joint injection, because of so much pain in the rt. leg joint! At this time I could not walk with out help and escruciating pain. I just turned 60!
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replied July 6th, 2012
You all sound like me. I try to ask all the questions I can think of but I feel like noone really knows, understands or even cares about lupus. I am a single mom and my job is being threatened because I have had so many flare up's lately. Most days I am so tired after work I can barely drive home. I am also experiencing numbness and tingling in my hands and arms and the swelling in my feet and ankles is horrible. That is just a little of what is going on with me. Can anyone lend some advice on how to control these episodes? Like I said my job is on the line here.
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