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Old 04-05-2004, 12:51 PM   #1
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GracieGirl HB User
Autoimmune disorder or back pain?

Hello,

I usually post on the back problems board, but I am not sure if that is my problem anymore. I have 4 drs and they all seem to say different things. My family dr seems to think I have some connective tissue problem, and my rhuemy thinks I have lupus. The others seem to think it is just my back. I obviously do not know what to think. The problem with all this is that nothing shows up in my blood work. The rhuem dr says that I could have lupus, but it is not showing up. I don't know. I know I have a back problem (DDD and facet arthritis), but I also have a few "unusual" things that do not relate to my back. These include:

-Mouth sores (although I was on vioxx, and it could be a reaction from that)
-muscle spasms (in my back)
-wierd rash on my back (not itchy though)
-strange burning sensation in my stomach
-night sweats occasionally
-afternoon chills (so cold fingernails turn blue, not painful though) off and on
-an Mri that showed trace amount of fluid on lungs (since has cleared up)
-TMJ
-history of skin eczema

Could this be autoimmune related, or just coincidences? I would think that at least something would show in my blood work. Do these symptoms sound familiar to anyone? Any info would be appreciated. I feel so lost.

Thank you for reading,
Graciegirl

 
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Old 04-15-2004, 09:48 PM   #2
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Takbeer HB User
Re: Autoimmune disorder or back pain?

Hi Graciegirl,
There are lots of autoimmune diseases and disorders. Dermatomyositis causes rashes. I went undiagnosed until my CK enzymes were checked in a blood test. Hope this helps.

 
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Old 04-18-2004, 11:57 PM   #3
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MargieRuth HB User
Re: Autoimmune disorder or back pain?

Hi GracieGirl - I was glad to read your post. I, too, am having terrible back pain, everything I do results in muscle pain, and spasms. I have had an MRI on my lumbar back because of lower back pain, and that indicated arthritis, but this is different. It's a little higher up. My Doc is considering Polymyalgia Rheumatica. I've just finished a round of blood work including "auto immune antibodies" He took X-rays of my spine both lumbar and thoracic and the arthritis is no worse. He had ordered Morphine tabs for the lower back because I also have two herniated discs and spondylolithesis. However, I got sick to my stomach on that. So right now I'm winging it and taking Ibuprofen 2 tabs twice a day, along with Ultram 2 tabs 3 times a day, which I've taken for years for arthritic knees. He didn't want to order any pain medication until he knows what's wrong, because if it is Polymyalgia Rheumatica, that is treated with Prednisone. I'm waiting to hear the results of the tests. Oh, he also did a bone density test to rule out osteoporsis. The pain was so bad, I couldn't get out of a chair, and my daughter put a pillow case around my waist and helped pull me up and out. Hope you find out your diagnosis and I hope I find out mine also. Good luck. Maggie
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Maggie

 
Old 04-20-2004, 01:45 PM   #4
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papillonisback HB User
Re: Autoimmune disorder or back pain?

Hi

I cant believe what I have just read in your post............I would have sworn blind that someone had written your letter on behalf of myself.

I have had a back poroblem for about 9 yrs now (DDD and facet joint problems)
I have recently started having other symptoms psorisis (which I thought was exzema - but it is now too bad for that) Ulcerative Colitis(tummy pain and bleeding basically - this also causes bad mouth ulcers) and other joint pains.
Nothing shows up in blood tests - no inflamation.
DDD shows with MRI.

My back specialist last week said there was nothing more he could for me - that he now thought I had an AUTO IMMUNE PROBLEM.
He is going to refer me to a Pain Clinic and a Rheumatologist.

I dont know what this means for me, It sure scared me to death and I was so upset......the bottom to my world fell out!

I know how you are feeling!

Are you in UK or abroad?

I would really like to get to know you as we are so similar.

 
Old 04-22-2004, 04:02 PM   #5
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MargieRuth HB User
Re: Autoimmune disorder or back pain?

Hi all - the tests that I've had taken indicate Rheumatoid Arthritis and not Polymyalgia Rheumatica - so I have to see a Rheumatologist. Not exactly good news, but at least now I know why I have so much pain. Good luck to all. Maggie
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Old 04-24-2004, 05:36 PM   #6
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papillonisback HB User
Talking Gracie-Girl...........ARE YOU OUT THERE...LIKE TO TALK TO YOU ...!

Quote:
Originally Posted by papillonisback
Hi

I cant believe what I have just read in your post............I would have sworn blind that someone had written your letter on behalf of myself.

I have had a back poroblem for about 9 yrs now (DDD and facet joint problems)
I have recently started having other symptoms psorisis (which I thought was exzema - but it is now too bad for that) Ulcerative Colitis(tummy pain and bleeding basically - this also causes bad mouth ulcers) and other joint pains.
Nothing shows up in blood tests - no inflamation.
DDD shows with MRI.

My back specialist last week said there was nothing more he could for me - that he now thought I had an AUTO IMMUNE PROBLEM.
He is going to refer me to a Pain Clinic and a Rheumatologist.

I dont know what this means for me, It sure scared me to death and I was so upset......the bottom to my world fell out!

I know how you are feeling!

Are you in UK or abroad?

I would really like to get to know you as we are so similar.

 
Old 04-24-2004, 05:39 PM   #7
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Posts: 21
papillonisback HB User
Re: Autoimmune disorder or back pain?

Hi Gracie Girl

I was so amazed when I read your letter....................I would really like to get in touch with you.

As you can see from my post to you (Above) I am also totally confused, un-diagnosed, getting stressed with it all and would love to talk to someone with same problems.

please get in touch

Papillonisback

 
Old 05-19-2004, 08:06 AM   #8
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Join Date: Oct 2003
Location: USA
Posts: 838
californiasunflower HB User
Re: Autoimmune disorder or back pain?

Quote:
Originally Posted by GracieGirl
Hello,

I usually post on the back problems board, but I am not sure if that is my problem anymore. I have 4 drs and they all seem to say different things. My family dr seems to think I have some connective tissue problem, and my rhuemy thinks I have lupus. The others seem to think it is just my back. I obviously do not know what to think. The problem with all this is that nothing shows up in my blood work. The rhuem dr says that I could have lupus, but it is not showing up. I don't know. I know I have a back problem (DDD and facet arthritis), but I also have a few "unusual" things that do not relate to my back. These include:

-Mouth sores (although I was on vioxx, and it could be a reaction from that)
-muscle spasms (in my back)
-wierd rash on my back (not itchy though)
-strange burning sensation in my stomach
-night sweats occasionally
-afternoon chills (so cold fingernails turn blue, not painful though) off and on
-an Mri that showed trace amount of fluid on lungs (since has cleared up)
-TMJ
-history of skin eczema

Could this be autoimmune related, or just coincidences? I would think that at least something would show in my blood work. Do these symptoms sound familiar to anyone? Any info would be appreciated. I feel so lost.

Thank you for reading,
Graciegirl
Hey Graciegirl!

Your post is an excellent question! You seem to have the autoimmune symptoms, particularly, the Raynaud's (blue fingers with cold), mouth sores, night sweats is a key, skin problems, and lung fluid. All keys to something autoimmune going on. It takes time to get the exact culprit diagnosed. It is done partly on 1) the symptoms you tell your doctor, 2) his clinical observation, 3) lab/imaging results.

A lady I met recently informed me of her story about getting dx'd with lupus. It took a few years, and when it finally happened to give the positive labs, it started with a heat rash on her face, neck, chest just after a shower. Then, she broke out with a rash on her arms and hands. She emphasized during this flare that she ached all over including the joints in her toes---every joint ached which caused her to be unable to ambulate barely. She cried having to get up and use the restroom or shower. Her tests for lupus were positive and after the flare, even while she still felt crappy, she was tested again, and she said she couldn't believe they came out normal. She explained to me that test results can differ many times and it takes the clinical and patient's notes of symptoms to diagnose. Connective tissue is a tough one to name. This gal also has DDD and now experiencing problems with an organ but she says her lupus has been in remission. She also has RA.

Also, I wanted to mention that during her worst lupus flare, she also experienced pericarditis and lung fluid.

Hope this story helps.

Last edited by californiasunflower; 05-19-2004 at 08:07 AM.

 
Old 05-20-2004, 04:19 PM   #9
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John Stamos HB User
Re: Autoimmune disorder or back pain?

It is possible you have reiter's syndrome! also called reactive arthritis. it is caused by bacteria from food or genital infection. you may want to ask about getting on antibiotics!

reiters affects the spine, joints, eyes, heart, genitals, skin, ect.....

 
Old 05-21-2004, 01:10 PM   #10
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Join Date: Sep 2003
Location: Phoenix, AZ
Posts: 102
GracieGirl HB User
Re: Autoimmune disorder or back pain?

I am here. Sorry I have not responded sooner. My computer is giving me trouble. I have had very extensive blood work done that included all the possibilities and still nothing shows up. I have been tested 4xs for RA and nothing shows. I don't know what to do. My pm dr is ordering another thoracic MRI to see if anything shows in that. I am at the end of my rope. A couple of my drs still think I could have a connective tissue disorder, but wouldn't that show in my blood work? I realize that it may not test positive for a particular disorder, like Lupus, but wouldn't SOMETHING be off in my blood? Papillonisback, let me know what you find out. I am also curious to see what your drs say. Thanks for all replies, sorry again for the delayed response.
Gracie

 
Old 05-21-2004, 02:34 PM   #11
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californiasunflower HB User
Re: Autoimmune disorder or back pain?

I understand, GracieGirl! I am experiencing the same as you. Symptoms but bloodwork just doesn't show what is happening. I wrote you that story about the lady I met who shared who lupus story. Even after she was dx'd with it, they retested (I don't know why that is done but maybe to see where she is with the flare????), and even when she still felt crappy, the tests were normal. So that goes to show that the bloodwork doesn't always support how the patient is feeling.

I've been sick for a year now and could lose my vision permanently if they don't find out what the heck is going on. The perspective is if they find the cause and aggressively treat it, then with treatment, my vision may resolve. But as it stands, I am feeling worse and getting more symptoms.

So I understand. I want to forget that I ever heard the word autoimmune and at the point where I may just stop looking at anything about it, I'm so fed up with it all and not having any answers nor the treatment to get better, if that's possible! Sorry, I've been in the midst of a flare (fourth day now), and feel really despondent about it all as I see my world crumbling about while rheumatologists live their lives well, not losing jobs or income or anything else for that matter.

Last edited by californiasunflower; 05-21-2004 at 02:49 PM.

 
Old 05-22-2004, 08:58 AM   #12
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GracieGirl HB User
Re: Autoimmune disorder or back pain?

Californiasunflower, I totally can relate. I have 4 different drs telling me 4 different things! What's a girl to believe? And you are right, what do the drs care? One of the drs thinks my problem is all in my back and wants me to have an experimental surgery. So....what if I do and then discover I really have a connective tissue disorder and not only do I not feel better, but have nerve damage from the surgery as well! I don't think so. This is MY body. I only get one. I refuse to be a guinea pig. My rheum. doesn't listen to me at all. He INSISTS I have Lupus, but I am not so sure. He gives me at least 5 different drugs each time I see him. I do not feel comfortable taking all those meds if we are not sure what exactly is wrong. How will I even know what is doing what? To make matters worse, every time I see another dr I tell them what the previous one said and they tell me not to listen to him. Grrrr....I am so confused! The sad thing is that we are not alone in this experience. There are millions of people just as sad and confused as we are. I am sorry you are not getting any answers. Hang in there. Let me know what you find out.
Gracie

 
Old 05-22-2004, 12:54 PM   #13
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californiasunflower HB User
Re: Autoimmune disorder or back pain?

thanks, I will keep in touch with you and will look forward to you doing the same.

One of the things I thought of when reading your post is a woman who finally was diagnosed by a neurologist as having arachnoiditis as her cauda equina was affected.

What happened is that she had had some spine surgery, I believe lumbar, and afterwards she was having problems with the genitourinary area. She tried to tell her back surgeon that it must be consequences of the back surgery. But he had come in, look at all the charts, etc., and he re-explained what he did and assured her it wasn't the back surgery that caused her symptoms. So she went to the obgyn dr as recommended and had a hysterectomy thinking this will resolve the problems. Well, as you might suspect that did not relieve her of the painful symptoms. When the cauda equina is affected sexuality and bowels and urinary functions are adversely affected.

Her story went along where she was told to try something else (my recall is badly affected during this flare) and so on and so on, never getting any relief until she finally met this neurologist who informed her she had had a very tough time indeed and he was going to get to the bottom of it and get her treatment. He discovered via imaging that she had arachnoiditis. A very painful condition. Hers was caused by the surgeries.

I think you're darn right not to have the experimental surgery. It may not relieve you of your symptoms and it may make the situation worse. Especially if you have lupus. I've read where lupus patients suffer badly after surgery.

I'm glad your are going to have the thoracic MRI to rule out other causes. I hope you get a physician that can pinpoint the problem and also work with your medical team.

Hugs, Cal Sun

 
Old 05-23-2004, 02:55 PM   #14
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Unhappy Papillonisback's Nightmare trip to Upsetting Rheumatologist

Hi Gracie girl & CO...

Sorry its been a while - it has taken me nearly 4 days to stop crying and getting upset

Was looking forward to going to see the Rheumatologist, since Back Specialist and Tummy Specialist said I had an Auto-Immune problem that was connecting all symptoms together, and that he was best person to sort it out ...

HOW WRONG I WAS !!!!!!!!!!!!!!

Boyfriend came with me (thank God he did )

As soon as we walked in he had the attitude of "Well what are you doing here"

He said to me, What do you expect me to do?"

As no imflamation showed up in the blood tests (despite joints being hot and painful) he said he could do nothing and I didnt have Athritis (that is going against 2 other specilaists and my old GP)

He was my last chance - my other Dr's had built up my hopes that he would help me - they all said I needed to see a Rheumatologist !

Basically if it didnt show up - it wasn't his department and his problem !
(Despite my Dad having to go throu 2years of pain until his showed up in his blood - this Guy is new to the hosp and has just started treating my Dad too)

He was totally unhelpful... and reduced me to tears.

My Boyfriend said later, that he had never seen me cry so much!

It felt like my whole world had ended.......

He said I was the "most Depressed person he had seen" - YES !!! I am, as no one will help me.......But he sure made me 50% more Depressed and made me fall to peices.

He wanted me to go see a Psychiatrist !!!! to help to cope with pain !

What bloody good is talking things through - I can do that till I'm blue in face, but if they dont help pain - then it aint gonna make me feel any better.

I miss going to work, meeting people, having friends, driving my car, having the independance to go out when and where I want alone.


He agreed I had pain, but told me he couldnt do anything for me....and kept saying over and over again "What do expect me to do?"

So, after a while, I said through tears to Ian (my Boyfrien) , come on lets go ,He's not going to help me and we left.

I couldn't stop crying all the way out of the room, and hospital
The nurse in charge of the clinic, came running after us and asked if I wanted to go sit in a room and have a glass of water.....to which I replied...No, I just want to get out of here and go home.

I must have cried all the way home.

I didnt know what to do, what to think or how to feel.

Had Ian not been with me, I think I would have walked as far as under the bus.

I was devastated..


It has taken me a couple of days to get over it and now I just feel numb really.

Not sure what there is to do next - suppose I will go back to my GP and see what she says.

I just want someone who will help me........I want a life back !

I KNOW JUST HOW YOUR FEELING.......EXACTLY !!

I am from West Yorkshire (Bradford) UK - where are you from Graciegirl ?

Does anyone have any advice please on what I should do next the Psoriasis is still attacking me, joint pains in knees, shoulders, elbows and worn disc's (worse pain) in lower spine.
Ulcerative Colitis is being good, for once.
Muscles feel so heavy, sore and tired

 
Old 05-24-2004, 11:09 AM   #15
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GracieGirl HB User
Re: Autoimmune disorder or back pain?

I am so sorry Papillon, that you had that experience. I assure you, you are not alone. I have been to 9 different drs so far and only a few who have really tried to help. I went to one that actually told me just to stand up straighter! (I wanted to punch her in the face!) You need to keep looking until you find one that will help you. If you don't like them, don't go back. I know this is exhausting. I feel like sometimes if I have to tell my story to another dr I will throw up! I am sick of saying the same thing over and over. I have walked out on drs that don't listen to me. I know it is hard too when you get your hopes up that someone will finally be able to help you, and when you go they totally disappoint you. Trust me, I have been there. It was a smart thing you did by taking someone else with you. Especially a man. I hate to say it, but when I go alone I get no where, when I take my husband they listen. Interesting....Perhaps you need to see another rheum dr. I don't know. Perhaps if you can tell your pc dr what happened he/she will suggest another one. Have you been to a pain clinic? They are the only ones trying to help me at this point. Take a break and try to relax and then start looking again. I can totally relate to wanting a life back. I miss working sooooo much. I feel so helpless and lonely. I was a very active person before this and this has brought my life to a screeching halt. I feel for you, I do. Keep the faith, you can do this.
Keep me posted,
Gracie
*I am in the US.

 
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