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Not fibromyalgia but a mild form of Lupus??
16 Replies
chucksusanandgrace - December 15

I just posted a while back ago, but today I went to a new Rhuematologist and she told me she thinks I have a mild form of Lupus.



These are my symtpoms that occur sporadically over 10 plus years.

1. numbness and weakness feeling in my feet, legs, arms and hands. Sometimes my face
2. burning sensation that travels back of neck, chest both front and back, breasts, arms, legs, hands, feet. The sensation is almost like it is very cold as if Vicks Vapor Rub was rubbed on my skin.
3. fibro fog
4. joint pain - but not always
5. dizziness
6. anxiety
7. severe problems sleeping. I wake up very easily from any little noise.
8. muscular skeletal pain (that is what the Dr calls it) costochondritis and pleurisy.
9. Positive ANA and ACA
10. uveitis
11. two miscarriages after one live birth

Does this sound like fibromyalgia to you? I am getting a second opinion with a new Rhuematologist & Nuerologist in January. Thank you kindly for your replies. I feel soooo desperate.

 

Canada17 - December 16

FM and Lupus symptoms are a lot alike. However, there is a test for Lupus and not for FM. FM is usually diagnosed after ruling out other illnesses and then confirmed with the tender points test.

Your doctor should test you for Lupus along with rheumatoid arthritis, thyroid imbalances, hormone imbalances, vitamin deficiencies, white blood cell count, etc. before giving a diagnosis of Fibromyalgia.

Lupus is on my dad's side of the family so I thought I had it given my symptoms but it was quickly ruled out with a blood test.

I could be wrong but I believe positive ANA and ACA indicates Lupus or rheumatoid arthritis. Can anyone confirm that?

Did you doctor arrive at a diagnosis of Lupus after blood work? A second opinion won't hurt anything.

 

chucksusanandgrace - December 16

Thanks so much for your reply, I appreciate it. I have gone to a few rhuematologists throughout this time and about 3 weeks ago did a follow up. She shrugged his shoulders, said he doesn't know what is causing my symptoms, but that it definitely isn't Lupus, but he doesn't know.

I followed up with another Rhuematologist and she thought it really indicates Lupus, but she is running a bunch of more tests. She did xrays of my feet & hands too. I am really praying it isn't Lupus.

I probably will get another Rhuematologist opinion after her diagnoses.

The Dr arrived at her very possible diagnoses from ACA, ANA and my symptoms costocondritis/pleury, uveitis, 2 miscarriages and plantar fascitis. But I am not totally convinced with her findings either.

Thanks, I would like to know someones thought Canada17 questions on
"I could be wrong but I believe positive ANA and ACA indicates Lupus or rheumatoid arthritis. Can anyone confirm that?"

 

tnichel - December 16

OMG!!!!!!!! Chuck!!!! yes!!!! I haven't even read you whole post I'm so happy you're up here. Me too! I wrote a post about a month ago and got very little response I am in the middle of a lupus flare, have been for the past 2 months and I'm miserable and don't really know what to do since I spent so much time educating myself on fms. I haven't had much luck with find really good website on lupus. I'm going to find my old post and write something so it will be at the top for you to read. Please, please, please talk with me! I'm at my wits end. I have an apt with my internal med doc tomorrow. I see my rheumy frid. I've been on prednisone for two months. since sunday i haven't really been able to walk b/c my knees and ankles hurt so back. They're locking up and it feels like when you have a charlie horse. the breathing pains are back...headaches that won't go away. Nothing is working. None of my meds and I see a pain doc and those meds aren't working either. I"m so frustrated and I feel like my docs don't take me seriously. He only put me on the prednisone b/c I thru a temper tantrum and refused to leave w/o him doing something. I'm pretty strong but I don't know how much more I can take. I still have to work and I can barely move. I'm so glad you're here. Maybe we can get answers together. God bless you!!!!

 

tnichel - December 16

My symptoms:

Now:
1.constant headache (signals impending flare)
2.dizziness/weakness/l
ightheaded
3.nausaeu/sometime
s
vomitting
4.low-grade fever, usually 99 (signals flare)
5.achy joints, elbows,ankles knees (like they're being drilled into
6.bone deep pain (nothing like fibro pain 10x worse)
7.breathing pains in chest (especially when it's cold outside)
8.extremely sore under armpits
9.intense jaw pain
10.my skin goes dark, blotch and looks kind of scaly on my arms
11. no malar rash on face but it's on my chest and shoulders
12.neck pain and a lot of knots in neck muscles
13.racing heart
14.sore throat (signal of impending flare)
15.I'm walking like an 90-year-old. I can barely get up stares.

over past 10-15yrs (docs always said I had a lot of pain from flat feet but now I'm questioning whether alot of that was childhood lupus):

1.extreme foot and leg pain growing up
2.once ended up on crutches from stress fractures which recently a rheumy told me should have never happened.
3. no tolerance for heat/sun
4.no appetite
5.extreme weight loss (freaked out my parents...ended up getting every test under the sun including a bone marrow test for cancer)
6.consistently low wbc
7.paralyzing spells when breathing that would last up to half an hour...never knew what they were and never told my parents
8. a lot of headaches
9. was always sensitive (couldn't rough house with my other sibs b/c I was always getting hurt first) couldn't run alot b/c of weak ankles
10. always slept a lot in college to the point my roomies commented on it, especially if we spent a day out in the sun.
11. i always joked about waking up and sitting on the toilet in the morning and knowing right then what kind of day it was going to be b/c I had 2 distinctive moods... good and bad. my friends thought I was crazy. it makes sense now.
12. a lot of uti's and yeast infections and I'm a clean girl
13. easily contracted bacteria and infections
14. was anemic most of h.s.
15. had 2 surgeries by age 23 (cyst removed & gall bladder)
16. could never recover from a late night out like others.

recent tests:

1.ANA panel positive past 8 months
2. ssa sky high was 539 now down to about 9.0...it's supposed to be .8
3.currently anemic (before prednision, it can make you anemic)
4.low hemoglobin

***The thing is I look healthy. No one would ever suspect. I wouldn't have considered myself a sickly child either. But the pieces of the puzzle are starting to come together nicely.

 

tnichel - December 27

previous post

 

chucksusanandgrace - December 28

tnichel

Hi there,
Your symptoms do not sound like mine. Your symptoms do sound very specific for lupus. Did you find a Rhuematologist in your area? I pray you will find some answers.

I posted you in a link with some website links for lupus. Very informative forums and people are quite knowledgeable.

lupus dot org is a great forum, small but helpful. Lupus Foundation of America has so many great things on their sight.

May God Bless you,

Susan

 

somewhat_damaged - December 28

Well as for the positive ANA, I know Lupus can ONE of the reasons for that. Not sure about the other test, I am not familiar.

There are other tests, like an SPEP (Serum Protein Electrophoresis or something, that they can test, and also some blood tests called "compliments" like a C1, they can do to check for Lupus. I would make sure she runs the whole kit and kaboodle, before diagnosing. I also know that you can still have FMS and have a positive ANA, as often Fibro can can accompany other illnesses.

I have had a speckled ANA several times and they still don't know what it is, but they did diagnose me with FMS as well. They had me convinced I had Lupus, just to tell me later, that the blood tests were negative.

Hope you get some answers, just stay on your docs and don't give up!!

 

tnichel - December 30

Hi Susan,

the coldness you feel in your limbs (if you have some form of lupus) is likely the chills described during a flare. sometimes it's accompanied by chattering teeth.

I really do hope you and somewhat changed don't have it b/c it's so painful. The first rheumy I ever saw ruled out lupus & diagnosed me with fms. but he didn't run any tests. My current rheumy ruled it out 2 years ago but diagnosed me again in early fall based out several positive lupus panels and put me on prednisone which worked wonders. Lupus likes to move around and can further throw off docs. It can also develop very slowly, which is my situation and why it was likely overlooked in my younger years.

I found a really great link to an article on dealing with lupus which is for nurses and docs. To date it's the best comprehensive web page I've found. If interested I can send you the link.

Thanks for the site suggestions. I've been to them all and I still don't feel they are specific enough. I can't remember the passwords to the forums either-(dang you fibro)! I'm a journalist so research comes easy to me I just wish I could find a user-friendly forum like this one. If you're interested in the link let me know. Also feel free to forward any links to me. t_nichel. It's a yahoo account.

 

Awesome1 - December 31

Wow!! So much pain yet hardly any long term relief.

Fibromyalgia will always be connected with Lupus and Arthritis. That is a guarantee. As long as the mindset of everyone is more toward rigidity, there will be a lot of complaints and more complaints about their pain and drugs.

Don’t you all want to readjust that? Why do we need to re-explain what it does, the difficulty in determining the cause, and ignoring the fact that doctors will not have a solid answer.

Isn't there a genuine solution? Have you all forgotten about Kv1.3+ (ion channels in T-cells)?

 

Canada17 - December 31

Awesome1, so what do you propose we do? Isn't the point of doing research to find out causes so that treatments can be developed?

We could all sit here and just accept that we have these diseases and not seek the answer to: Why? But what would that really accomplish? We would be left to fend for ourselves against a disease that hides itself. Doctors cannot help us if we don't ask for it. If enough of us stand up and demand an explanation more doctors and researchers will focus their energy on finding us an answer. If we just accept that it is what it is and this is what we have to live with we will never get any closer to a true treatment for it let alone a cure!

It is not a guarantee that FMS will always be connected with Lupus and arthritis. However, it is common that people with Lupus and arthritis will develop FMS because FMS often develops after traumas to the body. Having FMS does not mean you are guaranteed to develop Lupus or arthritis though.

Maybe I didn't take biology long enough or maybe I didn't pay close enough attention. Since you asked "Have you all forgotten about Kv1.3+ (ion channels in T-cells)?" Can you explain the connection because I must have forgotten. : ) Thanks.

 

tnichel - December 31

WELL SAID AXXIE!

Awesome1 please don't insult us. I've done plenty of research on my own and so have many others here. We come here to compare, support and help one another deal with fms. We already know many who have fibro also have some type of autoimmune condition. BUT...it's insulting to have you come here to rant about a cure that doesn't exist. How else are we to help solve the mysteries of this disease w/o searching for answers and pushing the medical community to do more research on fms.

My top concern is how you spew this junk that could give an unsuspecting, newly diagnosed patient false hope...which in the 5-stages of mourning, could cause them undue stress and turmoil. Please think before you start posting and do not make light our sold called "complaints and more complaints.) It's insulting to the intelligent folks here who know what they're talking about either thru research or experience. I'm not trying to be rude. I just want you to see it from our perspective.

 

Rosscow - January 1

Hi
I have been suffering with Fibro for 12 years now.
Diagnosed 1 month ago. Fibro is a reaction to a auto immune disease. Fibro is the secondary diagnoses. The real one exists. To accept that you just have Fibro is not a valid answer from any Doctor. It's a lump it all diagnoses. Any one of these diseases...your still going to require simiar treatments. I'm Positive ANA speckled. All other major tests all negative. These symptoms were triggered by a infection or a physical trauma and yes mental also...depression etc. I told my Doc that the pain causes the depression so lets look at the pain and nerves not that as a whole cause.n You've never seen such a strong person go down so fast. Gimme the Lupus diagnoses.. then I know what it is and will figger it out. Tell me I have MS and I will deal with it. Fibro is as bad as or worse than Cancer,Lupus,Aids,Ms. It leaves a person in complete limbo as to how to deal with it, people look at you as if you got the Plague but you are not infectious you just look like it. Just tell me I'm screwed got MS or whatever and call it a day. You can't fight Fibro because you really don't know what the Primary is. Fibro is secondary disease. As long as you don't have a bleeding tumor right between your eye's, blood running down your face will they deal with your real problem. Behind Fibro is a very nastey disease. For them to say you JUST HAVE FIBRO. I'ts ridiculous.
MS,Lupus,Arthritis,Lyme,deep infection (parasites) etc. Been through the routine all of you have. Tests for infections,STD's,Bone marrow,cystoscopies,colonoscopies(pardon spelling)
Mri's showing severe osteoarthritis, etc. But no real diagnoses exect Fibro. They found Polyps,arthritis,bulgin discs,ANA pos speckled.
We all get old but so do the other people we are around. Whats with the deep tissue disease... the pain. Toxins I figger but the moment you say a word about that your prescribed anxiety drugs.
Try to be well but search for the real answer. Believe it or not you could just have one allergy thats causing you this pain.
Be well as you can.
Rossco

 

terilyn - January 1

Sounds like Fibro to me !

 

tnichel - January 2

Hi Rosscow, thanks for your response. That's the message I'm trying to convey to others. Don't accept just the fms diagnosis. I did that for a long time only to figure our recently some of my more serious symptoms was actually lupus. It took 2 rounds of prednisone but I'm finally over the flare and can deal with the fms much better.

I also have sjogren's syndrome, and let me tell you I think it may be even worse than fms. There is definitely very little research on that and hardly any meds to treat it. I'm a fighter but these 3 conditions drain me emotionally, physically and mentally. I'm now ready to admit I'm in a bit of a depression right now and will need to seek a therapist or a local support group. Thanks again for your response. You don't know how much that means to me right now. Also, did they ever figure out what autimmune disease you are battling?

 

chucksusanandgrace - January 3

Terilyn -

Were you talking to me when you said it sounds like Fibromyalgia???? Or were you talking to Rosscow?

Thanks for answering

 

Rosscow - January 3

Hello Again.
In response Tnichel`s question. Have they figgered out what im dealing with... No they have not. I have a low ESR (inflammation test)positive ANA test, all other tests normal(and I mean all, several times over). My legs burn like fire,right hip pain,major fatigue,slight anemia. Feel aware of every nerve in my lower extremeties. I have what I call shocks through the body when lying down. They bolt and my leg,or head,arm etc will move on its own.Nerve waves across the face sometimes. Painful pelvic muscle pain especially when sitting. Testicular and prostate ultrasounds normal. No serious pain on digital prostate exam. Nerves and muscles.
When I crouch down and stand back up you can hear a crackling sound not just in my knee`s(no pain in knee`s) but in the thigh muscles themselves.
Body temperature in the summer is a real problem. Talk about sweat especially when working (I wear hardhat,fireproof coveralls etc). Just pours down me but guy I`m working next to has no problem.

A person could go on and on but thats the just of it. It has gone into remission twice now a year or so at a time but cant pinpoint why.
Tnichel your welcome to converse further with me. rosscow on hotmail account. I do have some tricks that have helped me endure this so long. Done much research in the past years. Ball team called me Doctor Ross for a while lol.
I have to figger this out, its been to long.
Everybody be as well as you can, laugh, hot baths,etc.
Rossco

 

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