Lupus & Fibromyalgia

How many of you have both Lupus and Fibromyalgia?

Return to Poll

71%

 (5) 

yes, I have both

0%

 (0) 

No I just have lupus

28%

 (2) 

No, I just have fibromyagia

7 Members voted

[TrudieC]

How about don't know!  I think they are so intent on finalizing my Lupus diagnosis that they aren't even thinking about the possibility of fibro.  How do you tell the difference?

[karajo]

Hi Trudie,

Lupus and Fibromyalgia are similar in many areas.  They both have muscle aches, but lupus also has occasional muscle weakness.  In lupus you joints not only hurt, they will also swell.  You don't have the rashes with fibro.  Fatigue goes with both.  Not sure if the tingling prickly feeling in hands and feet are a symptom of both.  Irritable bowel symptoms can go along with both as well as nausea.  You can also have raunauds in both.  The one big difference is the lab.  Elevated ANA, WBC and Sed Rate are not elevated in fibro. (ANA can be a low positive in fibro.)  Lupus patients can run a low grade fever.  Their hair sometimes falls out.  The sun makes them fel bad.  

What kinds of symptoms are you experiencing?

[Joni686]

Hello stranger.  I hope all is well with you.  I think about you and pray for you always.

I just wanted to add that my feeling is that when my fibro is acting up my muscles hurt and my whole body just aches.  The lupus makes my joints hurt, not muscles.  That's how I think I can tell the difference and know that I have both.  The severity of them just comes and goes.

I hope that helped some, but that is my body.

Joni

[karajo]

Hi Joni, my precious friend!

I'm thinking that lupus can also affect the muscles.  But the main muscles I've found that are affect in a fibro flare are the thigh and across the shoulders.  I also have chest pains.  I know it is different wih each individual person.  From what I've read, fibro can make you think your joints are hurting.  But lupus will eventually cause some of your joints to have some swelling and redness.  

Honestly, I think in the early stages, it might even be difficult to tell the difference.  But as things have progressed I can tell the differenct more and more.

Blessings, Kara

[MSFEE]

how about i have one daughter with lupus age16 and one with Fibromyalgia age 15!! how does this happen? they are babies, my babies. can you help me understand how this happens when this isnt in my family nor thier fathers side of the family? Im confused!!

[TrudieC]

With Lupus you can have muscle pain and all over aching.  My pain is primarily in my muscles and feels like my bones.  My body lays down extra fascial tissue which creates more pain.  I think for fibromyalgia there are certain pain points that must be tender in order to be diagnosed.  Otherwise I would think they feel very similar.

[RockinRuth]

Ok, Yesterday, I was diagnosed with Fibromyalgra.  I don't think I have it.  I think I have Lupus or MS.  ENT did a ANA test which came back positive.  Then the ENT did a lip biopsy and it came back positive.  Yesterday, I saw a Rheumy for the first time and she said I have Sjogren's and Fibromyalgra.  My symtems are: hair loss, numbness and tingling in face, chest, arms, legs, feet.  My face is always itching lately, low grade fever usually in the early mornings and sometimes late afternoons.  Shoulder, neck pain on right side.  Hard to lift right arm.  Alot of times I have no strength to pick my children up if I try I drop them.  When symptoms are bad it feels like pinky and next two fingers are going cripled.  Upper thigs sometimes get numb.  Sometimes I get sores on my tongue or in my mouth.  The other day my tongue was so sore and red it was raw.  Blurred vision.  From 1995 to 2001 I used to break out in a rash everytime I was near the sun and it would last 2 to 3 wks.  Joint pains and achy pains in arms and legs and hips.  I get pain in my middle back that squeezes all the way around to my chest, it can last a hour or 3.  Shortness of breath and it feels like i have anomonia. Thick muscus that drains in my throat.  Lymnodes on right parotoid sweeling all the time and very painful.  I have horrible fatigued in the mornings and sometimes afernoons.  I have headaches that come and go all day lasting anywhere from a second to longer.  Sometime migranes (migraines) to where I throw up.  I  have more symptoms.  I do believe I have Sjogren's but why dosen't the Rheumy test me for LUPUS?

[karajo]

Hi Ruth,

There is not a "test" for lupus.  It is a combination of many things.  They connect the dots (so to speak).  

What was your ANA level and the pattern.

The pain across the back of your shoulders is very typical of fibromyalgia.  It is not uncommon for lupus patients to also have fibromyalgia.  The one thing that seems to help with fibro is sleep.  I take a benadryll and a melatonin to help me sleep.  

I'm not saying that you only have lupus.  I was also told that all I had was fibro and deep don I knew I had more than fibro.  I know people w/ fibro and they have never been as sick as I was.  

So was the lip biopsy confirming a lupus dx or a sjorgren's dx?  What symptoms do you have with the sjorgren's?  

You do have a lot of lupus symptoms. Sometimes y fingers get this froze up feeling...like a cramp.  Have they checked your vit D level.  Many (if not all) lupus patients have a low vit D level.  This can cause bone pain as well as that cramping up thing.  We have my D level in range, but I still get some bone pain...although it is nothing like it used to be.

I know how very frustrating it is when you are having problems getting a dx.  I actually went to a lupus forum @ a health club.  When I told the dr speaking @ the forum what my ANA level was, she said I had mild lupus.  She had no idea that no one had diagnosed me.  I switched to her.  So I believe God ordered my steps that day.  The other dr. were just playing games with my health.  

Hope this helps,
God bless, Kara

[RockinRuth]

Kara,

ANA was positive:   Anti-Nuclear Ab-Titer:  Pattern: Nucleolar  Titer: >1:640 Anti-SS-A 0.4, Anti-SS-B >8.0 H AI, SED Rate (ESR) 13.

The lip biopsy was taken for Sjogrens because my ANA came back positive.   Lip Biopsy also came back positive.  (Right partoid was swollen with a lot of pain, dry mouth sore throat, hard to open mouth.)

ENT did the ANA and lip biopsy.  He said Sjorgrens is either primary or secondary?????  When I look back at all my symptoms and what is happening now, I think I have LUPUS.  

Rheumy said I look great and don't have Lupus.  (Quack, quack, quack)

This monday I am going to see my GP and let him know everything that is going on and see if he will check my Vitamin D and have my lungs checked and to see a dermatologist.      Should I ask him to do anything else????  

[karajo]

Hi Ruth,
I'm not real familiar w/ Sjorgren's.  From what I read, it says it is characterized by dry eyes, mouth and arthritis.  But I also read that Lupus patients could also have Sjorgren's.  But your ANA pattern is not often seen in Lupus and suggest scleroderma.  Only 5-10% of people w/ Sjorgren's also have Lupus and 10% of Lupus patients have Sjorgren's.  

As far as you labs go, I'm not familiar w/ anti-nuclear or Ab titer. Your other labs looked normal (according to the levels on my lab test - I know normals could be different per lab.)  

I would definitely suggest you request a vit D level.  I have also read were Plaquinel and Pilocarpine (Salagen) helps increase tearing and promotes increased salivary secretions.  

There is another condition called Mikulicz's syndrome where the paratid or salivary glands become greatly enlarged from acute inflammation.  It makes the patiet appear to have the mumps and the salivary glands are extremely tender.  Corticosteroids have worked well with this condition.  

Keep us posted on how things work out.  Have you become familiar w/ the 11 criteria for a lupus dx?  

[RockinRuth]

Yesterday I found out that my father has had plerisy twice growing up.  My mother said she doesn't remember what doctor she went to but back in 2004 she was told her skin condition and other medical problems were Lupus.  My Aunt on my mother's side called and said she has alot of the same symptoms as me but never had been to the doctor and that one of my other aunts has the same problem.

[dustybrown]

I am confused about my Fibromalgia diagnosis. My ANA was positive, but my levels don't match up numbers wise on the scales you guys are talking about My lab results denote positive results on markers that fall less than 10. My level was a 4. My sed rate was a 0, but my WBC was slightly elevated not past the top reference range of 10, (mine was a 7.5), but I read that anti-seizure medications can falsely push those levels down. (I am taking Topamax), so technically my WBC would probably be higher if I wasn't taking anti-seizure medication. Also, though low, I do have a Rheumatoid Factor. Is it possible that I have something more than just Fibro? I feel as though I am getting sicker and sicker as time goes on.

[karajo]

Sorry to hear that you are not feeling well.  

How many times did they check your ANA?

My level has been all over the place.  160, 360, 640, neg., 2,560.  The last reading was after I spent 30 min. out in the sun on a hot July day just before my dr. appointment.  I thought the doctors were going to take the neg reading over all the other positive readings and dismiss me.  But the 2,000 reading got their attention.

I also have fibromyalgia.  I know symptoms with that can wax and wane just like the lupus symptoms do.  Your ANA level was certainly not considered positive.  The most important thing w/ fibro is to get good sleep.  I take a benadryll and a low dose melatonin.  This helps me sleep really sound.

God bless, Kara

[RockinRuth]

I requested my files from 1996.  In 1996 I went to a Dermatologist for a skin rash.  I only saw ther Dermatologist three times.  She said I had Lupus.  I never did believe her.  I open up my files and their was an ANA test.  It reads, 6/27/1996 - ANA Positive - Homogeneous 1-320 and Speckled 1-320 - Centromere Antibody Negative.  What do you think about this ANA test.

[karajo]

Hi Ruth,

The homogeneous is an indication of Lupus.  This was the pattern of my ANA.  Although I had a hard time getting a dx.  Got the same run around as you are getting.  Even when my ANA rose to 2,560!!!  I found a dr. who said I have mild lupus.  Mild, meaning not organ involvement.  

The speckled pattern is seen in SLE as well as other autoimmune diseases and in some healthy individuals in low titres.  

From what I've read, a dermatologist is able to do a biopsy of the skin involvement in lupus and dx lupus that way.  Did your dermatologist do that back in 1996?

I know how frustrating it is to be as sick as you are and get the run around from your doctors.  Keep positive and try not to get discouraged.  If you feel brushed off by a dr., try another one.  Drs. don't rush into dxing people w/ major autoimmune diseases.  There are certain criteria for dxing lupus.  Become familiar w/ them.  A lupus dx is more than an elevated ANA.  Other things can cause an elevated ANA.  So for the most part, it is a piece of a puzzle.  Most rhematologist want there to be organ involovement before they hand down a dx and even give the patient medicine.  I found a dr. who would at least try plaquinel.  It has given me my life back.  

Praying for you, Kara

[RockinRuth]

Thank you for all the information.  My Thyroid blood test came back today and it was normal.  However, my Vitamin B6 and B12 were on the borderline and they want to re-test.  Vitamin D deficiency and I forget how much per day they are starting me out on still have to go to the pharmacy and pick it up.  But, Thank you, thank you so much.

[karajo]

You are welcome.  I have a friend who was low in B-12.  She had/has a lot of neurological problems and fatigue because of the deficiency.  She went years w/o treatment and it caused permament nerve damage.  

[scorpio303]

I have both sle and fibromalgia.

[karajo]

Hi there and welcome to MedHelp.  Thanks for replying to the poll.

How long have you had SLE?  I know I had symptoms for quite some time before being dx.  Do you have organ involvement?

[matilda587]

hi everyone.I have low b12..I dont know how long its been low..have been complaining of being tired for awhile now.Im in Canada-so you cant just go where you want,or get tests that you ask for.See Ive had hypothyroidism for 20 years..so when I said I was tired they would just check that.normal of course.Then I thought I had a stroke at work.All the symptoms.They diagnosed me with fibro,,went to a quack rumy...wouldnt listen to me.Said I was depressed.Duh!?ya! It was 9 months before I asked them to check my b12..as I was deteriorating.It was so low I need shots every 2 weeks now!And that low b12 left,causes central nervous system disorders.So,I in sisted they do an mri-white lesions showed up on the one side.He said he didnt think I have ms cause its on the other side of the brain.My sister has lupus-and for years her results came back negative.She was diagnosedx with everything but..fibro etc..The sad fact is..lots of times I think its too late..by the time they figure it all out,,all you have is alot of meds.

[scorpio303]

I have had sle since 1988. I am now 49. In 1989 I had kidney involvement. I have had chemo treatments for this. The kidneys stable now. I have to take cellcept to try to keep the kidneys in line. I am also on low dose predisone and plaquenil. Thank you.

[karajo]

Did you have any symptoms of kidney involvement?

How are you doing now...as far as fatigue and joint pain, etc.?

[karajo]

I have a friend who has had trouble with low B-12.  She had a hard time getting treatment too even though they knew it was low.  She had to switch doctors to actually get treatment.  She now has permanent nerve damage.

Have you researched the lesions in the brain?  Does Chronic Fatigue also cause lesions?  Perhaps Lymes?  Just thinking what else causes brain lesions.  

It's a scary thought how your health care is in Canada.  Our President wants the same health care you guys have.  Lots of people here are not sure they want that.  Even the doctors I've talked to don't want it.  

It's times like these that we need to trust the Lord.

God bless, Kara

[matilda587]

Youre absolutly right...if it wasnt for the Lord..I probably would end it all.Ive called out to Him,manyyyyyyyyyyyy times!

[scorpio303]

My symptons of kidney involvement was really bad swollen ankles and feet. I could not even ware shoes. Also had a lot of protein in urine. Had to do 24 hour urine test. I have a lot of fatigue. I work 15 hours and that is still hard. The last week I have had ankle and foot pain. I applied for disability. Been on ssi twice before.

[RockinRuth]

Went back to the same Dermatolgy practice I went to in 1996 and they looked at my old files and said that my ANA was positive for Lupus and my skin biopsy came back positive fo SLE.  The nurse replied so how have you been feeling for the past 13 years living with SLE.  I was totally shocked.  I didn't know that these test were positive back then.  Now I know I do have SLE and Fibro and Sjogrens and CFS and Parathesis and    I'm anemic and have a vitamin D defincecny and a hernia in C4-C7 and the Dermatologist said I do not have Scleraderma.  I go back next week to see the Dermatologist and he is referring me to a differant Rheumy.  Dermatologist said he wanted to do a work up on me.

[karajo]

Oh Ruth, doesn't that make you mad!!!! :(

I'm so sorry that you have had to suffer for 13 years.  Hopefully you can get some help now.  

Thanks for the update.  

[TrudieC]

A week ago I visited my rheumatologist and complained of the pins & needles/burning/numbness/itching/scalp pain/headaches and the increased pain in my muscles.  He just flippantly remarked that it was due to my fibromyalgia and he just considers that a nuisance.

So now I know that a lot of my issues are due to the fibromyalgia and am working to try and determine when it is fibro or Lupus.  He didn't seem to care about treating it, just said that the depression meds I am on will help me sleep and thus help the fibro.  Well I have kept telling him I can manage as I thought my issues were due to Lupus and I didn't want to go on prednisone.  Now that I know they are mostly fibro I am hoping to get into my GP this week and get him treating the fibro so I can get some relief.  

[karajo]

I hope they can do something about the fibro.  The only thing I'm aware of that might help w/ fibro is Lyrica.  And I don't know too many people who can tollerate this drug at the level they found gives fibro patients releif.  I found that good sleep and trying to de-stress helps mostly w/ lupus.  Also doing particular exercises help as well.  I think some people have really severe fibro or perhaps something else that just hasn't been diagnosed yet.  Thanks for being in our group.  You are a blessing to me and I feel others too.  

[PiperW]

For the poll: I have both.

For Ruth: I have SLE, Sjogrens, C.R.E.S.T., CTD, Fibromyalgia, Raynauds, Vitiligo, IBS (in the past) and have had Low B6 and low thyroid.

I pretty much feel the way you did in your earlier posts. I hope since some time has gone by, that you are feeling better now. Low B6 was a freaky thing! That was the one that made me ITCH, have tinging, numbness, pins & needles, etc. Lots of nerve type stuff. Taking a supplement cleared that right up. Sjogrens will give you that mucus in your throat deal. Do you choke a lot? That was about the only thing you didn't mention that I deal with. I haven't found much help for the Sjogrens. My eyes are the worst. They are so dry and uncomfortable! I chew gum often to help me make saliva but it aggrivates my TMJ (or Lupus in my jaw maybe), so I can't chew it ALL the time.

I can't tell my Lupus from my Fibro. I just hurt all over.

[RockinRuth]

Thanks for the information.  I am still in the process of having more testing.  I go next week for an EMG.  Just had a PFT, ECHO and alot of blood test.
Rheumy confirmed I do have Sjogrens, Fibro, mild lupus, Raynauds.
Neurologist confirmed hernated disk from C4 to C7.
I do choke alot and I try not to eat to fast because then I choke it hurts.
My eyes burn alot and my eye doctor plugged my eye ducts and I use Smoothe XP morning and night.  They do itch constantly regardless of the drops.
I should have my Vitamin B checked.
Blood test are:  Comp Metabloic Panal, Aldolase, serum or plasma, Creatine Kinase, c-reactive protein, and SCL-70.  Retesting the ANA and the SSA & SSB.  I go back Feb 22 to see the Rhumy.