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View Full Version : DX w/ Lupus, Questions about Fibromyalgia



Mellie
08-17-2009, 03:16 PM
Hi Everyone,
I hope you all are doing good. I have have had Lupus for the last five years, ra for 12 years....lately the Lupus has been flared but nothing seems to help and symptoms are a little different. My rheumatologists has added two more meds llevra(sp?)and flumonide (?) but with those in addition to my current meds i still have an unbelievable amount of pain and stiffness throughout my whole body, for example l am to move my arms, jaw is stiff, feet swollen, back pain. I have never resorted to pain meds but now have to take them in order to function. Some of the symptoms are similar to fibromyalgia, I am wondering if it is a secondary disease. My Rheumy doesn't seem to think so, but doctors tend to look over things.

Any advice or suggestions

melissa

mountaindreamer
08-17-2009, 05:21 PM
there is not a blood test for fibromyalgia, so it is not acknowledged as an auto immune disease. However, there are a lot of members here who suffer with both...i am one of those. fms is extremely painful, and the back is where some of the pressure points are. I suggest you look up fibromyalgia in webmd, or another search. They will show the exact pressure points, and if you press on these points and feel pain, then i would question my dr. further about it.

good luck, i am glad you joined our little family.

Saysusie
08-17-2009, 09:52 PM
I was going to suggest the exact same thing. Many of us, with Lupus, also suffer from Fibromyalgia and the pain that you describe (stiff jaw, pain in the back [our pressure points], widespread muscle pain) all sound like they could be due to Fibromyalgia. It is quite common, unfortunately, for those of us with Lupus to also develop Fibromyalgia.
The primary difference between Lupus and FM is that Lupus is a disease that can have life-threatening symptoms: FM is a condition that causes widespread pain, fatigue, IBS, TMJ, Sleep disturbances, and other symptoms....but is not life-threatening!
Learn as much as you can about the two conditions and the fact that their co-existence is common. Also, there are lots of posts here dealing with the subject. You can type "Fibromyalgia" in our search and it will bring up all of the posts with that word in them. You will learn a lot reading those posts. As always, if you need any more information, we are here to help you as much as we can!

Peace and Blessings
Namaste
Saysusie

debbie-b
08-19-2009, 05:48 AM
Hi Everyone,
I hope you all are doing good. I have have had Lupus for the last five years, ra for 12 years....lately the Lupus has been flared but nothing seems to help and symptoms are a little different. My rheumatologists has added two more meds llevra(sp?)and flumonide (?) but with those in addition to my current meds i still have an unbelievable amount of pain and stiffness throughout my whole body, for example l am to move my arms, jaw is stiff, feet swollen, back pain. I have never resorted to pain meds but now have to take them in order to function. Some of the symptoms are similar to fibromyalgia, I am wondering if it is a secondary disease. My Rheumy doesn't seem to think so, but doctors tend to look over things.

Any advice or suggestions

melissa

Hi Mellie,

I was dx with all three at the same time, Lupus SLE, RA and Fibro. It is nearly impossible to tell, which pain comes from what disease. I have muscle pain and tissue pain, is it from the lupus or fibro? I have joint pain and stiffness, is it from RA or lupus? I have brain fog ( alot), is it from fibro or lupus? I have only tried NSAIDs, Nabumetone 750 MG, it helps somewhat. I am afraid to take Lyrica, because I am already swollen all the time.

Debbie

ButterflyRN
08-19-2009, 07:28 AM
They thought a few months ago that I had Fibromyalgia but it actually was the lupus attacking my muscles. But before that was determined I was on Lyrica...it did help me some. It relieved the pain so with the addition of Tramadol and tylenol I was able to finally lay on my back. My pain started in my back and then went to my muscles in my thighs and upper arms. As I said the back pain was so bad I could not lay down and get sleep. It was awful!

Everyone has given you wonderful advice here! Definately look into fibromyalgia and have your rheum test your pressure points! Fibro can be a frustrating diagnosis still for some because it hasn't been one of the diseases that have been acknowledged until recently.

Good luck and keep us posted :cute:

Mellie
08-19-2009, 07:03 PM
Hey,

Thanks for your help. I have an appointment on Sept 10. to see how things are progressing.

Faith
08-20-2009, 12:01 AM
Hi Mellie,

I am sorry you are not feeling well. Another resource to look up in the local library is Daniel J. Wallace's Fibromyalgia for Patients and Families. It explains it in detail and it's related issues along with pictures and treatment suggestions.

Flexerill helps in the beginning; although sometimes our bodies get used to meds. Zanaflex 4 mg. helps relax the muscles as well.

I would definately get tested on the trigger points. Back, ribs, hips, legs and ankle pain is typical of fibromyalgia. I have Lupus as well. I can deferentiate between Lupus and Fibro. Lupus is pain in my joints, pleurisy (water around the heart), and my legs will feel as if I ran a 20 mile marathon.

Fibro hurts my legs as well; but effects it differently as if someone is pulling all my tendons out of my legs; or burning sensations and I feel as if I have run a 50 mile marathon and need a long hot soak in the tub.

Take care,

Faith

pandagirl
08-20-2009, 04:17 PM
I find it quite interesting that Lupus patients are told they have Fibro "in addition" to the Lupus when in fact Lupus can cause ALL of the pain..muscle/tendon/soft tissue/skin.:skeptical:

debbie-b
08-27-2009, 08:28 AM
They thought a few months ago that I had Fibromyalgia but it actually was the lupus attacking my muscles. But before that was determined I was on Lyrica...it did help me some. It relieved the pain so with the addition of Tramadol and tylenol I was able to finally lay on my back. My pain started in my back and then went to my muscles in my thighs and upper arms. As I said the back pain was so bad I could not lay down and get sleep. It was awful!

Everyone has given you wonderful advice here! Definately look into fibromyalgia and have your rheum test your pressure points! Fibro can be a frustrating diagnosis still for some because it hasn't been one of the diseases that have been acknowledged until recently.

Good luck and keep us posted :cute:
Hi ButterflyRn,

How did the doc determine, that the lupus was attacking your muscles? Like I said, I was dx with lupus, RA and fibro, but lately I have alot of muscle, skin and soft tissue pain. I know it can come from either lupus or fibro, but how would the doc know, what causes this awful pain?

Debbie

Faith
09-27-2009, 11:22 PM
Hi Mellie,

I would ask the rhuemy to perform the fibro pressure point test. It can be found in Dr. Daniel Wallace's Fibro for patients and families.

Ironically, I can tell the difference between Fibro and Lupus although everyone is different with different symptoms. Lupus, joint pain, temp, muscles feel locked up upon original dx. Fibro is upper, lower back, buttock to legs and feet pain (sometimes burning). Ribs hurt all around or I get "stuck" in a position and it's extremely painful to move but to not move as well, over exertion equals chest pain (costrochrondritis or pleurisy (lupus)). My shoulders "freeze" and I can't get dressed. Leg spasms at night into one right knot all the way to thigh, and can't bear weight. Only relief, soaking in hot tub of water.

As Saysusie said Fibro is not life threatening like Lupus. Between the two, I hate fibro as it doesn't give a moment's rest. It's always there causing pain and I never get a rest or break; just more meds which I absolutately hate but in order to function a must have. Currently seeing pain management doctor for severe spasms and back pain.

I don't know if this helps or not. Everyone is different. I hope you get the pressure point test. A good rhuemy will know what you are asking for.

Take care,

Faith

lucky7
09-28-2009, 12:45 PM
I also have Fibro on top of the lupus as well as some other "piggy-back" diseases as well. Since lupus attacks our bodies from head to toe inside and out, its bound to kick in some things due to our bodies being attacked so hard and so often. Sending you HUGS!!!! XXXXXXXXXX