View Full Version : It's not Lupus.

02-17-2013, 09:16 PM
Today has completely blown me out of the water. I have been told I probably don't have lupus and that it is likely to be fibromyalgia. It makes so much more sense - I've always been confused by my positive ANAs with a couple of patterns, but borderline inflammation and low ds-dna screen, and other tests just coming back very vaguely.

My pain has changed over time into more muscle pain than joint pain...it makes sense now.

I feel silly for spending so much time here, talking away like I have lupus, but I have been told by 2 GPs and a Rheumy that I do, so as you all will know you cling to that diagnosis because it explains why you feel so terrible.

Well fibro seems to explain it better, and honestly I am relieved. I am still dealing with the sadness that accompanies every diagnosis - even if it is a 'better' one - because I still have it for life and with fibro there is a lot mixed up in the pshycological side of it too. Having bipolar disorder I think it leaves me questioning a lot. It's bizarre!

Anyway my rheumy was fab (1st time I've seen him) and he said he could be wrong so to be wary but reduce and come off the pred. YES! I love the fact he admits he may be wrong too - finally a doctor who doesn't say he's 100% when he's not!! He was light-hearted and funny but made me feel accepted and made my symptoms feel real and recognised.

So I'm going to start taking amitriptyline - I'm hoping it doesn't cause any mood issues as I'm on finely balanced stabilisers and anti-d's already for the bipolar. Wish me luck everyone! And thank you for your support on this journey.

02-17-2013, 09:31 PM
please remember this site is open to people with lupus....... and friends of people with lupus.

therefore you are more than welcome to stay with us.

I am glad that you have an active doctor.
I too have fibro.
many of us have both lupus and fibro.
they are both auto immune in nature, and many of the symptoms are similar.

i will ad a post that i have made before, explaining what i know about fibro.

02-17-2013, 09:34 PM
Fibromyalgia (FM) is amulti-system illness. This illness also produces dramatic manifestations indifferent organs and systems of the body.
We are not dealing with a localized ailment; rather, it is ourmain regulatory system that is not working properly.

The autonomicnervous system (ANS) controls the function of the organs and systems. It is"autonomic" because our mind does not govern its performance. The ANSis the interface between mind and body functions.
The peripheralautonomic system is divided into two branches; sympathetic and parasympathetic.The ANS represents the ying-yang concept of ancient eastern cultures.
Sympathetic activation prepares the whole body forfight or flight in response to stress or emergencies; in contrast, parasympathetic tone favours digestivefunctions and sleep.
Relentless hyperactivity of thesympathetic nervous system continues 24 hours a day. Characterized as asympathetic nervous system that is persistently hyperactive but hypo-reactiveto stress.

There is ample evidence to sustain thefact that FM pain is real as attested by different studies demonstrating veryhigh levels of the powerful pain-transmitting substance P in the cerebrospinalfluid of patients. This means that the problem lies in the pain-transmittingnerve itself.
The most widely acknowledgedbiochemical abnormality is abnormally low serotonin levels.
The combination of the, high levels of substance P,and low levels of Serotonin, may be the cause of FM

The most common associatedconditions include the following:
Irritablebowel syndrome Tension/migraineheadaches Dysmenorrhoea
Nondermatomal paresthesia Temporomandibularjoint syndrome Mitral valve prolapse
Interstitial cystitis,vulvodynia Female urethral syndrome Vulvarvestibulitis
Hypermobility syndrome Restless legs syndrome Allergy
Enthesopathies Cognitive dysfunction Vestibulardisorders
Esophagealdysmotility Oculardisturbances Premenstrual syndrome (PMS)
Anxiety disorders Pulmonary symptoms Depression
Raynaud phenomenon Myofascial painsyndrome Sleepdisorders
Thyroid dysfunction Siliconebreast implant syndrome Lymedisease
Rheumatoid arthritis Systemiclupus erythematosus Sjögrensyndrome
Infections Osteoarthritis Chronicfatigue syndrome
Carpal tunnel syndrome Hyperventilation Visionproblems
Multiplechemical sensitivity syndrome

Every-dayactivities take longer in fibromyalgia patients, they need more time to getstarted in the morning and often require extra rest periods during the day.They have difficulty with repetitive sustained motor tasks, unless frequenttime-outs are taken. Tasks may be well tolerated for short periods of time, butwhen carried out for prolonged periods become aggravating factors. Activitiessuch as prolonged sitting or standing and environmental stressors such ascoldness, excessive noise and rigid time/performance expectations oftenaggravate fibromyalgia symptoms. They describe a "window ofopportunity" for constructive work that typically extends from about 10 amto 2 p.m.

Recentstudies have shown that approximately one-third of patients with lupus alsohave fibromyalgia. It is important to understand that the fibromyalgia in thesepatients develops after the lupus has become well established.

In general, lupus patientswho are undergoing a flare have findings; such as evidence of true arthritis(usually with joint swelling), skin rashes, sores in their mouth, fever, hairfall or evidence of specific organ disease such as pleurisy or microscopicamounts of blood and protein in the urine. Furthermore, in active lupus, bloodtests such as the sedimentation rate often become elevated, the white count(particularly the lymphocyte subset) becomes depressed and there is often anincrease in the level of anti-DNA antibodies. None of these findings are afeature of fibromyalgia

Using singlephoton emission computed tomography (SPECT); researchers in France wereable to detect functional abnormalities in certain regions in the brains ofpatients diagnosed with fibromyalgia, reinforcing the idea that symptoms of thedisorder are related to a dysfunction in those parts of the brain where pain isprocessed.
The researchersconfirmed that patients with the syndrome exhibited brain perfusionabnormalities in comparison to the healthy subjects. Further, theseabnormalities were found to be directly correlated with the severity of thedisease. An increase in perfusion (hyperperfusion) was found in that region ofthe brain known to discriminate pain intensity, and a decrease (hypoperfusion)was found within those areas thought to be involved in emotional responses topain.

02-17-2013, 10:00 PM
Shine, don't feel silly for posting here just because your diagnosis has changed. We all still have similar experiences, just like Steve said-- many folks here deal with fibromyalgia. And then there's people like me, who don't know what the heck is going wrong.

I'm happy to hear you're giving amitriptyline a try. Everyone reacts to drugs differently, but amitriptyline has been my wonder drug for the weird nerve (?) pain in my legs. I've gone from steady pain day in and day out to having many days where I barely notice pain at all. And only one side effect that doesn't really bother me-- little muscle jerks that I tend to get with any sort of medication that messes with neurotransmitters.

One thing about amitriptyline is it can make you really sleepy at first. Don't give up on it if you find yourself sleepy the first few weeks you're on it. For me, after about a week, the drowsiness went away. Nowadays, I take 25mg both morning and night, and the morning pill does not impact my alertness at all.

Glad to hear you're coming off prednisone, and I hope you feel better soon!