Author Topic: Doctors  (Read 364 times)

Bayougirl

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Doctors
« on: January 10, 2017, 07:49:27 AM »
Hey guys I'm new to the forum so excited! I am a Sj?gren's patient with possible fibemyalgia. The more I read on different forums the pain from Sj?gren's can mimic fibromyalgia, so many doctors say you have fibermyalgia also. Just wondering if anyone is around the Baton Rouge area? We can maybe share info about what Drs we use in the area??

quietdynamics

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Re: Doctors
« Reply #1 on: January 10, 2017, 08:34:54 AM »
Bayougirl.. Weclome to the forum.
Here is a US list of support groups by state, it has contact numbers so hopefully someone may be able to advise you or perhaps someone here will come along.

I have SJS and Fibro. SJS pain is caused by inflammation, while Fibro pain "Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals."

Tricky as SJS can cause inflammation of nerves so which comes first?

In any event the treatment protocol is different.
However both can be managed. It may take some tweaking with an astute Dr.
Neurologist awhile back suggested I keep a symptom diary (later I added notes regarding effects of medications) .. overtime a pattern tends to show and then we learn our personal triggers. This allows us to make some life adjustments.. perhaps not take on so many tasks at one time, an anti-inflammation diet, better sleep habits, etc.

Ask Dr. to check Vit B's and D levels as well. Being low is common. One or the other can affect nerves or bones.
My best to you.
« Last Edit: January 10, 2017, 08:37:01 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Jasper

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Re: Doctors
« Reply #2 on: January 10, 2017, 12:42:55 PM »
Many people with Sjogren's Disease are misdiagnosed as having Fibromyalgia.

I would be very skeptical of any doctor who handed me a diagnosis of Fibromyalgia and would never go back to him/her.

Many people with Sjogren's Disease have Small Fiber Neuropathy, which needs to be diagnosed with skin biopsies. Small Fiber Neuropathy is often misdiagnosed as Fibromyalgia.

I would suggest finding a Rheumatologist at a Sjogren's Clinic or a Rheumatologist at a large teaching medical center or university medical center. They tend to be more currnt on diagnosis and treatment.
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

cccourt1942

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Re: Doctors
« Reply #3 on: January 10, 2017, 03:19:06 PM »
I agree with Jasper..wholeheartedy.  There is no test for fibromyalgia.  The pressure point evaluation is strictly subjective.  The medications for fibromyalgia were not compounded/created for fibromyalgia by itself.  If you have SjS, I truly believe that is ALL you have and can leave that fibro dx behind.

There are many here who carry both dxes.  Some meds for SjS will help with symptoms of fibro. Thing is, the same symptoms.  Do as Jasper advised re: finding physician and location of physicians who KNOW Sjogren's.

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Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

quietdynamics

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Re: Doctors
« Reply #4 on: January 10, 2017, 03:47:19 PM »
Do not dismiss nor take the Dx of Fibro lightly. I questioned more than once if it was correct. It is. The combination SJS/Fibro is a double whammy impact on self and family. Good news is they can be managed.

Rhuem Director @ one of the few SJS clinic in country.
Dr. confirmed Fibro along with SJS. As did original Rheum Chief at Medical hospital.
SJS and Fibro have different treatment protocols.
Pain gets confusing because it tends to radiate. Pain in but one symptom.
Tender points are used, but, today so are quadrants and history. Some believe Fibro patients are help by Neurologist (depends on specialists areas)

Symptoms of fibromyalgia include:
Widespread pain. The pain associated with fibromyalgia often is described as a constant dull ache that has lasted for at least three months. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fatigue. People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is often disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea.
Cognitive difficulties. A symptom commonly referred to as "fibro fog" impairs the ability to focus, pay attention and concentrate on mental tasks.
Other problems. Many people who have fibromyalgia also may experience depression, headaches, and pain or cramping in the lower abdomen.

At higher tier of SJS med, Fibro was left untouched, those symptoms where then obvious, presently singularly.

http://www.hopkinsmedicine.org/healthlibrary/conditions/orthopaedic_disorders/fibromyalgia_85,P00913/

"Fibromyalgia and joint pain related to SS may be hard to differentiate. Fibromyalgia pain is present on a nearly daily basis, with flares of increased pain triggered by exertion, lack of sleep and stress."   https://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/joint-pain/

PennMed (where I go) and Hopkins have Sjogrens Clinics, and continue their research.
« Last Edit: January 10, 2017, 04:16:59 PM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

warmwaters

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Re: Doctors
« Reply #5 on: January 10, 2017, 04:35:21 PM »
Clearly there are many opinions on having both Sjogren's and fibromyalgia. I had a (backup) rheumy diagnose me with fibromyalgia several years after my Sjogren's diagnosis, based on my reaction to being pressed on the touch points (or tender points).  However, there's a high overlap between fibro symptoms and Sjogren's

Can occur in both
Fatigue
Connective point tenderness
Depression
muscle pain
sleep disturbance
increased symptoms under stress or weather changes (in autoimmune a "flare")
IBS

Sjogren's also has symptoms related to dry eyes, mouth, etc.

I discussed this second diagnosis with my regular rheumy, who characterized it this way - you may have fibromyalgia if you have no other source of the symptoms. But all of the symptoms you do have can have their origin in autoimmune dysfunction, so I wouldn't label it fibromyalgia.

I think the key thing is to look at treatments and overlaps. Is there something in the fibro treatment suite that provides the possibility of symptom relief that you wouldn't get from sjogren's treatment?
« Last Edit: January 11, 2017, 05:18:44 PM by warmwaters »
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

SjoDry

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Re: Doctors
« Reply #6 on: January 11, 2017, 04:03:05 AM »
Bayougirl,

Dr. Julius Birnbaum ( one of the leading SS docs in the country )reported that when they do skin biopsies on Fibro patients, they are finding that they actually have SS.

Take care.
SjoDry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;