Author Topic: Living with Sjogren's: It's all in your head, not that bad, you're making it up  (Read 909 times)

swf994

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I'd like to survey members on how people they know (family, friends, coworkers, etc.) deal with their having Sjogren's.

I'm probably not the first to ask and am sure you've heard it all:

It's all in your head, it's not that bad, you're making it up, you must have been doing something wrong, if only you would follow my advice, I never have this problem so you must not be trying very hard, etc.

If there are already threads collecting such "impact statements," they may be worth combining into one and stickying.

« Last Edit: May 10, 2018, 03:30:26 PM by swf994 »

lorigacc

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My family does not deal with it.  They believe its all due to the aging process. When I do try to talk, about it...I have pretty much figured out that nobody wants to hear about it.  I feel the same about the majority of my doctors, I feel like they just don't want to hear about it anymore. I feel very alone in this disease. That is why this forum is so important, because the people here "get it".
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Seizure disorder, Neuropathy
   Plaquenil, Methotrexate, Gabapentin, Prinivil, Amlodipine, Folic Acid, Fish oil, Vit D, OsCal, Align, Ecotrin, Zantac

Carolina

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Dear swf944,

People don't get Sjogren's Syndrome because people don't understand conditions that are:  1.  Chronic conditions, 2.  conditions people don't know much about, 3.  conditions that involve parts of the body that people don't even know exist (Immune System), 4.  conditions that strike women harder than men, 5.  conditions that occur more often in people over 50, 6.  conditions that don't 'show' with obvious manifestations (think big purple spots), all of these are reasons that people have difficulties accepting the condition.

People don't accept that Sjogren's is 'real':  It must be 'all in your head' or you're just getting old, suck it up.  I've heard this from doctors!  So, it doesn't work trying to get acceptance or understanding, just smile and nod, and change doctors if you are dealing with a doctor who just doesn't get it.

People often know that Lupus is serious!  I have heard that sometimes people with Sjogren's or other AI conditions will 'say' they have Lupus, since Lupus is more easily understood as a 'serious condition that most people don't understand but realize is a big deal'.

People suggest the most bizarre solutions.  Changes in diet, supplements, various treatments.  Just smile and nod.  There ARE changes in diet, supplements, treatments that can help, of course, but not often what someone's relative/friend found helpful.  Look to this forum for ideas that CAN help.

Really, what other people think of us is something we have no control over.  It hurts when our family members don't seem to care, I understand. 

When it is doctors who don't care or understand, it is more serious, but trying to get care from a doctor who doesn't understand, is a waste of energy.  This is far more complicated if you live where there are few doctors, or are constrained by an insurance plan that limits your access to medical professionals.

Our Sjogren's World Forum offers acceptance and understanding, in addition to ideas for treatment, both medical and non-medical.

You are not alone.

Hugs,  Elaine
« Last Edit: May 11, 2018, 12:16:30 PM by Carolina »
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Joe S.

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"Spoon Theory" helps people (including us) to better understand our chronic condition. If you have not read it I suggest that you do.

Our doctors do not have an effective treatment model for Sjogren's or any other chronic illness. As each individual is unique, it is up to us to find what works for us. In other words what works for me may not work for you. To a doctor, if they can not help you this makes them feel like they have failed. No one likes to admit their failures.

i like to retell the story of a Lupus patient in rural Minnesota. At one time Lupus was a 5 year death sentence once you got it. (I think it was due to the medications). Any way, she took a holistic approach. Tia Chi, sun protection, meditation, supplementation.  After she hit the 5 year mark, her doctors at the University of Minnesota started to listen to her and changed their recommended protocols.

After an auto accident left me with chronic pain I started and facilitated a chronic pain support group. My mother and father were chemical dependency workers. I read all of the monographs that they had on Chronic pain and its management. It was not a lot to read. After 7 years and lots of tests the diagnosis changed to Fibromyalgia.

Through the group, we learned what worked and what did not. Tai Chi (which I do not remember) did help with range of motion and strengh. Supplements in the beginning were hit and miss. Reflexology provided immediate relief for everyone but smokers. Massage to trigger muscle relaxation depended on their type of pain. For one gal it was Ice massage.

The local hospital started a pain management group and made a donation to our parent organization (LSS) to shut us down. We still connect via phone from time to time 30 years later. Most of us never thought we would live this long. A key to long life is being in charge of your pain management.

You can check my signature for some of the techniques that I use to manage my pain. I became a Reiki Master, learned mahy types of massage and reflexology. I learned acupressure, self hypnosis, and meditation. I read up on homeopathy, enzyme therapy, vitamins, minerals, and other supplements. Find what works for you. 
 
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Lotus1

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Yes, think we've all been through this with family & friends, doctors!

I've heard of doctors who get sick turn to alternative for help.
On the news the other day a Dr who got Parkinsons helped herself by diet and got well:
heaps of vegetables (juiced I imagine to consume enough), a little meat, healthy fats.
She didn't mention supplements, but probably did use supps.

A friend's father with Diabetes 1 turned to diet, juicing vegies etc and his diabetes 1 left in a short time.
18 mnths or so later they went off diet.
His diabetes 1 returned immediately.

Nutrition seems an important key to disease full stop.
We need to work out how to get a huge dose of nutrition from food it appears.

I read 1 tsp bicarb soda in water helps RA so am taking organic bicarb soda, seems to be working.
Bicarb soda is also a great alkalizer. 
Most of our bodies are acidic, not good for inflammation.

Lately I've researched medical cannabis & was fascinated how helpful it can be for many illnesses including auto immune/cancer (especially pain, fatigue, depression, cancer).
Don't think it helps with dry eyes/mouth, what a shame.
Micro doses, start low, go slow so don't get on a high like smoking the plant socially.

I've med cann treatment in mind if I'm diagnosed with lymphoma again.
I have an MRI for a lump on right cheek today.
Radiologist thinks it a fatty lump which I'm hoping is the case.
Hematologist thinks lymphoma like 2015.
Both are looking at the same ultrasound.
If the MRI shows a mass then I'll have a needle biopsy.
Hoping a biopsy won't be necessary & it's end of story.
Otherwise I'll be convincing the hematologist to refer me to a med cann dr. (the procedure here).

Yes, seems we need to find our own way of helping ourselves with this nasty illness.

All the best to everyone, don't give up.

Lotus1

eye2dry

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I find that some drs jump right to the depression diagnosis.......
Their second choice diagnosis is your perimenopausal/in menopause.


Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

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araminta

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I've only told my husband about these symptoms, and while he's kind and sympathetic, I have a strong feeling that he thinks they're due to stress, and that he humours me by going along with what I'm saying!  I think the fact that we sometimes have better and more energetic days makes it harder for people to believe there's anything wrong. 
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

swf994

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I think it's important to emphasize that "X is screwing up my life" to dispel any notion that we're only bringing this up in the sense of "isn't this interesting."

Because to other people, no, it's not.

Then I get the sense that they think I'm apologizing to them in some way, which provokes the "oh no, you're just fine" response.

Then you get, "oh, I have that too, I know how it is," because they figure you're looking for sympathy.

It's interesting how nobody talks like this to people in wheelchairs, with conditions that are more obvious.

Those are easy, they've seen them on TV.
« Last Edit: May 11, 2018, 05:22:51 AM by swf994 »