Sjogrens

[Heritage1961]

Hi

I have had many changes to my health/body etc since I last sent a post.

I now have Brachia Plexus which places further pressure on the heart...limited capabilities in both arms...Sleeping is a very painful/frightening challenge. From inflamed/painful armpits (more so on the left) which ascerbates the heart and excruciating smashed collarbone feeling...note whole upper trunk now extremely dry...constant flare..as soon as your head leans back or touches the pillow...use 3 pillows to sit up...holding left arm above my head brings relief....

I also had raised BPs before this some extreme which resulted in ongoing head pain...hyped up hypersensitivity to light/sound...this is permanent now...ended up with many ulcerated sores on my head...and crawling sensations over my face and head...Had a MRI scan of frontal lobe which showed some scattered lesions relevant to Sjogrens (lack of oxygen included)...glad I kept the original request form as Doctor in a surgery denied I had issues even though his first response was very professional/extremely concerned and exploratory...probably because anothe doctor in the surgery (NEW Doctor/Surgery) had prescscribed some very strong fast moving antiinflammatories which ascerbated and created this issue. (Note specialists has said no more anti inflamatories/steroids etc???) Calmatives (Merdyndol) accepted. Doctor cancelled off to Calmatives???.

I have since seen a new Rheumatoligist in Perth who was horrified at the letter sent by the first doctor just stating I had Sjogrens & Frybromyalgia with no history at all attached inclusive of the Brain MRI and request form.

He confirmed its 'very obvious' I am Hypersentitive...gave him a brief history of origins 30 years ago...diagnosis 24 years ago and treatments which ascerbated my condition.

Note all doctors ask 'where does it hurt' and are totally unprepared for responses...like you are some 'nut job' or depressed???

I recently purchased a book written by 2 women with Sjogrens....not they worked in with some doctors probably to get the book published and sales etc....but you may all find some relevance and answers in this that may help acknowledge how you feel and react to peoples lack of empathy and understanding around Sjogrens...I definetly have. 'The Sjogrens Syndrome "Survival Guide' Terri P. Rumpf, Ph. D, and Katherine Morland Hammitt. I bought this online and it took a few weeks to get here. A must read for anyone with Sjogrens or looking for answers....there a lot there...plus multiple symptoms and issues I have had for years with 'no answers' from the Medical Profession.

Note anyone with Sjogrens will be naturally sensitive to medications! Especially in light of other body issues concurring at the same time.

[honeybug]

Hi Heritage1961 🤗🌿🌸🦋

I’m sooooo very sorry to hear of all you’re suffering. I also have Sjogrens and Fibromyalgia along with dozens of other comorbidities.

You can google Fibromyalgia 200+ symptoms and pull up the shocking results. There may be some overlapping symptoms and might be helpful to you hun.

I just said a special prayer for you in your medical journey for the help you need and the best medical care possible.

Please take care sweetie.

Love and prayers

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

PS Thank you for your important data on Sjögrens. I saved the books info. Thanks hun.

[SamTheTurtle]

Wow! I have been diagnosed with Sjogrens some time ago and I have been spared I suppose…. my symptoms are very mild.

I have been delving into alternate medicine/technologies - frequency healing; Dr. Royal Rife, Dr Hulda Clark. Dr. Rife initiated all of this and was promptly rewarded by the medical powers-that-be/were (at that time) with ridicule, etc. to the point of almost shutting down his technologies of frequencies healing. Dr Hulda Clark along with others picked up the remaining pieces. Dr. Clark invented the “Zapper” which essentially destroys all diseases. It sounds unbelievable; read whatever reasonable history you can about Dr. Royal Rife’s work (the naysayers obviously work for big pharma, seriously). As well Dr. Hulda Clark has written books- Cure for all Diseases, Cure for all Cancers, Cure for Advanced Cancers as well as others. Her books are available as FREE .pdf downloads; paper copy books are also available. Check that stuff out. I have found very little re: Sjogren’s. Their material does contain material on Fibro and numerous other diseases as well as symptoms. Since starting to use these technologies I feel much better. Seriously, check out those technologies! Other people are adding information in an ongoing basis.