My Tumid Lupus Fibromyalgia Sjogren’s Syndrome Journey


My Journey

Year One:  Started Walking through the pain thinking it was my weight that became uncontrollable. Nothing moved but the pain spread throughout my body.  Still silent to everyone in my life but all of my relationships have suffered.  My clothes don’t fit, I’m hormonal, my menstrual cycle is 3 times heavier which is bad for a heavy bleeder.  Depression, anxiety and my already disturbingly repeated PTSD symptoms (will discuss my PTSD on a separate page) were running rampant.  The only bright spot in this time period was my nightmares.  They stopped but now reality held my fears.  There was something wrong and it was different this time.  My skin was getting worse and my aches felt like there was a fire in my bones, things need to change.

Year Two:  Everything that was wrong increased tremendously yet I kept working out, walking and attempting to find out why I was now menstruating 3 weeks out of 4, overweight, hair falling out, skin blotches increasing because of the stress, not sleeping.  My muscles hurt now.  In the morning I noticed it was hard to turn over and stand up at first.  Imagine the skeleton you rose with daily feel like rusted tin.  After I got moving things would be tolerable.  I joined a gym to help motivate myself into taking classes, the walking alone isn’t enough.  Yes those close to me let me know in many ways my weight was shocking but I was more concerned with my inner turmoil and pain.  By the summer I hid my misery well through every occasion, it became clear how people suffer in silence as life continues.

Year Three:   Life always makes a point to teach you who your real friends and family are while your health is deteriorating.  Thankfully my past helped me survive the extremely hard days.  (I will come back to childhood trauma and my conditions).   This year I promised to take care of myself more and only deal with my expectations.  I need to take care of myself more truly.  I gave up starches, then fast food except for special occasions.  I still worked out as often as I could though I was taking a dresser full of pills just to wake up 1/4 less like a tin man.  And just as I thought these extreme menopause symptoms were controllable,  my doctor informed me it was actually incurable fibroids and surgery was the only answer.  It would happen January 10th of my year four.  As I crossed all of my tests for surgery and years of skin tests, both of my doctors added Tumid Lupus and Fibromyalgia to the things wrong with my health.  I couldn’t breathe.  I stopped eating table sugar,  multiple starches in one sitting and more vegetables.  It explained a lot yet I didn’t understand at all.  By November I asked to be baptized at my church.  I wanted to check off as many items as I could, just in case something happened during my surgery.   I knew things were getting serious but only on a small level.  I was baptized the first week in December with my sister in laws, mother in law and friends near and far cheering me on.  Still walking.

Year Four:  New Year’s was just like the year before.  By the 10th my nerves were shot from fear.  I kissed my man and walked out of my door with my sister in law to start taking care of myself.  I chanted a silent prayer to myself.  “I will restore and maintain optimal health mentally, physically, emotionally and spiritually.  Thank you, Thank you, Thank you.”  Thanking God, the universe and all that is good until I woke up in recovery.  The start of a new way, another way.  After a week I was able to walk to the corner with my man walking next to me.  The doctor said walking and exercise puts all muscles back in place easier.  Of course, she meant for the surgery and not Fibro or Lupus; they don’t end or stop because of surgery.  I tried to stay mobile but in the northeast winter is brutal after January.  Now I have not been told anything about my conditions other than pamphlets and the base medications at this point.  So as I continue through summer, my aching was severely tolerable if that makes any sense.  There were more bad days than good days but only on the nerve side.  My energy was great, blood counts, the new medication to ease Tumid Lupus eased skin and joint flares started working but the new symptoms set in for the rest of year four.  I do notice my clothes fitting better with each walk or hellish class.

Year five:  (2018) I started researching the causes of fibromyalgia and lupus flares.   So I found out that diet changes help with exercise, vitamins, rest, being mindful, letting go of stress (things and people), along with staying on the lowest dosage of Neurontin and Lupus medication possible.  Soon as I made that choice things came to me.  I stopped eating all sugar and anything that creates sugar except on my birthday and special occasions.  And since I still do my normal routine of working out, low impact to just moving all works.  The first few weeks were shocking to the system but it mellowing out so far.    Then my best friend and Personal Accountability partner and fellow Fibro sufferer introduced me to CBDs.  It had been legal in PA for awhile but before researching the benefits, I thought smoking was the only slight relief worthy of mention.  I received my first bottle right after Easter and was pleasantly surprised the first few days.  My health improved daily and my weight loss changed.  I started losing inches instead of dropping numbers since beginning strength training.  Another thing added after reading it helps with sleep, muscle fatigue, and bone aches.  So warding off the pain is my gameplan.  I know its there but how do I delay or make the symptoms so faint, it can be lived with at a much lower tolerance than I can do easily.  There are no medals for enduring pain only strain on yourself.

Finally, I found that turmeric helps pain and inflammation.  Not minding the taste I did my research and I’ve been taking the essential oil with my CBD oil and medications for the last 4 days.  I have been feeling so great!  I have only wonderful things to say like.  Since first taking the CBDs I have not taken one pain pill.  It may seem short term to you but to me it is AWESOME!  I even went to sleep without muscle relaxers once I added the essential turmeric oil.   My mobility is fully flexible and the twinges I feel when it rains (the last two days) are a slight headache to annoying pain.  I just took a muscle relaxer but that is after two days and its a rainy nasty afternoon.  No sciatica, ever moving, throbbing, needle, knife, burning, cold then hot pain.  No anxiety, fear or PTSD symptoms.  I am not cured just able to live with it on this Wednesday.  So you are not alone and I will be posting how my journey goes often.  This dis-ease can be eased if not erased one day.



You can still give for a cure for Fibromyalgia:

CBD/Tumeric Information

CBD and Turmeric, a Miracle Combination


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