So it's been about two months since I posted... Sorry for not being more predictable but, life happens...
I have started at least 5 entries since my last gap but unable to complete or tie together the ramblings & information coherently (seems to be a running theme)
Today, however, I felt compelled to vent & since that happens usually only between me and my notes I figured I would share - just incase you might be feeling the same or can relate.
Having sought treatment(s) and pain management for many years (since my teens) with regard to menses & spinal issues primarily... I began having allot of abdominal issues and apparent migraine syndrome that would frequently require emergency intervention (20s).
Suddenly faced with enormous amounts of stress (physical, emotional, & even surgical) new health complications began to emerge - mysterious signs & symptoms erupted. Partnered with my GP I began taking closer account of my health issues & seeking relief when we discovered my association with Dercum's Disease (30s).
Ultimately, the numerous referrals to specialists & surgeons, etc.. resulted in treatments that offered many pharmaceuticals but no real relief only compounding my issues with no affect or side effects.
My second divorce finalized, no insurance, and having turned 40 I sought new attainable holistically based approaches for self treatment. Over the next 5±yrs I explored my diagnosis' and educated myself as much as possible, doing what I could to manage my issues. Avoidance & distraction were my best friend's, especially in light of the emotional treatment I had suffered with my ex husband... I had learned that it didn't do any good to discuss it. My health issues were too complicated for doctor's how did I expect to have any level of understanding from others.
I started using my spoons more wisely. I had relocated, was now in a supportive relationship, and reverted to a less mentally demanding occupation since brain fog, headaches, pain, et al made it much too difficult to remain in real estate. Besides the economy had tanked... & although restaurant/food service was physically demanding I made it work... Until it didn't!
I ended up disabled by abdominal & spinal symptoms for about 4 months. I sought out emergency intervention when I got scared... I experienced incontinence (both kinds) and lots of pelvic & low back pain.
More diagnosis added to the ever growing list, including; CFS/ME, Polycystic Ovary, Barrett's Esophagus, & a bone cyst @ t12 l1.
Recommended treatment; my umpteenth referral to pain management. Which I was unable to access because of insurance limitations & financial constraints.
Fast forward to pushing 50 & my latest health crisis (precipitated by a virus - suspected DV-68) kept me house bound, if not bedridden, for 2yrs & unable to work since 2014.
Yes, fortunately or unfortunately, depending on your point of view... I again sought out medical intervention.
This time rheumatology was the focal discipline and even more diagnosis were added to the list; MCTD & uSpa were the highlights (more details @ close). I was referred to additional specialist of other disciplines, for this time even my vision & hearing was comprised, & my throat required surgery.
After months and months of what seemed to be pharmaceutical treatments thrown at a wall to see what sticks, to no avail..
Further recommended treatment included DMARDS & BIO drugs & a genetic specialist.
Again I bowed out. Opting not to pursue these class of drugs as a form of treatment. I have however further explored my lineage/pedigree of genetic links, and pursued a full exome sequencing.
I want relief ~ I don't want to be practiced on!! That's what doc's do... They 'practice' medicine. Imho
I do not recommend anyone follow in my footsteps. I have a unique set of circumstances. I frequently consider relenting but time and time again it has proven counterintuitive & financially ruining, for me. I applied for social security but unless I follow doctor's orders - I'm not entitled.
So I continue my education on me as the medical community continues to make new discoveries hoping one day the two will intersect, possibly through precision medicine, in the future.
In the meanwhile, I vent & share some of what I learn... Maybe it will help in someone else's journey ...
Here's a fantastic link that (will open in new window) gave me some validation today;
https://www.healthrising.org/forums/threads/one-gene-many-disorders-genetic-finding-could-help-explain-pots-eds-ibs-fm-me-cfs-and-others.5015/
& Here's more about some of my diagnosis ;
Mixed connective tissue disease (MCTD), which was first described in 1972, is "classically" considered as an "overlap," or mix, of three specific connective-tissue diseases: systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern of illness (that is, with MCTD) have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of the three component illnesses, most commonly the scleroderma features.
{Component illnesses x3 within these brackets to follow}
¹{Systemic sclerosis (SSc) is a multisystem autoimmune disease in which there is increased fibroblast activity resulting in abnormal growth of connective tissue. This causes vascular damage and fibrosis. Fibrosis occurs in skin, the gastrointestinal (GI) tract, heart, lungs and other internal organs. Vascular manifestations include secondary Raynaud's phenomenon, ischaemia of extremities, pulmonary arterial hypertension and renal disease }
²{Polymyositis.
characterized by inflammation and degeneration of the muscles.
Dermatomyositis is polymyositis accompanied by skin inflammation.
Muscle damage may cause muscle pain and difficulty lifting the arms above the shoulders, climbing stairs, or arising from a sitting position.
The cause of polymyositis and dermatomyositis is unknown. Viruses or autoimmune reactions may play a role. Cancer may also trigger polymyositis and dermatomyositis. It is possible that an immune reaction against cancer may be directed against a substance in the muscles. The disorders tend to run in families.}
³{Systemic lupus erythematosus (SLE), also known simply as lupus, is an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body. Symptoms vary between people and may be mild to severe. Common symptoms include painful and swollen joints, fever, chest pain, hair loss, mouth ulcers, swollen lymph nodes, feeling tired, and a red rash which is most commonly on the face. Often there are periods of illness, called flares, and periods of remission when there are few symptoms.}
Undifferentiated Spondyloarthropathyis a term used to describe the condition where presentation does not meet the criteria for a definitive diagnosis of ankylosing spondylitis (AS).
Ankylosing spondylitis (AS), a spondyloarthropathy, is a chronic, multisystem inflammatory disorder involving primarily the sacroiliac (SI) joints and the axial skeleton.
General symptoms of AS include the following:
Those related to inflammatory back pain - Stiffness of the spine and kyphosis resulting in a stooped posture are characteristic of advanced-stage AS.
Peripheral enthesitis [ inflammation of the entheses, the sites where tendons or ligaments insert into the bone ] and arthritis
Constitutional [.Constitutional symptoms refers to a group of symptoms that can affect many different systems of the body.
Examples include weight loss, fevers, fevers of unknown origin, hyperhidrosis, generalized hyperhidrosis, chronic pain, fatigue, dyspnea, and malaise.
Other examples include chills, night sweats, and decreased appetite.]
and organ-specific extra-articular manifestations which include the following:
Uveitis
Uveitis occurs when the middle layer of the eyeball gets inflamed (red and swollen). This layer, called the uvea, has many blood vessels that nourish the eye. Uveitis can damage vital eye tissue, leading to permanent vision loss via retinal detachment.
Cardiovascular diseases
Pulmonary disease
Renal disease
Neurologic disease
Gastrointestinal (GI) diseases
Metabolic bone disease
Inflammatory back pain - 90%
Buttock pain - 80%
Enthesitis - 85%
Peripheral arthritis - 35%
Dactylitis - 17%
& Fatigue is another common complaint, occurring in approximately 65% of patients with AS.
Increased levels of fatigue are associated with increased pain and stiffness and decreased functional capacity.
