Feeling really sick now...

I've decided to blog here for therapy :scared: Thank goodness I know I'm amongst friends ;)

Bit of background...long term ME/CFS, FM, MCS & degenerative disc disease. More recently flares of severe cervical spine pain thought to be sero-negative spondyloarthropathy ?Psoriatic arthritis.
Recent onset severe dry eyes. Recent more severe MCS. Constant thirst & feelings of dehydration. All over muscle tenderness. Dry, tight sore muscles in upper back. Burning sensation in legs.

Today I managed to force myself to go on an outing into the city to see an exhibition of the history of world maps including that of Antartica, followed by a picnic in Sydney's Royal Botanic Gardens.

I enjoyed my day but am exhausted! I experienced what must be orthostatic intolerance in a big way as I was walking around the exhibition. Also found myself unable to fully read all the texts next to the displays. After all...I've been bedridden for 6 mths & housebound for another 6 mths...

I feel nauseous & dehydrated every morning. Had a couple of painful bouts of reflux oesophagitis, especially as I was trying to lie down to sleep. Have had a red throat recently...but it's not sore. Had a Chinese Massage & discovered the all over muscle tenderness, with worsening fatigue & weakness.

Decided to present to my local hospital (across the road from massage therapist).
Male Triage nurse said "Nausea is not considered an emergency. I think you should go to a medical centre". I said " I'm NOT leaving...I want to see a doctor!" with that he gave me the paperwork to fill & walked away.

I waited ages then fortunately got to see a really nice & compassionate, experienced lady doctor. Told her my "complex" story. She listened & gave me some reasonable advice & agreed to do some basic blood tests...FBC, UEC, LFT & BSL. I told her my ALP is always slightly elevated & no-one knows why!

I waited for my results...my blood sugar was checked again by finger prick test...then I was allowed to go home. My ALP, ALT and Total Protein were slightly elevated. All the other tests were OK. She advised me to see my Gastroenterolgist. As I am intolerant of most meds she could not prescribe me anything...and I have no intention of swallowing Mylanta...with all it's aluminium! I'll keep using Carafate (Sucralate) which my GP prescibed.

Welcome to my nightmare! :eek: and...:thumbsup: for reading!

Comments

Hi merylg.

Your health problems are really complicated. A nightmare is right. I'm sorry.

The exhibit of the history of world maps and picnic in the botanic gardens both sound enticing. But I guess that, despite the fun you had, this was all too much in one day.

Please take care.
 
Yes, you are among friends here, Meryl!

:hug::hug::hug:

Sorry that you had such a rough reaction to going out and that the past year has been so difficult. thanks for sharing here, writing it out helps and it helps others to be able to read what someone else is experiencing.

Take care.
 
Merry

Your bad overwhelms me so I thought I'd just pull a little thread - one thing I maybe could help with. It's an interesting thread beause it relates a bunch of things, turns out. Here is what I find on 'dry eye' at www.lef.org:

Sjgren's Syndrome

Approximately 4 million Americans suffer from Sjgren's syndrome, which was first identified in 1933 by the Swedish ophthalmologist Henrik Sjgren. About 90 percent of victims are women with a mean age of 50, although Sjgren's can strike any age group, even children (Talal N 1987).

The main symptoms of Sjgren's are chronic dryness of the eyes and mouth, but it is also associated with dryness in external genitalia, the ear, and the nose and throat area. There may also be decreased secretions in the gastrointestinal tract.

Sjgren's is an autoimmune disorder. The symptoms associated with Sjgren's are caused by the infiltration of immune-system cells, usually B and T lymphocytes, into the glands responsible for secreting fluid. Sjgren's has been associated with rheumatoid arthritis, systemic lupus erythematosus, scleroderma, and other connective tissue diseases (Talal N 1987). It has also been associated with autoimmune disorders in the thymus gland. Studies have shown that patients with Sjogren's may also suffer from thyroid disorders ( Lazarus MN et al 2005) .

Traditional treatment relies on cholinergics, or drugs that stimulate the parasympathetic nervoussystem, but they can have significant side effects. Nutritional therapy focuses on essential fatty acids, which have been shown to modulate the immune system. Lifestyle changes are also a valuable therapeutic tool.

Elevated liver enzymes occur in 25 percent of patients; liver enlargement in 33 percent; Raynaud's syndrome in 20 percent; fibromyalgia in 55 percent; and lymphoma in less than 5 percent (Carsons S 1998).

Other symptoms associated with Sjgren's include the following:
Nasal dryness, nosebleeds, congestion, and impaired taste and smell, as well as more serious conditions, such as bronchitis and pneumonia, caused by damage to mucous glands in the nose
Dryness in the eustachian tubes, which can lead to a clogged feeling in the ear and impaired hearing
Itchy, dry skin
Vaginal dryness
Nutritional malabsorption, caused by affected mucous lining of the stomach
Pancreatitis

Individuals with Sjgren's may develop neurological problems, such as impaired memory and reduced concentration (Sjgren's Syndrome Foundation). A French study linked the onset of facial palsy involving cranial nerves to Sjgren's (Rousso E et al 2005).

Sjgren's is diagnosed on the basis of the presence of specific autoantibodies and the presence of symptoms. Tests could be conducted to detect antibodies to Ro/SS-A or La/SS-B antigens. Researchers have also discovered increased levels of the antibody interleukin-18, an immunoregulatory and proinflammatory cytokine in patients with Sjgren's (Bombardieri M et al 2004). This cytokine interferes with acetylcholine, the messenger chemical that triggers saliva production.

Some researchers think that the underlying cause of autoimmune disorders like Sjgren's may be a flawed T cell response. T cells are lymphocytes that are trained in the thymus gland for their role in the immune system. However, if T cells are not schooled long enough in the thymus before being released, they tend to behave erratically, attacking healthy tissue.

Patients with Sjgren's show significant defects in T cell immunity (Gerli R 1989). Japanese researchers found that estrogen deficiency contributes to this dysfunctional T cell response (Ishimaru N et al 1999).

Depression, which is associated with Sjgren's (Stevenson HA et al 2004), can trigger the production of cytokines that interfere with salivary and lachrymal gland production.

Pharmaceutical Treatment of Sjgren's

The most common regimen includes drugs known as cholinergics as well as interferon-alpha (Venables PJ 2004). Cholinergics activate the parasympathetic system by mimicking acetylcholine, a neurotransmitter that stimulates the lachrymal and salivary glands. Two cholinergics are prescribed more frequently than any others:
Pilocarpine. The cholinergic pilocarpine has been shown to reduce the symptoms of xerostomia (dry eye). It can cause gastrointestinal upset (Nusair S 1999).
Cevimeline. The cholinergic cevimeline, taken at 30 mg three times daily, seems to be well tolerated and to provide substantive relief of dry eye. Twice that dosage was associated with an increase in the occurrence of adverse events, particularly gastrointestinal tract disorders. Cevimeline taken over prolonged periods or in too high doses can cause drowsiness, excessive sweating, and interference with night vision, as well as more serious side effects (Fife RS et al 2002).

Interferon has also been used in the treatment of Sjgren's. Among patients with primary Sjgren's syndrome, interferon has been shown to improve salivary output and decrease complaints of xerostomia without causing significant adverse medical events (Yamada S2005).

Essential Fatty Acids: Supporting Healthy Glands

Measurements in Sjgren's syndrome patients have shown that EFA deficiencies are present (Oxholm P et al 1998), and controlled clinical trials of supplementation with EFAs, including gamma-linolenic acid (GLA), have yielded positive results (Horrobin DF 1984).

Omega-3 and omega-6 fatty acids (EFAs) have been shown to alleviate symptoms of autoimmune disease by supporting the immune system and reducing inflammation (Harbige LS 1998; Horrobin DF 1984; Horrobin DF 1986; Oxholm P et al 1986). EFAs accomplish this in several ways:
Determining whether genes are expressed
Essential fatty acids support production of anti-inflammatory cytokines (Harbige LS 1998).

GLA. GLA is important to the production of the anti-inflammatory prostaglandin E1 (PGE1). Evening primrose oil, which is rich in GLA, may correct immunologic defects, halt atrophy of salivary and lachrymal glands, and increase the beneficial PGE1. Direct supplementation with GLA has resulted in clinical improvement in Sjgren's syndrome, scleroderma, and other conditions including high blood pressure and high cholesterol (Horrobin DF 1981).

Sjgren's and Hormone Deficiencies

Restoring dehydroepiandrosterone ( DHEA) levels modulates immune and inflammatory responses. Women with primary Sjgren's show decreased serum concentration of DHEA and an increased cortisol/DHEA ratio (Valtysdottir ST et al 2001).

Sjgren's syndrome has also been linked to estrogen deficiencies in menopausal women (Hayashi Y et al 2004).
Thymus Extract

There is evidence that thymus extracts can improve the functioning and numbers of T cells and stimulate conversion of immature T6 cells (thymocytes) into non-dedicated T3 cells (Kouttab NM et al 1989; Wilson JL 1999). Thymominetic drugs, such as as levamisole and isoprinosine, stimulate the thymus and may be beneficial to T cell development (Hadden JW et al 1989).

Digestive Support

The amino acid L-glutamine heals the intestinal lining and improves its mucosal structure (Klimberg VS et al 1990). Beneficial intestinal bacteria, such as Lactobacillus acidophilus and Bifidobacterium bifidus, and fructooligosaccharides, a form of sugar that can enhance beneficial bacteria, provide gastrointestinal tract support by increasing the gut population of healthy microflora. Leaky gut can be the cause of the auto-immmune problem.

Goldenseal (H. canadensis) can help compensate for lower levels of antibacterial enzymesin the saliva. Swish with 30 drops goldenseal dissolved in 2 oz warm water.

Life Extension Foundation Recommendations

Life Extension's comprehensive Sjgren's recommendations include:
EPA and DHA: 700 mg EPA and 500 mg DHA twice daily with food.
GLA: 285 mg one or two times daily with food.
Life Flora: An intestinal bacteria to assist with digestion
Thymic Immune Factors. Follow directions on label.
L-glutamine: 500 mg daily.
DHEA: Blood testing is recommended before DHEA therapy begins to establish a baseline; then a starting dose of 15 mg to 75 mg may be recommended. Retesting is recommended three to six weeks afterward to ensure youthful levels.
Goldenseal (H. canadensis)

Sjgren's Syndrome Safety Caveats

An aggressive program of dietary supplementation should not be launched without the supervision of a qualified physician. Several of the nutrients suggested in this protocol may have adverse effects. These include:

DHEA
Do not take DHEA if you could be pregnant, are breastfeeding, or could have prostate, breast, uterine, or ovarian cancer.
DHEA can cause androgenic effects in woman such as acne, deepening of the voice, facial hair growth and hair loss.

EPA/DHA
Consult your doctor before taking EPA/DHA if you take warfarin (Coumadin). Taking EPA/DHA with warfarin may increase the risk of bleeding.
Discontinue using EPA/DHA 2 weeks before any surgical procedure.

GLA
Consult your doctor before taking GLA if you take warfarin (Coumadin). Taking GLA with warfarin may increase the risk of bleeding.
Discontinue using GLA 2 weeks before any surgical procedure.
GLA can cause gastrointestinal symptoms such as nausea and diarrhea.

Goldenseal
When taken for an extended period of time, goldenseal may cause digestive problems, constipation, nervous excitement, hallucinations, and delirium.
Do not take goldenseal for more than 3 weeks in a row. Wait at least 2 weeks before resuming use of goldenseal.
 
Merry;bt6669 said:
Him merylg.

Your health problems are really complicated. A nightmare is right. I'm sorry.

The exhibit of the history of world maps and picnic in the botanic gardens both sound enticing. But I guess that, despite the fun you had, this was all too much in one day.

Please take care.
Hi Merry,
Thanks for your kind thoughts. It was one of our first sunny days in Sydney after about 2 months of rain. Sydneysiders have been going troppo being confined to their homes. Anyway we went out with a small group of people, so it was good to "try being social"...and test my limits...and yeah...I am really sick.
 
L'engle;bt6670 said:
Yes, you are among friends here, Meryl!

:hug::hug::hug:

Sorry that you had such a rough reaction to going out and that the past year has been so difficult. thanks for sharing here, writing it out helps and it helps others to be able to read what someone else is experiencing.

Take care.
Thanks L'engle :hug::hug::hug: right back at ya! Well...proved I am sun-sensitive :Sign giggle::oops:
 
Hi rydra,
Thanks for your ongoing support & interest. Thanks for the info on Sjogren's Syndrome. My optometrist said there are three layers to the tear film & that I am missing the lipid layer. My opthalmologist would only say that I have "Dry Eye".....and that I have it because I am "susceptible".

Both recommended taking a source of Omega 3 like Fish Oil.
Optometrist said 3000mg/day.
As well of course, I need to use lubricating drops & I am using Viscotears at an alarming rate. Could not tolerate Lacrilube (paraffin based) for night-time use.

I asked my Endocrinologist if she would test me for Sjogren's, Lupus etc.
On 21st Nov 2011 my tests came back Negative. It mystifies me, as my symptoms are so much like Lupus & Sjogren's Syndrome.
I suppose NEGATIVE tests don't exclude these conditions.

"No antinuclear antibodies detected"
"Antibodies to SS-A(Ro 60), Ro-52, SS-B(La), RNP, Sm, Scl-70, Jo-1, proliferating cell nuclear antigen (PCNA), PM-Scl, Ribosomal P, and centromere NOT DETECTED"

From my reading, the lipid layer of the tear film is made by the Meibomian glands in the eye-lid & this is affected by low androgens.
 
I am sorry to hear meryl - so much of what you say is very familiar - we have little testing here but spinal etc problems are termed reactive arthritis (only !) but from what I'd like to know. Fairly certain it all originated in the Gut. Hope you find something to ease very soon - my own dry eyes did pass but no idea how or why except on a range of supplements at the time.
 
Nup, I'm not your friend Mez ;) but I still read your blog, haha.

Sorry that you've been feeling horrid. Much, much love to you :hug::hug::hug:
 
Enid;bt6678 said:
I am sorry to hear meryl - so much of what you say is very familiar - we have little testing here but spinal etc problems are termed reactive arthritis (only !) but from what I'd like to know. Fairly certain it all originated in the Gut. Hope you find something to ease very soon - my own dry eyes did pass but no idea how or why except on a range of supplements at the time.
Thanks Enid!:victory:
 
Mary Poppins;bt6683 said:
Nup, I'm not your friend Mez ;) but I still read your blog, haha.

Sorry that you've been feeling horrid. Much, much love to you :hug::hug::hug:
:cool: Thanks Mary Poppins! :Sign giggle::D:hug::hug:;)
 
taniaaust1;bt6695 said:
just seen this blog post and sending **hugs**

Glad to hear you got out, :) I hope the day was well worth it
Hi tania,
Thanks for the **hugs**. I did enjoy getting out, but I was unsteady on my feet & felt like I could hardly hold my body up. Could not walk far & feared being left alone...no confidence in my own body. Weird as this is not the usual me...even a year ago I was not this bad...sigh...
 

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