When does the sleep disturbance go away?

[Guest guest]

Thank you for

this support group! I have learned a lot in the few weeks that I have

been lurking.

I have

Dermatomyositis (DM) (likely from childhood—just undiagnosed), Cutaneous

Lupus, Fibromyalgia (FMS), some trauma-induced osteoarthritis (lots and lots of

fractures and sprains over my entire life), Alpha-Delta Wave intrusion sleep

disorder which contributes to Sleep Apnea, asthma, allergies, drug-induced

diabetes and hypertension. Dermatomyositis is extremely rare with an

incidence of 5.5 in a million. My rheumatologist, who is my age—56,

has seen only one other case and that was in her student days in Britain.

I live near Toronto which the U.N.

calls the most cosmopolitan city in the world. I have access to every

kind of medical/alternative treatment modality that you can think of and am not

afraid to explore different possibilities to enhance my well-being and improve

my quality of life. That’s one of the reason that I joined this

support group.

From 5 years ago

when I could barely roll over in bed or pick up a newspaper to now, my

wonderful rheumatologist and I have worked as a team to find ways to overcome

the liabilities that come with having to live with chronic conditions.

The change is remarkable and welcome!

I have been Prednisone

free for 2 years. I lost 80 pounds as I tapered off it. The

diabetes went away and my blood pressure decreased substantially (although I

still have hypertension). Imuran didn’t work for me. I have

used Methotrexate with good success, but no longer need it. At this

juncture, I take 250 mg. of Hydrochloroquine phosphate every other day to

control the skin components of my first two conditions noted above. I

practice scrupulous skin hygiene, including applying 60-SPF sun block all year

round and sun avoidance, since I am extremely photosensitive. A sunburn

can put me in serious flare. My IBS is under control and “Fibro fog”

rarely happens to me anymore.

Because of the FMS,

my sleep hygiene is also disciplined. (I could write a book on relaxation

and meditation techniques and about things NOT to do when one is in bed!)

The lack of restorative sleep is a hallmark of FMS and it has become worse.

I began LDN in

liquid suspension on August 13. (My rheumatologist has prescribed it to

only one other patient with good success. My local pharmacy compounds it

for me and my husband’s work group health plan pays for it. I am

very fortunate in that regard.)

I appreciate the

Herzheimer phenomenon. (The feeling has returned to the site of a deep

muscle biopsy, for instance. It began as a “pain” and now is

almost at normal sensation.) One just has to practice patience! But

for how long?

Not being able

to sleep is very upsetting. The body cannot possible enjoy optimal health

if it cannot repair itself during restorative sleep—of which I am getting

none. I have worked up to 3 ml. and take it at about 21:30 hours. I

use no pharmaceutical agent to induce sleep. I suppose that Linden tea might be

classified as a sleep-inducer, though. (I am deathly allergic to the

chamomile family.) Occasionally, I take 1350 mg. of slow release

acetaminophen for muscle pain as I retire for the night. I have learned

that pain can and does intrude in my sleep. (Well, duh...!)

Has anyone had

this experience? What strategies did you employ to fall asleep and stay

asleep? I appreciate any and all responses.

Judith