Revisiting some arachnoiditis statistics...

Living with arachnoiditis has been interesting. While I would prefer to not have to deal with this I obviously have no choice (there is no cure). Learning or should I say re-learning your body's limits can be an arduous task at times, even leading to developing other symptoms such as bursitis or tendonitis or worse cauda equina syndrome.

While most days are decent thanks to the meds there are still some symptoms that the patient will experience. Obviously to remove all the pain would require rather heavy doses of opioids, and while you might be pain free you would spend most of your time sleeping or to tired to do anything.

Below are some of the symptoms that arachnoiditis is known to cause and the percentage of the patients they generally effect. There is no telling which ones will effect individual patients so each day can be a crap shoot. They do make some interesting notes of a correlation between arachnoiditis and certain auto-immune disorders, especially of the thyroid. My family has a history of thyroid problems and while I have not been diagnosed as having one I do keep an eye on it because in addition to the family history I have also under gone a myleogram.

I have provided the link to the information below. If you follow the link they do provide more information then I have quoted.

COFWA

In 1999, a global postal survey of people with arachnoiditis showed the following results:


1. Pain (100%)
2. Numbness/tingling (86%)
3. Sleep disturbance (84%)
4. Weakness (82%)
5. Muscle cramps/twitches/spasms (81%)
6. Stiffness (79%)
7. Fatigue (76%)
8. Joint pains (72%)
9. Balance difficulties (70%)
10. Loss of mobility (68%)



Other common symptoms seen in the typical case:

1. Bladder/bowel/sexual dysfunction(68%)
2. Increased sweating (63%);
3. Difficulty thinking clearly/Depression (63% /62%);
4. Heat intolerance(58%);
5. Dry eyes/mouth(58%) and
6. Weight gain (50%).



Heartburn/indigestion is also a common problem; often this is related to use of NSAIDs (anti-inflammatory drugs). Difficulty in swallowing may be related to this or may arise (less commonly) due to inco-ordination of the gullet muscles.

Headaches are also a common feature. Many people seem to develop skin rashes, for unclear reasons. (some may be related to medication such as anticonvulsants).

Other less common problems experienced include: Tinnitus (ringing in the ears), dental problems (tooth decay may be worsened by dry mouth due to loss of the protective power of saliva), abnormalities in the menstrual cycle, eyesight problems (difficulty in focussing may be due to medication).

The pain tends to be intractable and resistant to treatment, being predominantly neurogenic in origin. This causes persistent burning pain and intermittent stabbing or electric shock type pains. Burning in the feet is common and may be accompanied by a sensation of walking on broken glass.

There may also be a component of central pain, which is well known to be difficult to treat. This involves various bizarre sensations, such as pain felt on light touch or a change in temperature (allodynia) or pain felt in a different part of the body to the one being touched. People also experience sensations such as water running down the leg, or insect bites.

One doctor has likened the pain of AA to that experienced in cancer, but without the relief of death. Indeed, some sufferers become suicidal due to the unrelenting pain and the neurological deficits they experience.

There are a range of systemic symptoms which constitute a debilitating condition that severely impairs the sufferers' quality of life.

AA is incurable and may be progressive in some cases. Usually people tend to ‘plateau out’ at a certain level of pain/loss of function, but in a minority, a relatively trivial event such as a slight fall or car accident, can set off a rapid decline.

Note: in the survey, a number of respondents had a diagnosis of an autoimmune disorder such as Lupus, Sjogren’s, Rheumatoid arthritis. There appears to be a possible link between AA and autoimmune type problems. Out of 317 survey respondents, 27 had thyroid disorders, all except one having previously undergone myelography. As myelogram dyes contain iodine, there may be a significant link between the myelogram and subsequent thyroid disease; this is currently being investigated. There are also a number of arachnoiditis patients who have also been diagnosed with Multiple Sclerosis, as well as several more who have undergone investigation for MS. Those who have a diagnosis of fibromyalgia in addition to arachnoiditis are probably suffering from the condition as a secondary feature of the underlying arachnoiditis; fibromyalgic type symptoms of diffuse muscle tenderness and fatigue are common in arachnoiditis patients.