[Heather66]

Hi there. Still trying to figure this stuff out. My daughter is no longer sleeping..she used to sleep if she took to gravol. Now she is wandering around at night saying that she can't sleep. Is this part of the RSD? At the moment she is off her cructhes and walking. She says her leg feels weak and weird..pain is not to bad. I hope this lasts..she has ridden her horse once on Sunday and has track at school tomorrow. I am not sure if she should participate or not.

Thanks to everyone for all your advice and help.
Heather

[InHisHands]

YES, it does! Here is a great site on the topic:
http://www.rsdhope.org/Showpage.asp?...3&PGCT_ID=3003

I also copied/ quoted some info here for you:

FOUR Main Symptoms/Criteria

There are FOUR Main Symptoms/Criteria for a diagnosis of RSDS:

1. Constant chronic burning pain.
2. Inflammation
3. Spasms-in blood vessels and muscles of the extremities
4. Insomnia/Emotional Disturbance

Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time.

The CONSTANT PAIN is described as burning pain as if a red hot poker were inserted into the affected area, also throbbing, aching stabbing, sharp, tingling, and/or crushing in the affected area (this is not always the site of the trauma). The affected area is usually hot or cold to the touch. The pain will be more severe than expected for the type of injury sustained.

Allodynia is usually present as well (extreme sensitivity to touch). Something as simple as a slight touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient. Pain can also be increased by sounds and vibrations, especially sharp sudden sounds and deep vibrations.

This makes it especially difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of pleasure. If the patient has not been properly diagnosed yet and these sensations not yet been properly explained, these symptoms can cause extreme duress and confusion to all involved.

The INFLAMMATION is not always present. It can take various forms, the skin may appear mottled, become easily bruised, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well.

The SPASMS result in a feeling of coldness in the affected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.

The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. RSD affects the limbic system of the brain. This causes many problems that might not initially be linked to a disease like RSD. Chief among them are Depression, Insomnia and short-term memory problems.

RSD CAUSES Depression, NOT the other way around. For more on Depression see the Menu.

RSD causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patients pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep which makes the pain worse and so the cycle continues.

Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like, what someone told you an hour ago, what you had for lunch yesterday, whether you took your pils this morning, what you were just talking about etc. You are NOT losing your mind. Loss of short-term memory is part and parcel of RSD.

Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patients ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues.

Do these symptoms sound familiar to you ? Do you also sometimes have an increase in your pain when your stress level is higher ? Or the noise level is higher ? Do you want to crawl into a hole by yourself and pull it in after you ? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain ?

Do you sometimes have trouble finding a certain word? Do you sometimes completely lose track of what you are saying ? If these symptoms sound familiar, know this; you are NOT crazy and you are NOT losing your mind. You are also not alone, not anymore.

(from RSD Hope site)

RSD Symptoms

There are 4 main symptoms in RSD (CRPS and Causaligia), but there are many more effects that is has on the body.

The 4 main symptoms are:

1. Pain.

This is the major symptom of RSD, which is extremely intense, often leading to a lack of sleep.

Described usually as severe, constant and burning in nature; like the affected area was on fire or in a pot of boiling water. You can also suffer from throbbing, aching, stabbing, crushing, sharp or tingling pain in the affected areas. The painful areas are not limited to the original accident or trauma site. The pain is more severe than what is expected for the type of injury sustained.

Allodynia usually accompanies this pain. This is an extreme sensitivity to a stimulus that would not normally cause pain. A slight touch, clothing, even a breeze can cause extreme pain. Hyperpathia and Hyperesthesia can also be present (Increased sensitivity to painful stimulus including pressure and touch which can continue after the stimulus is removed). Pain can be caused by vibrations and even loud noises and sound.

2. Inflammation.

Inflammation is present in MOST cases of RSD and can be present in many forms. These include swelling (edema), color changes (mottled skin, purple, blue, red or pale discolorations), skin rashes, bleeding in the skin, bruising easily, swelling in and around the joints and freezing of the joints.

Inflammation is not always present.

3. Spasms.

The blood vessels of the skin and muscles spasm causing a feeling of coldness. This can also result in tremors, muscle weakness or fatigue, movement disorders, weakness and clumsiness of the extremities and the tendency to fall.

4. Insomnia and Emotional Disturbances

RSD affects the limbic system, the part of the brain in which the sympathetic nerve fibers carrying the pain and other impulses terminates. This is positioned between the brain stem (at the base of the neck) and the brain's cerebral hemispheres.

Disturbance of the limbic system can causes depression, agitation, irritability, insomnia, short term memory loss and lack of judgment or concentration.

SOME Other Symptoms of RSD:

Movement Disorders - Difficulty in beginning movement of the affected area or the inability to move the area. Eventual development of dystrophy and/or atrophy.

Skin Changes - Skin may change color. May be mottled. Can become shiny, dry and tight. Rashes and sores can occur (neurodermatitis). The skin can become thin and fragile or may become quite thick, developing elephantiasis.

Sweating - Increased sweating in affected areas or lack of sweat especially in later stages.

General Weakness - Body Fatigue.

Increased Tone< - Muscle and skin tightening.

Increased Reflexes - Tremors of affected extremities and muscle spasms.

Hair/Nails - These may grow at an increased rate in early stages and/or then slow or stop growing in affected areas. The hair can also change in color and thickness. Nails can become grooved, cracked, discolored and brittle.

Eye Sight - Visual disturbances can occur including blurring, difficulty focusing and dizziness in the form of vertigo (either the body or objects moving around).

Hearing - Tinnitus (buzzing or ringing in the ears).

Joints - Decreased ROM (range of movement), Tenderness and swelling.

Miscellaneous - loss of libido, relationship problems, anxiety and panic disorders. Immune system disturbances. Inability to control body temperature and fever, especially in the late stages of CRPS.

(see: http://www.usarsd.org/page_symptoms.php)

[unrouley1]

as a rule, if i don't take a sleeping pill (amitriptyline) i am up all night. it's very strange because i have always been a sleeper. i can fall asleep (and have plenty of times) at a rock concert!!!!!!

[qtkatie013]

i also have difficulty sleeping at night... its terrible, especially now since i'm off the lyrica..(which made me atleast somewhat sleepy) if i dont take a tylenol pm every night i will be up for hours and will wake up frequently throughout the night

[theoneRogue420]

Insomnia is one of the biggest problems I have... lack of sleep causes me to be less able to handle all other aspects of rsd.

I have been prescribed several sleep aids... none of which seem to work, lol. I took an Ambien (the most current experiment) at 10 p.m. tonight. I was in bed by 11... and am back up again at 1 a.m.!

I haven't slept for more than four hours at a stretch (and usually more like two) in several years.

[JOAN_M]

i've had to take tranxene for years ... and that was a great site you put up with all that info. i have read at that site for years. joan

[InHisHands]

Originally Posted by unrouley1

as a rule, if i don't take a sleeping pill (amitriptyline) i am up all night. it's very strange because i have always been a sleeper. i can fall asleep (and have plenty of times) at a rock concert!!!!!!

Ang, Um... are you saying that you take it some nights and not others?! I just wanted to clarify, because, as it is an antidepressant you shouldn't be going on it, off it, on it, off it, and so on for any period of time.

Amitriptyline has to be taken on a regular basis... I know about this specific one because I am on it. One night I was unable to take it (flu) and I had a horrible night of withdrawal- really jittery, heart racing, etc...

What dose are you at? Over a period of time my doctor has worked me up on a higher dose, and it was helping me for a short period of time. I am hoping that with an increased dose it will help me.

Depression is associated with an increased risk of suicidal thoughts, self-harm, and suicide. You should be aware that this medicine may not start to make you feel better for at least two to four weeks. However, it is important that you keep taking it in order for it to work properly and for you to feel better. If you feel your depression has got worse, or if you have any distressing thoughts or feelings, particularly about suicide or harming yourself in these first few weeks, or indeed at any point during treatment or after stopping treatment, then it is very important to talk to your doctor.

(I know that this is mentioning it in the use of depression, but it is a general rule that antidepressants should not be taken "as needed" and you have to regularly take them)

You should not suddenly stop taking this medicine, as this can cause withdrawal symptoms such as nausea, vomiting, loss of appetite, headache, giddiness, chills, insomnia, restlessness or anxiety. Withdrawal symptoms are temporary and are not due to addiction or dependence on the medicine. They can usually be avoided by stopping the medicine gradually, usually over a period of weeks or months, depending on your individual situation. Follow the instructions given by your doctor when it is time to stop treatment with this medicine.

(from: http://www.netdoctor.co.uk/medicines/100000107.html)

Heather, amitriptyline is an option for your daughter, as it is often used for youngsters (my dr thought it was a safe option for me, and I am nearly 17). It is an antidepressant and used for the side effect of sleep.

The good thing about amitriptyline is that it has pain relieving qualities.

It is used for insomnia:

For ongoing treatment of primary insomnia, the effective dosage will usually be about 10-25mg per day, taken at bedtime. This drug should be effective for treating your insomnia within a couple days of use, if it will help at all. Some people with insomnia find that this medication either does not work, or significantly affects them the next day.

(please see: http://www.toddlertime.com/med/elavil.htm)

How is she doing today? I hope well. Did you get the PM I sent you?

[bassman]

Originally Posted by InHisHands

Ang, Um... are you saying that you take it some nights and not others?! I just wanted to clarify, because, as it is an antidepressant you shouldn't be going on it, off it, on it, off it, and so on for any period of time.

Vanessa, Thanks for this. I has suspected this, since people very close to me have been treated for serious depression. But I had a doctor (who I generally trust a lot, esp. regarding medications) give me Amitriptyline to use as a sleeping aid. He said to use it "as needed." Since it didn't really do anything except make me groggy the next day, I quit and switch to Ambien, which works a little better. Still takes a while to fall asleep, but at least no after-effects.

I guess this is partly why we are here --to share experiences and information when we can.

Mike

[sue k]

Hi Heather,

Sleeping has always been a problem for me ever since the RSD. I would go for days without sleep. I tried ambien, valium, but nothing worked. I went to the Dr. and she put me on Xanax. I have been sleeping well ever since. It also really helped with the awful panic attacks that I have.

Sue

[Auberon]

Yep,
it certainly does interfere with sleep. I think I sort of collapse from exhaustion for about 4 hours if I'm really lucky - even with sleeping pills.
At best I get one night of six hours a month but it is not quality sleep.

Oh Boy does this effect how you deal with the RSD. The other problem is that just about every med we have to take (I know we have no choice) relax the soft palate and you snore / suffer apneoa so the quality of the sleep is poor.

On the subject of TCA's (tricyclic antidepressants) absolutely - constant use.
Some docs prescribe them to stop the tremors but their effect is pretty poor -but it works for some fortunate folk. They only use low doses too for this.

I don't need to back up the great info provided so far about the dangers of p.r.n. (as required) use of these meds.

Cheers
Auberon