Not What I Was Expecting

So, I’m here. Arrived. Gave details. Got poked. My private health insurance has me in a 4-bed room (no singles available). I don’t think I’m going to like this…

Have had a very up and down day…

Procedurally, I started with 5mls ketamine per hour (for those who have any idea what I’m talking about) and my vitals (blood pressure, temperature and heart rate) being taken every half an hour. Four hours later, ketamine was increased to 10 mls, with my vitals being taken every half hour for two hours, decreasing to once every hour.

Physically, I started feeling heavy and tired after about 2 hours. I went to sleep after lunch. While I was sleeping, the nurses kept taking all the vitals and other things happened around me; but it was like an old film that had been spliced and put together again in the wrong order: I had no idea what was happening, what was real, what was a dream. And, in my head, I was screaming I don’t like this!

So, with what felt like a lot of effort, I sat up in bed and looked around for a bit. I am very glad that I brought my travel clock with me…I looked at the clock at 2:52pm, looked over at the window and started to think: what a nice day out there…very bright light…oh, my eyes hurt…hmm, does anything else hurt?…my head has a dull ache…my face feels like it did when I had the filler in Bali…<blank space in my head>….should I tell a nurse?…I would have to reach over and get the button thing…is it bad?…check eyes…<more blank space>…what else…head…lips…can the other ladies see my fat lips…I have to move…stop staring at the other ladies…this doesn’t feel good…does it feel bad?….<blank space>…feel very strange…is this tripping?…people drive cars like this…how do people drive cars like this…I don’t like this feeling… and then it is 2:57pm. I’m trying my best to explain how it felt for you – it was very intense and thoughts just kept being thrown at me and I had to acknowledge every single one (sort of like an endless tennis machine shooting tennis balls at you) – does that make sense to you?

So, I don’t like the feeling and I start to cry – not huge giant sobs or anything, just face leakage again… – for 3 hours (the nurse said that can happen).

But I guess my body had gotten used to it now because I’m feeling quite normal, just slower than my normal. So I figured I’d write a post and let you into my hospital room at 11pm -  All women. All over 70. All asleep…except me!

My dosage will be increased again at 3:30am and I’ll be back to the half hourly vitals check so I guess I’ll be awake most of the night.

Hope this gets better…

P.S. The internet situation is pretty dire here so you can’t even have any pictures!

It’s Delightful, It’s Delicious, It’s D-Ribose

I started taking D-Ribose 2 weeks ago. (I wasn’t able to find it anywhere near me so I buy it online from iHerb.com.) My capsules have 4 250mg of D-Ribose so I thought I should be feeling fabulous.

In a study by Dr Jacob Teitelbaum, D-Ribose treatment led to improvements in all categories:

• 61.3-percent increase in energy
• 37-percent increase in overall well-being
• 29.3-percent improvement in sleep
• 30-percent improvement in mental clarity
• 15.6-percent decrease in pain

Improvement began in the first week of treatment, and continued to increase at the end of the three weeks of treatment.

Additionally, in her book, Food That Helps Win the Battle Against Fibromyalgia, naturopathic doctor Deirdre Rawlings states that d-ribose supplements can help FM by improving energy transfer to your muscles.

So where was all my great improvement? I had written a post previously so I knew that I only needed 5mg three times a day (and I was taking heaps more!).

But guess what? I messed up (I’m blaming fibro fog, and it’s fixed now) – it was supposed to read 5 grams three times a day!

So, starting today, I am taking one capsule three times a day – it is a bit short of the 5 grams (just 750mg) so I’m still looking forward to some positive effects.

D-ribose is a type of simple sugar (a 5-carbon sugar; unlike 6-carbon glucose sugar)  that plays a role in energy metabolism and specifically in the formation of ATP, or adenosine triphosphate, the fuel that every cell in your body uses for its energy production. In fact, the ATP energy molecule is made of ribose. Ribose is found in limited amounts in meat and vegetables, though your body usually manufactures enough ribose from glucose to meet its daily needs. However, researchers believe that people with FM may have a deficit in ATP production, which accounts for the lack of energy and feelings of fatigue.

No side effects are associated with the use of ribose supplements, according to Tufts Medical Center; however, no long-term safety studies have yet been conducted. The only significant (bad) side effect seen, so far, is feeling hyper/over-energised (oh! wouldn’t that be nice!) in which case you should lower the dose or take it with food.

As with any nutritional supplement, inform your doctor if you plan to use D-Ribose.

I’ll let you know when (I’m being positive) I start feeling fantastic!

Abracadabra! And the Pain has Disappeared?

 

Today I saw my pain management specialist (from Rehab), in hopes that we’d be moving forward with the lignocaine and ketamine infusion. (Remember?)

Much disappointment followed as he wants to wait until I see the surgeon about my liver and gall bladder (just in case he says something like: To the hospital STAT!). It is totally understandable (his reasoning, I mean) but I am SO ready to try this treatment, especially after looking at some of the research done.

In a study completed in Sweden, pain intensity, muscle strength, static muscle endurance, pressure pain threshold, and pain tolerance at tender points and control points were assessed in 31 patients with FM, before and after intravenous administration of morphine, lignocaine, and ketamine.

The three different studies were double-blind and placebo-controlled:

• The morphine test did not show any significant changes.
• The lignocaine test showed a pain decrease during and after the infusion!
• The ketamine test showed a significant reduction in pain intensity during the test period. Tenderness at tender points decreased and endurance increased significantly, while muscle strength remained unchanged.

A-ha! This is what I want! And I want it NOW!

So what is this treatment?

What is the Purpose of the lignocaine infusion?

Nerve pain can occur due to many causes. This can cause burning; shooting pain that is difficult to treat. The circulating local anaesthetic reduces the activity of the damaged nerves and may reduce the pain. Here’s hoping!

What is a Lignocaine infusion?

The treatment involves infusing the local anaesthetic lignocaine into a vein that is usually inserted in the back of the hand. (Uh-oh! Really don’t like that part!)

How is the Infusion Performed?

Multiday (5-7 days) infusions are usually performed in a monitored bed in the high dependency unit.  The infusion is attached to the needle using a piece of tubing attached to a pump.

How long does the Block Take?

The multiday lignocaine infusion for neuropathic pain or headaches is usually run for 7 days.

Will the injection hurt?

The only discomfort will be the small needle being inserted in the hand.

What is ketamine?

Ketamine is used as an anaesthetic agent in high doses both in human and veterinary medicine; it is also known to be abused as a recreational drug. In smaller doses, it can be used to manage acute and chronic pain especially in those where the pain is so severe it is not controlled by other drugs.

How will ketamine help?

• ‘Pain-Relief: In the chronic pain population, ketamine is a useful drug, although it is not effective in every patient. The pain relief that can occur with a “short ketamine infusion” often “breaks the cycle”, and often lasts considerably longer than the infusion.  In the case of nerve pain or complex regional pain syndromes (CRPS), ketamine has been reported to produce remissions in the pain and other symptoms lasting many months.
• Other: Ketamine can reduce withdrawal symptoms and make it easier to cope with reduced doses of other analgesics. There is emerging evidence that ketamine has an antidepressant action and that it can reduce compulsive/obsessive behaviours.

Double bonus on this one – hopefully, it will short-circuit my brain into causing me less pain, while helping me withdraw from codeine (AND while I’m sedated, I figure it might help to quit smoking, too!)

How is ketamine administered?

The ketamine is usually given either by an intravenous (we’re going this one!) or a subcutaneous infusion.

What happens when the infusion begins?

As Ketamine can cause side-effects, you will be given a premedication of clonidine and an anti-nausea medicine. The infusion will be started at a low dose and gradually increased at intervals depending upon your progress and how well you tolerate the drug until the target dose is reached.  A nurse will be checking your breathing, heart rate and blood pressure regularly. The nurse will also be monitoring Pain scores and Sedation (sleepiness).

So, next week, I get to see the liver/gall bladder guy then, the first available appointment with the Pain Management Specialist is November 7^th.

Hello? I’m ready now – I even bought my hospital pajamas already!

*** For some interesting statistics that I discovered while researching, click here.

Related articles

• Looking for a Silver Lining… (fibromodem.wordpress.com)
• Yale scientists explain how ketamine vanquishes depression within hours (news.yale.edu)

 

Look into My Eyes…

Hypnosis may sound like voodoo, but it’s not. Hypnotherapy is a legitimate treatment method one that many patients with FM swear by. Hypnosis is now emerging as one of the best alternative treatments available for FM pain. The use of hypnosis has been proven to reduce pain symptoms and it has become a doctor-recommended treatment. If you are suffering from pain, you may want to consider hypnosis as a treatment option. While hypnosis may not be a cure, it could provide a simple yet effective means to reduce pain for many people.

What is Hypnosis?
Hypnosis is a non-invasive technique that encourages you to achieve heightened levels of focus and sensation. People who practice hypnosis believe that there are two main components to the mind: the conscious mind and the unconscious mind. Through relaxation and suggestion, you are able to access your subconscious mind and stop behaviours or thoughts that may be contributing to pain or other unpleasant symptoms.

Contrary to popular belief, though, people who are in a state of hypnosis are not unaware of their actions and will not do anything that they have a serious moral or ethical objection to. In fact, you do have control over your actions as well as what you say while you are hypnotized. Moreover, you have the ability to remember what transpired while you were hypnotized. However, in some cases, your subconscious mind may choose to ‘forget’ just what happened.

In 1991, an article appeared in The Journal of Rheumatology about a study consisting of 40 patients who had not seen results from other forms of treatment for their FM. They were randomly selected to receive either hypnotherapy or physical therapy. They received either form of therapy for 12 weeks. All participants were assessed by the researchers at a 12 and 24 week follow-up.

Before the start of the study, all patients reported feeling discomfort both mentally and physically.

During both the 12-week and 24-week assessments, the participants in the hypnotherapy group reported a reduction in pain and fatigue and they also reported better sleep. Their assessments at the 12 and 24-week follow-up were compared to the baseline reporting of the HSCL.

At the follow-up, those who received hypnotherapy reported a significant decrease in feelings of discomfort. However, those who received physical therapy did not report any significant decrease.

The researchers in this study concluded that hypnotherapy is a useful tool to help relieve pain and other symptoms associated with FM.

The July 2008 issue of the European Journal of Pain details a study which examined hypnosis and pain management in patients suffering from FM. Using fMRI (functional magnetic resonance imaging), the researchers compared two groups of sufferers. One group was given suggestions for pain management without hypnotic induction, while the other group received the same suggestions after hypnotic induction.

Researchers then took brain scans of each group, and asked each group about their levels of pain. Both groups reported less pain after suggestion, but those who had been hypnotized reported more feelings of personal control of their pain – they felt more empowered as far as being able to manage their pain levels. The brain scans in the hypnotized group showed greater activity compared to the non-hypnotized group.

Based on this, the researchers concluded that hypnosis increases the effectiveness of FM pain management.

Types of Hypnosis
There are two main types of hypnosis techniques:

1. Hypnosis Performed by a Clinical Hypnotist: This type of hypnosis is performed in-office by a licensed professional. The hypnotist will explain what hypnosis is and how it works to reduce pain. He or she will then lead you into hypnosis through a series of relaxation exercises. Once you are in a hypnotic state, the hypnotist will make suggestions as to how you can change your thoughts or behaviour in order to minimize your symptoms.
2.  Self-Hypnosis: Self-hypnosis is a type of hypnosis that you can do yourself in the privacy of your own home. You can learn self-hypnosis either from a clinical hypnotist or from one of a number of books available on the subject. Self-hypnosis programs and hypnotherapy courses are also widely available. Self-hypnosis techniques can be indispensable for FM sufferers. Self-hypnosis is usually used as a form of relaxation or meditation.

Stages of Hypnosis
There are three main stages of hypnosis. Your hypnotist will lead you into a certain stage of hypnosis, depending upon the illness or symptom you wish to treat.

First Stage: The first stage of hypnosis is often referred to as a superficial trance. This is the lightest stage of hypnosis, during which you are aware of all of your surroundings. This type of trance is commonly used to help correct addictive behaviours such as smoking. During a superficial trance, you will accept suggestions but may not act upon them afterwards.

Second Stage: The second stage, the alpha state, is a deeper level of hypnosis. You may notice that your breathing begins to slow down, as will your heart rate and blood pressure. It is this stage of hypnosis that is used to control pain.

Third Stage: The third stage of hypnosis is the deepest. Psychiatrists use this stage to access forgotten emotions, memories, and events. It is often used to help those who have undergone severe psychological trauma.

How Does Hypnosis Work?
Researchers are not completely sure how hypnosis therapy works or why it works so well in fibromyalgia patients. A recent study performed at the University of Iowa looked to explain what actually happens to the brain during hypnosis. Brain scans were taken of chronic pain sufferers in hypnotic trances and analysed for activity changes. Researchers found that people under hypnosis had reduced activity in pain network areas of the brain. In particular, the area of the brain responsible for ‘feeling’ pain had significantly reduced activity levels. This suggests that hypnosis treatment works because it actually has a physical effect on the brain.

Effects of Hypnosis on Fibromyalgia Sufferers
Many FM sufferers attribute reduction in their symptoms to the power of hypnosis. As stress may have been a major contributor to the onset of FM, it is vital to introduce a means for the FM patient to manage and reduce their stress levels. Hypnosis has proven to be highly effective in this area. Self-hypnosis is a practice that when used regularly reduces stress and encourages relaxation and well-being.

FM sufferers often use hypnosis as a way to limit their pain symptoms and increase their energy and comfort level. A study conducted by the NIH showed that fibromyalgia sufferers undergoing hypnosis reported 80% fewer pain symptoms than those who received no hypnosis treatment. Other benefits of hypnosis include:

• decreased muscle pain
• decreased morning fatigue
• fewer sleep difficulties
• increased relaxation

So, if other methods of treatment have failed, one might consider this alternative therapy.  The idea is that with hypnosis, FM sufferers’ quality of life can be bettered.  Many people, including me, have a pre-conceived notion about hypnosis – may it be the idea of ‘letting someone into your head’ or just that it won’t work.  The fact is, no one is actually taking control of your conscious state, the therapist is actually empowering you to take control!
It can’t hurt and you may gain some freedom from your pain!   To me, that’s a plus!

Things to Remember
Before engaging in any type of hypnosis there are a few things to keep in mind:

• Be sure to find a licensed clinical hypnotist. There are many unlicensed hypnotists operating throughout the United States. Clinical hypnotists have specific training in both medicine and psychology.
• Hypnosis doesn’t work for everyone. Up to 10% of the population can’t be hypnotized.
• If you are suffering from a psychiatric condition or any type of psychosis, do not undergo hypnotism without first speaking with your health care professional.

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10 Reasons To Increase Fibromyalgia Awareness

1. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about fibromyalgia, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
2. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
3. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
4. Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
5. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
6. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
7. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
8. More support groups will be formed as a result of more people realising that they have fibromyalgia.
9. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Related articles

• Flagrant, Blatant, Brazen and Shameless Self – Promotion (fibromodem.wordpress.com)

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