Archive for the ‘Cognitive Limitations’ Category

Five Things to Know About Fibromyalgia

Posted by Kelli on July 21st, 2009

Five Things You Should Know About Fibromyalgia
by Amanda Rinkel
May 5th, 2009

International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day is next week on May 12th. I’m going to take a break from articles on internet wastes of time, movie reviews and news updates. Instead I’m going to take a moment to highlight these illnesses and the necessity for awareness.

Five Things You Should Know About Fibromyalgia

1. 3-8 million people in the United States have Fibromyalgia and up to 80% are women.

2. Fibromyalgia most commonly hits between the ages of 20-40 years old, at the “prime of life.”

3. It has been nick-named “the pain disease” because of the characteristic wide-spread, migrating body pain patients have. The pain has been described differently by each patient from dull aches to deep bone pain to burning, tearing, singeing, stabbing or shooting. The breadth of pain descriptions is what makes diagnosis difficult.

4. People with Fibromyalgia have cognitive difficulties, such as memory problems and attention issues, that has been nicknamed “Fibro fog” or “brain fog.”

5. Fibromyalgia is considered as functionally disabling as rheumatoid arthritis but is much less accepted and recognized by both the medical establishment, Social Security and the community at large.

To learn more check out www.fmsaware.org.

Soource: blog.su-spectator.com

Study of Sodium Oxybate in Patients With FMS

Posted by Kelli on June 15th, 2009

Jazz Pharmaceuticals to Present Data From First Phase III Study of Sodium Oxybate in Patients With Fibromyalgia

06/09/2009

PALO ALTO, Calif., June 9 — Jazz Pharmaceuticals, Inc. (Nasdaq: JAZZ) announced today that data from the company’s first Phase III clinical trial of sodium oxybate (JZP-6) for the treatment of fibromyalgia will be presented this week during the Associated Professional Sleep Societies (APSS) 2009 Annual Meeting in Seattle, Washington and also during the European League Against Rheumatism (EULAR) Congress in Copenhagen, Denmark.

Following are the details on each of these data presentations.

– At APSS on June 10, 2009, Dr. Todd Swick will be presenting a poster entitled “Impaired Sleep and Daytime Functioning at Baseline in Subjects with Fibromyalgia: a 14-week Randomized, Double-blind, Placebo-controlled Trial of Sodium Oxybate” in the 10:15 am-12:15 pm poster session.

– At APSS on June 11, 2009 at 9:00 am in Ballroom 6E, Dr. Swick will also deliver an oral presentation entitled “Sodium Oxybate Improves Pain, Fatigue, and Sleep in Fibromyalgia: Results from a 14-week Randomized, Double-blind, Placebo-controlled Study.”

– At EULAR on June 12, 2009, in Room C2 from 5:30-7:00 pm, Dr. I. Jon Russell will be presenting “Sodium Oxybate in the Treatment of Fibromyalgia” at a UCB-sponsored Symposium entitled: “Fibromyalgia: How Much More than Pain?” The symposium will be chaired by Dr. Ernest Choy and also features Dr. Gilles Lavigne and Dr. Michael Spaeth as speakers.

Jazz Pharmaceuticals has completed a second Phase III pivotal clinical trial of JZP-6 and expects to announce top-line results from that study in mid-2009. Assuming positive results in the second study, the company anticipates submitting a New Drug Application for sodium oxybate for the treatment of fibromyalgia to the U.S. Food and Drug Administration by the end of 2009.

About Sodium Oxybate

Sodium oxybate is the sodium salt form of gamma-hydroxybutyrate, an endogenous neurotransmitter and metabolite of GABA. While the precise mechanism of action is unknown, the effects may be mediated in part through interaction with GABA(B) and GHB receptors. Sodium oxybate is the active ingredient in XYREM(R), approved by the FDA for the treatment of excessive daytime sleepiness and cataplexy (the sudden loss of muscle tone) in adult patients with narcolepsy. The American Academy of Sleep Medicine recommends sodium oxybate as a standard of care for the U.S. Food and Drug Administration-approved indications. It is also approved by the European Medical Evaluation Agency for the treatment of narcolepsy with cataplexy in adult patients. Most commonly reported adverse drug reactions in narcolepsy patients are dizziness, nausea and headaches. Sodium oxybate has the potential to induce respiratory depression and neuropsychiatric events. Sodium oxybate has not been evaluated by regulators for the treatment of fibromyalgia and is not approved for this use.

About Fibromyalgia

Fibromyalgia, a chronic condition characterized by widespread pain, affects 0.5% – 5% of adults worldwide. Fibromyalgia is believed to be a central nervous system condition, resulting from neurological changes in how the brain perceives and responds to pain. In addition to pain, the main symptoms are fatigue, disturbed sleep and morning stiffness. The exact causes of fibromyalgia are unknown. It may be triggered by physical trauma, emotional stress, chronic pain or infection. Genetics, neurochemicals that affect pain modulation, neurohormones and sleep physiology abnormalities are thought to play a role. Research also has suggested a relationship between sleep and pain. Fibromyalgia patients experience a high prevalence of sleep problems, including a reduction in non-restorative or deep sleep.

About Jazz Pharmaceuticals, Inc.

Jazz Pharmaceuticals is a specialty pharmaceutical company that identifies, develops and commercializes innovative treatments for important, underserved markets in neurology and psychiatry. For further information please see http://www.JazzPharmaceuticals.com.

Jazz Pharmaceuticals “Safe Harbor” Statement under the Private Securities Litigation Reform Act of 1995

This press release contains forward-looking statements related to the development of Jazz Pharmaceuticals’ sodium oxybate (JZP-6) product candidate for the treatment of fibromyalgia, including the timing of results from the second Phase III pivotal clinical trial and the submission of a New Drug Application to the FDA. These forward-looking statements are based on the company’s current expectations and inherently involve significant risks and uncertainties. Jazz Pharmaceuticals’ actual results and the timing of events could differ materially from those anticipated in such forward-looking statements as a result of these risks and uncertainties, which include, without limitation, risks related to the outcomes of the company’s second Phase III clinical study of sodium oxybate for the treatment of fibromyalgia and the timing of the announcement of clinical results, and risks that a New Drug Application may not be submitted, or may be delayed, and that sodium oxybate for the treatment of fibromyalgia may not be approved for marketing by regulatory authorities. These and other risk factors are discussed under “Risk Factors” in the Quarterly Report on Form 10-Q for the quarter ended March 31, 2009 filed by Jazz Pharmaceuticals with the Securities and Exchange Commission on May 7, 2009. Jazz Pharmaceuticals undertakes no duty or obligation to update any forward-looking statements contained in this release as a result of new information, future events or changes in its expectations.

(C) 2009 Jazz Pharmaceuticals, Inc.
SOURCE Jazz Pharmaceuticals, Inc.
CONTACT: Willie Quinn, Executive Director, Corporate Development of Jazz Pharmaceuticals, Inc.,
+1-650-496-2800, investorinfo@jazzpharmaceuticals.com
Web Site: http://www.jazzpharmaceuticals.com

Brain Fog

Posted by Kelli on June 2nd, 2009

Brain Fog
By Kristy Bassett

Brain fog is possibly one of the most frustrating symptoms I have, not being able to think clearly can lead to major problems. It can not only be embarrassing not being able to think clearly, it can be dangerous.

The first thing to learn when you suffer brain fog is to never participate in any activities where you could be a danger to yourself or to others while it’s there. For me this has meant avoiding cooking and driving when the brain fog is a problem, this may be unavoidable at times, but where possible stick to this rule!

So what can be done? Unfortunately there are no miracle cures to lift the fog, but it can be managed. It’s worth investigating what is causing the fog in the first place.
Possible causes:

  • poor sleep
  • autoimmune disorders
  • hormonal imbalance
  • chronic fatigue/fibromyalgia
  • pain medication or the pain itself
  • allergies
  • iron deficiency and other nutritional deficiencies
  • blood sugar drops
  • dehydration

    • If you are able to pinpoint the cause, it may be possible to treat it simply. For others, the cause may not yet be known, or if it is known there may not be any more that can be done about it.


    Managing Brain Fog:

  • Try to avoid activities that are beyond your capacity, if possible rest is advisable
  • Caffeine: If there is no choice but to be able to function, it is the one time where stimulants such as tea or coffee may be a good idea to get through. This shouldn’t be a routine, but can be a crutch if necessary. Remember that once the caffeine has worn off you will likely feel worse than you did before the caffeine consumption. Warning: regular caffeine consumption is not recommended for those with fatigue.
  • Supplements: MAY help if there is a deficiency to improve energy: the most beneficial to energy are B vitamins, iron and coq10.
  • Manage your pain: (if this is the reason) as well as you can
  • Make notes as reminders: if you have to remember a lot of things in a day, it may be handy to write a list on a notepad to carry around with you, so things can be ticked off and not missed
  • Set reminders: this can be in a calendar, or diary, or through a computer program, whatever is going to be something you check often. Reminders can be for events such as a birthday, or when a bill is due as an example.
  • Take regular time outs: even if you are busy, it’s possible to take 5mins to shut your eyes, or do some stretches. This can help clear your head and stay focused; if your mind isn’t well focused the last thing you want is to overwhelm it.
  • Be sensible with your activities: Finally tackling some great written work may not be the best idea at these times, reading can be a good idea, but keep it something you can easily focus on, don’t add to frustrations just because you’ve always wondered if Dickens really is that good.
  • Work when you’re at your best: If it’s possible, try and work at the best time of day for you. Some people may find that the brain fog is worse earlier or later in the day.
  • Eat regular meals: avoid high sugar meals when you eat. A sugar spike means your sugar will drop. You don’t have to be diabetic to have sugar spikes and drops.
  • Avoid known allergens: both environmental and food allergies.
  • Drink plenty of water
  • Avoid chemical exposure: If you are chemical sensitive, be sure to avoid chemical exposures from creams, cleaning products, etc. Those with chemical sensitivities may find exposure triggers brain fog
  • Open a window if in the car: I cannot actually explain this, but even being a passenger in a car has been a trigger for brain fog for me personally, opening the window a touch can help this.
  • Deep breathing: It could help to clear your head just to do some simple deep breathing, it helps to swing your arms above your head as you breath in, and slowly lower them as you breath out, the action will help open the diaphragm and allow for deeper breathing.
  • Exercise: This recommendation comes with a warning, for some people with certain conditions this could be a very bad idea. If the fog is a side effect of extreme fatigue, physical activity could make it worse, in these cases rest is what’s needed. For others a short walk may clear the head.

    • It may be helpful to keep a diary; this is helpful to monitor any symptoms. Keeping a record of when the brain fog occurs can help identify possible triggers. It also allows you to identify what makes it worse and what makes it better. A little trial and error of techniques to manage it such as those mentioned above will be needed to find what works best for you.

    Source: The Recovery Room – http://www.recoveryroom.com.au

    My own comments:I agree with most of What Kristy has said..

    Pace yourself at all times, and rest as needed. Rest is taking at least fifteen minutes to relax, preferably laying down with your eyes closed, otherwise you are not truly giving your body a break.

    Water is awesome – it helps clean the toxins out of your body, a natural flush so to speak. 8- 8oz glasses of water. Myself I can stomach that much straight water..  I half juice with water when I can..  Makes it easier..  But not too much cuz juice can be high in sugar & calories..  An alternative to crystal light or other 0 Calorie powder if you can tolerate the sugar substitute.

    Skip the caffeine.. In addition to the crashes & everything Kristy mentions there is also the fact that if you drink too late (& how late is too late depends on the caffeine & sugar content) it will keep you up and be detrimental to your sleep..

    Eating regularly is my biggest problem. The recommendation is three small meals a day with three snack in between..  This allows your sugar levels to be more consistent over the day that sparatic eating, as well as the simple 3 squares a day. You are also less likely to snack. If you are going to snack, try & make it veggies..  Keep pealed carrots & celery in the fridge and have a stock of fresh fruit around. I usually avoid raw veggies, ignore the fruit & go for cookies.  I do find it easier to make salads at night with dinner than a 2nd veggie because I keep a greens salad mix in the fridge that is ready to go & you can add more if you want; cucumber, radish, pepper, apples, celery, or cheese are options here.  Just a tip to make things a bit easier.

    Reminders are necessary for me..  We’ve tried also of different plans and tricks to help with this. We’ve used a white board. We’ve used an automated to-do list on the web. We’ve used an online calendar, as well as a local (on my pc) calendar – this helps keep my appointments organized as well as birthdays/anniversaries, but not daily stuff around the house. We tried post-its, and notebooks but I’d loose them or start a new book/list. I currently have a written to-do list that we re-evaluate daily or every other day to keep me on track, to adjust for pain & fatigue, and to prioritize tasks.

    Avoid allergens – I think this is a no brainer..  gets tested if you haven’t already. I have my environmental testing done..  need to get my food testing done.

    Exercise, in my opinion is necessary, despite what Kristy says. I try to do yoga & aqua fit regularly..  I agree that some are not able to do that much, so even a walk around the block, or one of those exercise videos specifically for Fibromites. I have one and it’s all based in a chair. There is also chair-based yoga in some areas that are available, usually for seniors.

    Kelli

    What do I do?

    Posted by Kelli on May 30th, 2009

    For my fibromyalgia, I currently take the following Medications/supplements

    • Multi-vitamin – Naturapathy Dr does not recommend Centrum or most pharmacy brand multi’s
    • Calcium & Magnesium with vitamin D – Calcium cuz Women with Endo are more susceptible to Osteoporosis. Mg & D to help absorb the Calcium. The Magnesium also to help with muscle spasms & charlie horses. I have found that it has helped.
    • Fish oils – Generic fish oils, minimum 1000mg a day .. Well, I try to. Naturapathy Dr recommended 1000mg-3000mg daily of the EPA+DHA to help with mental acuity. I’m still waiting for the fog to lift, but I’m not usually getting enough to impact because I fog up & forget.. Lovely catch 22 there.
    • B complex to help with stress and ensure that I get enough B’s. No, I don’t take a stress formula. Just a normal B complex.. either 50mg or 100mg
    • Codeine Contin for maintenance pain.
    • Tylenol #3 for breakthru pain
    • Oxy codone for severe breakthru pain
    • Flexeril (Cyclobenzaprine) as a muscle relaxer. I find it better than anything OTC..
    • Probiotics to help regulate my digestive track – it works, ‘cept when I have an IBS flare or food sensitivity
    • NSAID, but it’s for my Endometriosis, so I don’t really know if it does impact my FMS or not.

    For my fibromyalgia, I currently participate in the following exercise:

    • Aquafit, really carefully – I’m just getting back into exercise, so I am trying to get to the gentle classes. My local YMCA gym has a class or arthritics and for osteoporosis. Aquafit is a good choice because of the buoyancy of the water, it doesn’t impact my knees, and it’s a gentle eardio
    • Seriously, right now that’s it. I need access to a hot tub to do further exercise to keep my body warm.

    For my fibromyalgia, I intend to return to the following exercises:

    • Yoga with the hot tub – Yoga provides gentle stretching while working on core strength and balance. The hot tub helps to keep muscles relaxed afterward.
    • Keeping up with Aquafit – see above :)
    • Walking the track to music with the hot tub – I got into walking when my nieces were born, walking with my sister. After I joined the Y and my nephew was born, I would take him in his stroller to walk him around the track. He’s too old now, but I have found it enjoyable with my MP3 player (or CD player back then). I sometimes dance a little bit and my pace changes with the music I’m listening to. It’s hard to overexert myself. :) The hot tub helps to keep muscles relaxed afterward.

    A benefit from the exercise is that I tend to be tired out afterward and relaxed. This makes evening workouts idea in that I go home, go straight to bed and will sleep well, with a decent amount of healing rest. This improves me, physically, emotionally and mentally for the next day.

    For my fibromyalgia. my spiritual side is limited. I don’t go to church often, however I do find solace in my home church’s sanctuary. I’ve moved away from my home church and have yet to try out the sanctuary here. I also find the same ’state of grace’ from music, especially my churchy music :)

    For my fibromyalgia, because of my physical limitation, I am limited socially. Most of my social interaction is via the internet on Twitter, Facebook, Email, etc.. The alternative to that in real life is with my SO and his friends. Most of my friends no longer talk to me, or are too far away for more than email. The classes as the Y present a new socialization source, which I hope to be helpful. With the improvement of my health I would like to return to scouting in some sort of part-time or limited capacity.

    For my fibromyalgia and my cognitive abilities, I am starting this blog. It will help keep me thinking and requires research. It also provides a creative outlet. I also enjoy doing word searches and have, on recommendation on my therapist, started to colour and have other crafts options available to me.

    For my fibromyalgia and an emotional aspect, I have a councilor and have beep placed on anti-depressants. While my time with her is limited I do find that I feel better asfter I speak with her. Additionally I have the support with my SO. While sometimes he can not understand and becomes frustrated, I know he only has best intentions where I am concerned.

    How do I cope? Not well. Other than the limited exercise mentioned above, the odd screaming match and the rarer still church visit, I have no real outlets..  Which sucks. Before I got sick, my outlets for frustration and anger and stress were physical. With the fibro, I have lost that. Any suggestions are welcome :)

    Categories

    Posted by Kelli on May 24th, 2009

    The sole purpose of this post is to create, and potentially modify categories for this Blog. Initially, I had this categorized list.. Three columns, each with the appropriate title.. That was until I realized, well, I needed a new category.. I don’t have room for 4 columns, so I gave up on that idea . I’m just gonna put ‘em in alphabetical order and then add later as needed.

  • Ability/Disability, Allergies, Alternative Medicine, Alternate Treatments/Medications, Articles, Assisting Devices, Auto-immune disorders, Awareness Ribbons, Anger
  • Behaviour
  • Chemical Sensitivities, Chronic Fatigue Syndrome/ME, Cognitive Limitations
  • Depression and Mental Health, Disability funds [CDN], Disability funds [US]
  • Endometriosis, Exercise, Emotions
  • Fatigue, Fibromyalgia
  • Goodsearch.com, Grooming, Gender
  • Hypo/Hyper-Active Thyroid
  • Intro, Irritable Bowel Syndrome
  • Legislation [CDN], Legislation [US], Links
  • Medications, Memory Impairment, Music
  • Non-medical
  • Pain, Personal, Personal Activities, Physical Limitations, Physicians, Possibilities, PuppyDog
  • Quotes
  • Relationships, Research, Restless Leggs Syndrome, Rest
  • Spirituality/Faith, Spoon Theory, SleepSupport, Stress, Supplements
  • Tips, Twitter
  • Vent
    •