Preg(abalin)nant Pause

My normal dose of Lyrica (pregabalin) is 150 mg in the morning and 150 mg at night.

But I have been suffering from some major headaches so my Pain Specialist has decided we should up the dose…

So last night, instead of taking 150 mg, for the first time I took 225mg of Lyrica.

zombieToday, it took me 4 hours to THINK about getting about bed (after which, I took my 150 mg of Lyrica plus all the other crap I take) and I’ve been a zombie ever since. No pain but no anything else, either. I’m hoping, like the last increase, this ‘totally-out-of-it’ feeling only lasts 2 days.

The problem is, next week, I have to increase the morning dose, too.

Just hoping it works!

There Ain’t No Magic Pill

“There’s no magic pill…to fix their fibromyalgia,” says Mark J. Pellegrino, MD, of Ohio Pain and Rehabilitation Specialists and author of 13 books on fibromyalgia. “A balanced approach is important.”

And many experts agree the best treatment for fibromyalgia is a multifaceted approach that combines medication with lifestyle changes and alternative treatments.

But what about if you’re new to all of this? Where do you even start?

A treatment plan gives structure to getting from here to there. Be realistic and (yes, you’re already probably sick of hearing this already) small steps! A treatment plan is different from devising goals because of its flexibility and internal exploration. In most clinical settings, a treatment plan review is done quarterly or even monthly. After each review, the plan is rewritten to meet current needs.

Start With a Diagnosis

There are no lab tests for fibromyalgia. Doctors diagnose it by considering criteria such as how long you’ve had pain and how widespread it is, and by ruling out other causes. This can be a long and complicated process because the symptoms associated with fibromyalgia can be caused by other conditions. So it’s best to see a doctor who is familiar with fibromyalgia – which can be easier said than done, sometimes!

Learn About Fibromyalgia Medications – You are YOUR Best Advocate!

Once you’ve been diagnosed with fibromyalgia, your doctor will talk to you about treatment options. Several types of medicines are used to help manage fibromyalgia symptoms such as pain and fatigue.

Three medications are FDA-approved to treat fibromyalgia:

  • Cymbalta (duloxetine): a type of antidepressant called a serotonin and norepinephrine reuptake inhibitor (SNRI). Researchers aren’t sure how Cymbalta works in fibromyalgia, but they think that increasing levels of serotonin and norepinephrine help control and reduce feelings of pain.
  • Lyrica (pregabalin): Lyrica is a nerve pain and epilepsy drug. In people with fibromyalgia, it may help calm down overly sensitive nerve cells that send pain signals throughout the body. It has been effective in treating fibro pain.
  • Savella (milnacipran): Savella is also an SNRI. While researchers aren’t exactly sure how it works, studies have shown that it helps relieve pain and reduce fatigue in people with fibromyalgia.

Antidepressants are also sometimes prescribed to help people manage fibromyalgia symptoms:

  • Tricyclic antidepressants. By helping increase levels of the brain chemicals serotonin and norepinephrine, these medications may help relax painful muscles and enhance the body’s natural painkillers.
  • Selective serotonin reuptake inhibitors (SSRIs). Your doctor may prescribe one of these types of antidepressants by itself or in combination with a tricyclic antidepressant. SSRIs prevent serotonin from being reabsorbed in the brain. This may help ease pain and fatigue.

These medications are also sometimes prescribed for fibromyalgia:

  • Local anesthetics. Injected into especially tender areas, anesthetics can provide some temporary relief, usually for no longer than three months.
  • Anticonvulsants or seizure medications such as Neurontin are effective for reducing pain and anxiety. It is unclear how these medications work to relieve the symptoms in fibromyalgia.
  • Muscle Relaxants are occasionally prescribed to help alleviate pain associate with muscle strain in those with fibromyalgia.

Stay Active

Exercise is an important part of managing fibromyalgia symptoms. Staying physically active can relieve pain, stress, and anxiety.

The key is to start slowly. Begin with stretching and low-impact activities, such as walking, swimming or other water exercises, or bicycling. Low-impact aerobic exercises such as yoga, tai chi, or Pilates can also be helpful. Prior to starting any exercise routine, or if you want to increase the intensity of your exercise, talk with your doctor.

Physical Therapy

Physical therapy can help you get control of your illness by focusing on what you can do to improve your situation, rather than on your chronic symptoms.

A physical therapist can show you how to get temporary relief from fibromyalgia pain and stiffness, get stronger, and improve your range of motion. And she can help you make little changes, such as practicing good posture, that help prevent painful flare-ups.

Alternative Therapies

A number of popular fibromyalgia treatments fall outside the realm of mainstream medicine. In general, there hasn’t been extensive research on complementary and alternative medicine (CAM), but anecdotal evidence suggests that some may work. Always talk with your doctor before starting any alternative treatment.

Popular alternative treatments include:

  • Acupuncture. This ancient healing practice aims to increase blood flow and production of natural painkillers with thin needles inserted into the skin at strategic points on the body. Some studies report that acupuncture may help ease pain, anxiety, and fatigue.
  • Massage therapy. This may help reduce muscle tension, ease pain in both muscles and soft tissue,improve range of motion, and boost production of natural painkillers.
  • Chiropractic treatment. Based on spinal adjustments to reduce pain, this popular therapy may help relieve fibromyalgia symptoms.
  • Supplements. A number of dietary and other supplements are touted as treatments aimed at relieving fibromyalgia symptoms. Some of the most popular for fibromyalgia include magnesium, melatonin, 5-HTP, and SAMe, which may affect serotonin levels. However, results of studies on these supplements are mixed. Be sure to talk with your doctor before taking any supplements. Some may have side effects and could react badly with medication you are taking.
  • Herbs. As with supplements, scientific evidence for the effectiveness of herbs is mixed. A few studies have shown that St. John’s wort can be as effective as certain prescription medication for treating mild depression.

This is just a start – and you will probably need to tweak your plan as you go along, throwing out activities and treatments that don’t work for you, while grasping the positives with both hands. Remember, it may take a while to get where you want to be – it is all about experimentation (and just because something works for me does not mean it will work for you).

If you’d like to see iHerb’s selection of supplements, click here. Use Coupon Code LHJ194 to get $10 off any first time order over $40 or $5 off any first time order under $40.

Lab Rats Wanted

Are you willing to put your body on the line? Or might you be at the end of your tether and willing to try anything?

As it is beyond me to list EVERY research study on FM, here are all the studies that are currently recruiting in the top 6 countries where my blog is being read:

*** If you live in another country, visit ClinicalTrials.gov, then enter your country and ‘fibromyalgia’ in the search box…you never know what you might find ***

Australia

NIL

Canada

A Phase 3b Multicenter Study of Pregabalin in Fibromyalgia Subjects Who Have Comorbid Depression

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin; Drug: placebo

The Impact of Omega-3 Fatty Acid Supplements on Fibromyalgia Symptoms

Conditions: Fibromyalgia

Interventions: Dietary Supplement: Omega-3 (oil); Dietary Supplement: Fatty Acids (placebo)

Online Acceptance-based Behavioural Treatment for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Acceptance-based behavioural therapy;   Other: Will vary per participant

India

Adolescent Fibromyalgia Study

Conditions: Fibromyalgia

Interventions: Drug: placebo; Drug: pregabalin (Lyrica)

A Study of Duloxetine in Adolescents With Juvenile Primary Fibromyalgia Syndrome

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine; Drug: Placebo

Pregabalin In Adolescent Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: pregabalin

Israel

Prevalence of Fibromyalgia in Israel

Conditions: Fibromyalgia

Interventions:

Effect of Milnacipran in Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Minalcipran; Drug: Placebo

Peripheral Arterial Tonometry (PAT) Evaluation of Sleep in Fibromyalgia

Conditions: Fibromyalgia

Interventions:

Study Assessing the Efficacy of Etoricoxib in Female Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: etoricoxib

Cognitive Dysfunction in Fibromyalgia Patients

Conditions: Fibromyalgia

Interventions:

United Kingdom

NIL

United States of America

Observational Study of Control Participants for the MAPP Research Network

Conditions: Fibromyalgia; Irritable Bowel Syndrome; Chronic Fatigue Syndrome,

Interventions:

Pain and Stress Management for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Stress and Emotions; Behavioural: Thoughts and Behaviours; Behavioural: Brain and Body

Adolescent Fibromyalgia Study

Conditions: Fibromyalgia

Interventions: Drug: placebo; Drug: pregabalin (Lyrica)

A Phase 3b Multicenter Study of Pregabalin in Fibromyalgia Subjects Who Have Comorbid Depression

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin; Drug: placebo

A Study of Duloxetine in Adolescents With Juvenile Primary Fibromyalgia Syndrome

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine; Drug: Placebo

Pregabalin In Adolescent Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin

Combined Behavioural and Analgesic Trial for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Tramadol; Drug: Placebo; Behavioural: Cognitive Behaviour Therapy for FM; Behavioural: Health Education

Quetiapine Compared With Placebo in the Management of Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: quetiapine; Drug: Placebo

Cyclobenzaprine Extended Release (ER) for Fibromyalgia

Conditions: Fibromyalgia; Pain; Sleep; Fatigue

Interventions: Drug: cyclobenzaprine ER (AMRIX); Drug: placebo

Tai Chi and Aerobic Exercise for Fibromyalgia (FMEx)

Conditions: Fibromyalgia

Interventions: Behavioural: Lower frequency, shorter period of Tai Chi; Behavioural: Higher frequency, shorter period of Tai Chi; Behavioural: Shorter frequency, longer period of Tai Chi; Behavioural: Higher frequency, longer period of Tai Chi; Behavioural: Aerobic Exercise Training

Effects of Direct Transcranial Current Stimulation on Central Neural Pain Processing in Fibromyalgia

Conditions: Fibromyalgia

Interventions: Procedure: Transcranial Direct Current Stimulation (tDCS)

Lifestyle Physical Activity to Reduce Pain and Fatigue in Adults With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Lifestyle physical activity (LPA); Behavioural: Fibromyalgia education

Neurotropin to Treat Fibromyalgia

Conditions: Fibromyalgia

Interventions: Neurotropin

Effect of Milnacipran on Pain in Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Neurotropin

Investigation of Avacen Thermal Exchange System for Fibromyalgia Pain

Conditions: Fibromyalgia

Interventions: Device: AVACEN Thermal Exchange System

Phase 2 Study of TD-9855 to Treat Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: TD-9855 Group 1; Drug: TD-9855 Group 2; Drug: Placebo

Cymbalta for Fibromyalgia Pain

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine

Effects of Milnacipran on Widespread Mechanical and Thermal Hyperalgesia of Fibromyalgia Patients

Conditions: Fibromyalgia

Interventions: Drug: Milnacipran

Qigong Exercise May Benefit Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Intervention Group; Behavioural: Placebo Comparator: Control Group

Effect of Temperature on Pain and Brown Adipose Activity in Fibromyalgia

Conditions: Fibromyalgia, Pain

Interventions:

Effect of Milnacipran in Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Minalcipran; Drug: Placebo

The Pathogenesis of Idiopathic Dry Eyes

Conditions: Dry Eye, Fibromyalgia

Interventions:

Evaluation and Diagnosis of People With Pain and Fatigue Syndromes

Conditions: Fatigue; Fibromyalgia; Pain; Complex Regional Pain Syndrome; Reflex Sympathetic Dystrophy

Interventions:

The Functional Neuroanatomy of Catastrophizing: an fMRI Study

Conditions: Fibromyalgia

Interventions: Behavioural: Cognitive Behavioural Therapy; Behavioural: Education

A Placebo-Controlled Trial of Pregabalin (Lyrica) for Irritable Bowel Syndrome

Conditions: Irritable Bowel Syndrome

Interventions: Drug: Pregabalin (Lyrica); Drug: Placebo

 

 

Got Morning Stiffness?

When asked, most of us would say that the most debilitating symptoms of FM are pain, fatigue, and sleep disturbances. For me, the next one is stiffness – and who wouldn’t complain about waking up each morning to a body that feels like the final stages of rigor mortis?

But most doctors generally regard it as a minor symptom or a sign of inflammation unrelated to the fibromyalgia.

121. rise and shineWhen doctors think of stiffness, they conjure up rheumatoid arthritis and other inflammation-related joint diseases that make it harder for these patients to get going in the morning. Yet studies in FM patients also show stiffness is usually worse in the morning and “morning stiffness has been rated as more severe in fibromyalgia than rheumatoid arthritis,” says Robert Bennett, M.D. of Oregon Health and Science University in Portland. He says people with both conditions have worse stiffness than those with FM alone. But why would FM patients be troubled by stiffness?

As people age, they get arthritis, become less active, and expect a little morning stiffness. However, this does not explain why a 25 or 45-year-old FM sufferer would show signs of joint stiffness on a test involving the ankle. Needless to say, FM patients showed twice as much stiffness as age-matched healthy controls.

Stiffness sometimes correlates with pain, which means that the drugs used to treat our pain should help with the stiffness – but, in a study supported by Eli Lilly, the use of Cymbalta only improved the symptom by a tiny 10%. This compares closely to the 13% benefit found in the trials of Lyrica.

If the pain of FM was solely related to the stiffness, the drugs should be able to produce significant improvement in this symptom. Yet they don’t.

Fibromyalgia is a messy multi-system condition. There is the central nervous system component involved in processing pain, an area all the drugs are supposed to work on (Cymbalta, Lyrica and Savella). There are trigger points and tender points, which cause serious pain and restrictive movement. In addition, you have to remember the circulatory system, and FM patients have increased arterial stiffness (but that’s a whole other post).

Your arteries should be flexible, but studies show a reduction of the elastic-like qualities in us compared to age-matched controls. An overly active sympathetic nervous system is thought to be partly to blame.

Therapies to relax your sympathetic nerves, such as a hot shower and many other approaches, often ease morning stiffness. One of the three FDA-approved drugs may even help, but just don’t expect too much from them.

Untitled

Quick Update…and it’s over! Amazing News at the End.

Little pink envelopes and email sent.

Return email:

The two items I mentioned were only a sample of your rhetoric. There are many other items that you mentioned that also need apologies. In saying that you only want to discuss the letter with me, shows me your lack of respect you have for Yvonne, as its your attitude towards us that has caused most of your problems. The way we relate to each other has a lot to do with your attitude towards us, and I will only discuss the letter if Yvonne is present, as I have shown her all the recent e-mails. 

Yvonne & Dad. 

PS: We both don’t quite understand one of your statement in your last paragraph namely, what does “choosing me” mean ?? 

And that’s it…it’s over. All my compromising is done. No more responses…ZIP!

And now for the good news…

Federal Health Minister Tanya Plibersek announced today that the government would subsidise pregabalin (Lyrica) through the Pharmaceutical Benefits Scheme (PBS).

“This listing will be a great relief to hundreds of thousands of Australians who suffer from chronic nerve pain,” Ms Plibersek said. “It can be so debilitating that it affects people’s capacity to work and go about their daily lives.”

Pregabalin is the first PBS listing specifically for the condition, which has a variety of causes and symptoms.

 

Miles to go [While] I Sleep

Last night, I went to bed at about 1am. This afternoon, I woke up at 1.45pm. That’s almost 13 hours sleep!

 

Since I’ve been back from Bali, the hours of sleep I have been having have been increasing steadily.

Now, don’t get jealous – I don’t wake up feeling refreshed; in fact, I think I hurt more than ever. I wake up a number of times and try to move but it hurts so much that I end up falling back to sleep. I really don’t know what I’m doing while I’m asleep but…

That is the way my bed looks before I go to bed…
And this is the way my bed looks when I wake up!

You know how sometimes we say that we wake up feeling like we ran a marathon? Maybe I am!

Every night I take 150mg of Lyrica (I don’t think that helps me sleep as I take the same amount in the morning) and just 2mg of Valium, which is supposed to relax my muscles enough for them to rest while I am sleeping. I guess that’s not working.

So I really have no idea why I’m ‘sleeping’ so much. I do know that I keep putting off my bedtime because I really don’t want to wake up…in pain.

Fibro Fog Explained?

Pain and accompanying depression and anxiety might be reasons for the lack of working memory in patients with FM, according to a recent study.1

On average, the patients with FM displayed inferior performance compared with controls based on accuracy and response time. These differences were statistically significant, due to a lot of medical gobbledygook (as follows, if you can understand it):

During n-back tasks, researchers utilized functional MRI to study activated and deactivated brain regions. The researchers also found significant relationships between the FM group and the controls when using the Beck depression inventory and Beck anxiety inventory as covariates (P<.01 for both).

Between-group analyses showed that within the working memory network, the inferior parietal cortex was associated with pain ratings that were mild (r=0.309, P=.049) and moderate (r=0.331, P=.034). Two-sample between-group analysis showed significantly higher activation in the controls than the FM group in the ventrolateral prefrontal cortex (VLPFC), the thalamus, middle temporal cortex and inferior parietal cortex (P<.05, FDR-corrected for multiple comparisons at the voxel level). The comparison also showed the left dorsolateral prefrontal cortex, right VLPFC and right inferior parietal cortex were related to depression and anxiety ratings.

Basically, FM patients showed reduced activation in several brain regions which may be associated with impairments in maintenance and manipulation of working memory. The working memory deficit may result from both pain itself and depression and anxiety associated with pain.

 

 

  1. Forty-one women were enrolled in the study — 19 with FM and 22 healthy participants. The mean ages of the patients were 38.73 years and 38.27 years, respectively. The control group included volunteers who were screened for chronic widespread pain, generalized weakness, sleep disturbance and specific tender points. The FM patients were recruited from outpatient rheumatic clinics at five hospitals in South Korea. The mean disease duration for FM was 39.41 months, and those patients showed average tender points of 13.37. Seven FM patients reported taking antidepressants: six on 75 mg pregabalin once daily, and one on 75 mg pregabalin and 25 mg milnacipran once daily.

DANGER!

 

The powers-that-be (my GP, my rehab doc, Mommy and I) have decided that the experiment to wean off Sertraline (anti-depressant) and start Cymbalta (both anti-depressant and used for FM pain), in the hopes that I could lose the Lyrica from my daily intake, has failed; so we are reversing all our (my) hard work to go back to the way it was. It wasn’t perfect (far from it) but it was better than what I have now.

So, all good, right? Not quite. I want to be back on the sertraline (and away from icky side-effects) in two weeks – for when I go to Bali (that would be the very festive, hot pink area). So, we are fast-forwarding it all:

 

Basically, I’m warning you guys that my posts and comments could be…um…interesting (not sure if that would be the right word).

Now, you might be wondering what that last column labelled Codeine is about: after my holiday (vacation for you US  citizens), my rehab doc has decided I need to give up codeine (hence the very red part) before we try any other type of pain killer – cold turkey: no panadeine forte, no panadeine extra, no ibuprofen plus, etc! And no anti-inflammatories! I’m doing it at home but he has said that some people have to go to hospital – I hope not me. I am very attached to writing to you guys from my couch each day.

 

H-E-L-P!

I have a really big problem with this crap thing called Pacing.

I understand the theory behind it all; I just don’t get how to actually incorporate it into a life: I understand that yesterday I was supposed to walk for 31.5 minutes and that works perfectly well if I leave my house and walk for 15.75 minutes and then turn around to go home. But what is supposed to happen when I’m in one place and Mommy asks me to meet her somewhere? Do I walk for 31.5 minutes and then just…what?

Today, I went to the hairdresser (Mommy’s treat) because today was the day she could fit me in.

On the way back to Mommy’s, I stopped to pick up packing wrap to send all those wonderful bangles (when they arrive). We had lunch, then it was off to the rehab centre for a review with the physio, occupational therapist and doctor.

Regular readers of this blog will know that I have weened myself off sertraline, built up my dosage of Cymbalta and hope to stop the Lyrica. Small problem – I am currently on 120mgs of Cymbalta and 300mg of Lyrica and I am not comfortable with my pain management so I don’t want to stop the Lyrica; and, as an anti-depressant, I much prefer the sertraline (and I think it prefers me!) So The Team decided that after all of that stuff, we are going to reverse it all and go back to where were at the start.

After all that, a quick stop at the supermarket to pick up dinner for Z (who is going to stay the night tonight) and then home.

Then, I think I had my first-ever anxiety attack. Z was due in half an hour and I had to child proof my place again, air the place out so it wouldn’t smell of smoke for the Kid, have a rest (?), empty my shopping bags, etc. H-E-L-P!

I called Mommy and she took Z for the night (I’ll see him tomorrow), and I sat silently in my quiet house for a couple of hours.

Now, my question: how the hell was I supposed to pace today?

Seeking Participants for Lyrica Study

University of Utah Recruiting Fibromyalgia & FM/CFS Patients for Pregabalin Biomarker Study

The Department of Anesthesiology at the University of Utah, Salt Lake City, announced July 10 that it is seeking participants for a study to investigate Lyrica’s “effects on blood biomarkers” in patients with fibromyalgia or FM & chronic fatigue syndrome (ME/CFS).

Lyrica (pregabalin) is a prescription drug marketed by Pfizer that gained FDA approval in 2007* for treatment of fibromyalgia.

Study Details

According to the July 10 blood biomarkers study announcement:

  • Researchers hope to learn more about why Lyrica is effective for some patients and not for others.
  • Volunteers with fibromyalgia (FMS) or chronic fatigue syndrome and FMS who are NOT currently using Lyrica are needed to participate in this IRB-approved trial.
  • Eligible volunteers will receive Lyrica for five weeks and a placebo for five weeks, and will be compensated for their time.
  • For more information, contact Andrea White (andrea.white@hsc.utah.edu)

* As Pfizer’s Lyrica patents begin expiring, in October 2013, the $3.4 billion annual Lyrica market will be opening to ‘generic’ (generally lower price – YIPPEE!) versions of the drug, and as of July 5, the FDA approved marketing of a generic pregabalin product by Lupin Pharmaceuticals.