I was helping someone out today who is in a bit of a pickle. A very tangy pickle and have tried to help and advise when I could. So I am here for the duration and have just now started to get back to typing this after being preoccupied by customers for half an hour. Back to suiting on my little foot stall behind the counter.
Earlier on while doing this I had a series of body annoying text messages from someone who is self absorbed and should know better. I was just asked why they are doing this and I said that as my blog has been going 18 months and I am not sitting on a throne then it is fair game to be able to lecture about it being a failure.
1. They know nothing about the condition not have read this blog, even just the few pays about my condition.
2. They told me a series of things I am doing wrong on here and the YouTube account, which is weird because they know nothing about how to do a blog or have a YouTube account?
3. The other night while speaking on the phone they said 'Well good do you know you have this condition? ( In a sarcastic tone as if to say your stupid and you have not got something until a practitioner who is merely general in knowledge tells you so?) When I starred that the latest GP has referred me to Guy's Hospital and that the rest involved a blood count along with hire that works and what it tells you they said 'oh'. Then I mentioned elements of the condition to the new GP and the drug Sodium oxybate and he said 'Mr Haswell, your now teaching ME!' With quite a surprised tone they said... REALLY?! But now it was running down my YouTube account as far add cycling with no hands, to show hire good I am because I do it to give me back relief from pain while cycling. And my singing which is a bit croaky but I did to show a human side to me just to help people see the real me in the hour that they will not really accept my statements on the blogs. But I think people related are starting things more to do with selfishness and likely the embarrassment of it all. Which is not fair really. Also if you cannot be bothered to read anything because your life is so important then your not going to discover things that may help you in your life. The leading houses to water line could not be motte descriptive of my family without a bloody camera! Lol!
Anyway, I would not mind but these were things I did nearly a year ago and only NOW they are finding them. Lol! So my very strong suspicion that they do not look at anything has just been proved! No of course I do not know what I am doing. But then this blog was never for them and I knew they would not read it anyway.
To be honest I was not sure that anyone would.
So today I did a little search on Fibromyalgia and stated copy and pasting a very interesting and in depth site for the condition. Of extreme interest is it runs through several families of drugs from NSAIDS to Neurological, SSRIs and even Sodium oxybate! It is American based but is interesting and the conclusions that I have found myself is completely mirrored by their descriptions!
I have included a series of copy and pasted sections that I thought were the most interesting and I have provided the link below as other things on there others may find relevant, useful or helpful?
Now I will sign off and state that everything below are quotes from said website but anything bold and in curly brackets are my own notes for certain sections! Just for the record...
1. The anticonvulsants pregabalin (Lyrica) and gabapentin (Neurontin) have both been recently shown to be effective in randomized controlled trials, and pregabalin is now FDA-approved for treatment of firbromyalgia. Both are generally well-tolerated by most patients; pregabalin is most effective at a total daily dose of 300 - 450 mg (usually in two or three doses), while gabapentin dose ranges from 1200 – 2400 mg daily (divided into 3 or 4 doses). Sedation is a concern with higher doses of both medications, and relatively larger doses are usually reserved for just prior to sleep. Alprazolam (Xanax) is the only benzodiazepine studied so far that has shown limited usefulness in fibromyalgia.
{Just prior to Amitriptyline given these which did work on feet at over 400mg, 1st to do so. But at 900mg started to make me ill and stopped taking. Was refused Pregabalin.}
2. Serotonin/norepinephrine reuptake inhibitors include the antidepressants duloxetine (Cymbalta), milnacipran (Savella), and venlafaxine (Effexor). These medications are known to improve pain and function regardless of underlying depression. Milnacipran also binds specific receptors, which are thought to be important in chronic pain.
{Given Venlafaxine for depression/anxiety but rarely left house. Did not work}
3. Tricyclic antidepressants (TCAs), specifically amitriptyline (Elavil), are probably the oldest type of drug therapy suggested to be effective for fibromyalgia. Use is limited, however, because many patients experience common side effects of dry eyes or mouth, drowsiness, and weight gain. The response rate for amitriptyline is about 30 to 50%. Improvement may be noted in pain relief, fatigue, and sleep quality. The usual dosage range is 10 to 50 mg, started at the lowest dose with incremental dose adjustment to minimize side effects.
{Prior to self diagnosing FMS CFS I was given these (Oct 2013), they worked on feet, only second drug to work on feet}
4. Serotonin re-uptake inhibitors (SSRIs) represent another class of antidepressants felt to be potentially helpful for symptoms of fibromyalgia. Fluoxetine (Prozac) was shown to be of benefit in 60 patients with FMS in a 12-week placebo-controlled study. Improvement was independent of any effect on depressive symptoms. Study dose was flexible, from 10 to 80 mg per day; mean daily dose was 45 mg. Longer-term follow-up (beyond 12 weeks) was not reported.
{Prozac was a long time ago prior to feet pain so over 13 years}
5. Cyclobenzaprine (Flexeril), a common muscle relaxant, reduces brainstem noradrenergic function and motor neuron efferent activity, and is another commonly used medication with some proven benefit in fibromyalgia. Efficacy appears to decline with increasing duration of use, however, and sedating effects (even with the commonly used dose of 10 mg) often limit use to bedtime.
6. Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) are of debatable benefit in FMS patients, although most patients have been on NSAIDs at some point in their disease course. NSAIDs may have modest benefit in reducing pain in patients with FMS through analgesic rather than anti-inflammatory mechanisms.
{No effect unless over 3000mg in Ibuprofen}
7. Tramadol (Ultram) is a mu-opioid receptor antagonist felt to have lower addictive potential than traditional narcotic drugs. It has been suggested for patients who have had incomplete relief with or who have not tolerated other medications. Dosages range from 50 mg as needed up to 100 to 150 mg several times per day. Traditional opioids are avoided unless other measures have failed.
{I could not state with any certainty that Tramadol were effective - on feet not at all}
Other promising pharmacologic agents include dopamine agonists (e.g. pramipexole), tizanidine, and even gamma-hydroxybutyrate (sodium oxabate). Other research agents currently under investigation include intravenous lidocaine and growth hormone. S-adenosyl-methionine (SAMe), a supplement available in health food stores, has been evaluated in several double-blind, randomized, controlled trials that have shown mixed results. Limitations include lack of conclusive benefit and the current limited availability of standardized preparations.
Although medications discussed below are FDA-approved, only Lyrica (pregabalin), Cymbalta (duloxetine), and Savella (milnacipran) are currently FDA-approved for use in fibromyalgia. You should understand that if you and your doctor decide that "off-label" use of another medication is appropriate for you.
{Bizarrely this tends to insinuate something that I have stated to rolling eyes Doctors who obvious have the wrong facts on the drug - Cannabis?! I can say that there were periods in the past when I used it. But the entire period was barely more than 5 years as well as being on and off. Yes things were better when you was on it definitely. The only drug that ever worked until Gabapentin and Amitriptyline! But I have not used for three years and quit smoking over a year ago. So reluctant to use it. Never found it addictive other than the improvement to my pains and relaxing. Bizarre is it not that a drug that could write passivity be prescribed cheaply is avoided along with the only ones that work because they are expensive!!}
Traditional pain medications are often ineffective, and use of narcotic analgesics is discouraged.
Laboratory tests in fibromyalgia are classically normal. Therefore they are not helpful in diagnosing or monitoring the syndrome. However, the following should be done to make sure you don't have any other disorders. These include: complete blood count (CBC), chemistries (including muscle enzyme tests CPK and aldolase), thyroid function tests, urinalysis, erythrocyte sedimentation rate (ESR), and a check of autoimmune blood markers such as antinuclear antibody (ANA) and rheumatoid factor (RF).
Associated syndromes are disorders which, while recognized as primary syndromes themselves, may overlap clinically with fibromyalgia and may reflect some manifestation of the same central sensitization process. These include: migraine, premenstrual syndrome, irritable bowel syndrome, restless leg syndrome, and Raynaud's syndrome. The degree of overlap may be significant; for example, one-third of patients with fibromyalgia also fulfill criteria for irritable bowel syndrome (IBS).
These include increased levels of substance P (known to influence pain perception) and lowered levels of serotonin (known to influence both mood and pain perception)
abnormalities are commonly documented on sleep electroencephalograpy (EEG)
Sleep abnormalities:
Insomnia is a frequent complaint of patients with fibromyalgia, and abnormalities are commonly documented on sleep electroencephalograpy (EEG), or brain wave monitoring. Up to 80% of patients show a characteristic pattern of abnormality with alpha wave intrusion into the normal delta rhythm of stage 4 (non-REM) sleep. Although not specific for FMS, this irregular sleep pattern may be an important factor contributing to the severity of symptoms. Muscle symptoms have been shown to develop in healthy subjects with experimentally interrupted sleep; such symptoms may relate to a resulting serotonin deficiency.
{My medical records will state I was first prescribed sleeping pills likely 15 years ago. I also know I had then for sure the year after my dad passed away. This was 10 years ago.}
One cannot underestimate the importance of reassurance and support for patients with fibromyalgia.
LINK...
http://www.hss.edu/conditions_in-depth-overview-fibromyalgia.asp
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