Wednesday 23 January 2013

Some Fibromyalgia info ( American medical studies)


Is gabapentin (Neurontin, others) an effective fibromyalgia treatment?

Answer

from Ann Vincent, M.D.
Only one high-quality clinical trial has looked at gabapentin (Neurontin, others) as a fibromyalgia treatment. In that study, the drug reduced participants' reported pain, fatigue and sleep disruption more effectively than did a placebo.
Gabapentin has not been approved by the Food and Drug Administration (FDA) for the treatment of fibromyalgia, although some doctors may prescribe it off-label for such use. The FDA has, however, approved a similar drug — pregabalin (Lyrica) — for fibromyalgia treatment.
Gabapentin and pregabalin were originally approved to treat certain types of epilepsy and nerve pain. Both drugs work by limiting the release of pain-communicating chemicals by nerve cells in the brain and spinal cord.
Because gabapentin is available in generic form, it may be less expensive than pregabalin. But you have to take gabapentin three or four times a day, which makes it less convenient than pregabalin, taken in two daily doses. The most common side effects of both drugs are dizziness and drowsiness.

Is fibromyalgia hereditary?

Answer

from Connie Luedtke, R.N.
Fibromyalgia isn't passed directly from parents to children the way diseases such as cystic fibrosis and hemophilia are. But family studies have found that the odds of having fibromyalgia are several times higher in the immediate families of people with fibromyalgia than in families in which no one has fibromyalgia. These observations suggest that heredity is a factor in causing fibromyalgia.
In fact, studies of DNA from family members of people with fibromyalgia and chronic pain syndromes have turned up a number of genes that could help explain why these disorders seem to run in families. Each of these genes plays a role in your nervous system's response to things that hurt, such as pressure and heat. Some of the same genes are also associated with depression and anxiety, which may be the reason why certain antidepressant medications help reduce fibromyalgia symptoms.
Researchers are now trying to connect differences in individuals' pain thresholds to particular variants of specific genes. A variant of the gene that determines how efficiently nerve cells recycle the neurotransmitter serotonin has already been correlated with heightened pain sensitivity.

I have fibromyalgia. Whenever my rheumatologist does blood tests, I'm told that I have elevated ESR and CRP levels. What's the significance of these test results?

Answer

from April Chang-Miller, M.D.
An elevated erythrocyte sedimentation rate (ESR) or a high level of C-reactive protein (CRP) in your blood may indicate inflammation somewhere in your body. However, it's not likely related to your fibromyalgia, since fibromyalgia isn't an inflammatory condition. Various conditions can cause elevated ESR and CRP levels, including:
  • Infection
  • Rheumatoid arthritis
  • Inflammatory bowel disease
  • Cardiovascular disease
  • Cancer
To better understand the clinical significance of your elevated ESR and CRP levels, consult your doctor.

Hypnosis For Fibromyalgia

The symptoms of fibromyalgia can sometimes be so painful that they prevent sufferers from going to work, attending school classes, or just managing their daily routines. Unfortunately, there is no cure available for fibromyalgia syndrome, so patients often resort to numerous different treatments to lessen the severity of their fibromyalgia symptoms. However, hypnosis is now emerging as one of the best alternative treatments available for fibromyalgia 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 fibromyalgia pain symptoms, consider hypnosis as a treatment option.


Tuesday 22 January 2013

I'm very tired today , slept til midday , but i feel i will need to go back to bed shortly i feel so tired. Its cold out so even if i could , i think to go out wouldn't be the best idea for me today . 

I've looked on line at various jewellery making kits and have decided to buy a few from ebay that will allow me to begin my new hobby ( you never know, i may even be quite good at it  :-) 

I hope that today is a good day for anyone who reads this , i'm sending you all a smile from my heart 

The joy of time is that its NOW , not a minute ago, not a minute forward - but now ,  its the now that we can't recapture. So live your life for every minute and cherish THE NOW in our lives.

Kira x

Monday 21 January 2013

Sleep ... thoughts ... friends ...

i've slept alot this afternoon , wish it was a refreshing sleep rather than a sleep that leaves me even more tired. But hey, there is alot worse than me and i should be thankful for small mercies . My positive thought for today is not to look at things at pain value , rather look at things much deeper and find a way to be happy that i can actually get out of bed, for there was a time i couldn't even get out of bed.  I also should be thankful for my husband and friends who care about me and support me . I am going to try each day to find at least one positive thing in my life and share it with you .

I would like to design and make my own jewellery , this is achievable if i put my mind to it , and it will also be good for my concentration and motor skills 


To my friends who take time out to talk to me and help support me , your friendship is so special to me , you inspire me and you are forever in my heart. Life doesn't go by without it stresses for everyone and the fact that you lend me a shoulder to cry on means so very much to me . 

To my husband , thank-you from my heart for just being you and always by my side no matter what .

My pledge to you is that i will try to be a better person , and i will try to fight this illness with dignity and positivity , our eyes are the window to our soul, from which our inner beauty shines out , a gift often forgotten .


hugs, Kira x 

Sunday 20 January 2013

Life

Life gets me down sometimes, it seems and feels to me like an ongoing battle, i have got to the point that my pain is too much to bare and i just don't know what to do any more . I'm sick and tired of taking pills that don't work, i'm sick and tired of feeling i am just being brushed aside at times, and i just want someone to help me . I would honestly appreciate if someone would get back to me with their story and their ways of coping. 

I've looked into the pain association but really its not for me , i would gladly go to something that was one-to-one based , but i'm not comfortable being in a group setting talking about my pain and my most vulnerable feelings .

Life , i want my life back, not necessarily how it was before, just life that will give me something to look forward to every morning when i wake up , just a day without pain . 


I feel for those around me, all they see is my miserable life , trying to cope with this is getting to me .


Kira x

Thursday 17 January 2013

bad nite again !!!!!

I had such a bad nite last nite , so much pain, very intense . Its all getting me down that i feel i have reached my rock bottom again , I don't know how many times i have climbed back from this low . I feel at the moment i just can't go on, i wish that i could just run away - leave my pain behind me just for one day 

Desperately want help for my condition , its soul destroying and so difficult to remain positive .

Wednesday 16 January 2013

And so ........

Today i took my two doses of meds with no serious effects tho i'm still feeling uneasy and anxious when i first take them, i noticed yesterday that i was very stressed and anxious which is a new thing for me , today its not too bad , but so far the pain is just as bad, severe burning in my legs and my skin as i write :-(

I was under the impression that Gabapentin is a pain killer but it isn't , the way it works is to deal with the nerve pain and so act as a bridge conductor in my brain ( scary stuff) and it doesn't seem to be working anyway . I'm beginning to think i just have to suffer as nothing seems to help ( long term anyway)

I don't know what to do next , i would appreciate comments and perhaps some info that may help me . UK rules on medication are very strict tho so anything outside the UK may not be accepted by the medical profession.

I would also like to hear from other people who suffer cfs/me or fibromyalgia , share your experiences with me 


Hugs Kira x

Tuesday 15 January 2013

Side Effects

Today my medication was upt by another tablet this morning, I had to take a sleeping tablet in the wee small hours of last nite for i was in such pain, hence the decision to upt my meds again this morning . So now i am taking 900mg of Gabapentin in the morning AND late afternoon , but only 600mg at nite .

Today has been awful for me !!!!!!!!!!!!!!!!!!

I started shaking and trembling , my heart was pumping and i felt so ill , this lasted about an hour but i had to go to bed and lay down i felt so bad. I got up after sleeping maybe an hour and a half , time to take my other meds :-( same effect and i had to go back to bed, this time i slept almost 3 hours . Got up and i'm feeling ok considering . Still very tired at the moment but at least now my heart feels normal again. Side effects are horrid but i know that they are only temporary . My pain levels today have been low and minimum , don't know if that's because i've slept most of today or if the tabs are working ;-) I will be able to judge better as the evening goes on .


Hugs Kira x



Monday 14 January 2013

struggling

Its been a little while now since i wrote my blog , over Christmas & New year i survived the festive   period but as always payback is hard and just floors me . So much pain and difficulty in even using my hands as my joints are all stiffening up and are very painful . I went to acupuncture last Tuesday but found it so very painful that i couldn't bare the needles at the bottom of my spine and i am finding that now it isn't helping me . My consultant at the hospital has decided to see me mid March to discuss hypnotherapy til which time i am not longer getting acupuncture so i have no idea how things will be for me til March . 

I have recently registered with a new surgery and i saw my new GP on Monday, she was so nice and so understanding . However unlike my last GP who said i was on the full dose of Gabapentin , my new doctor has told me that i can take another 2 tablets a day , so this is now 2 in the morning- 3 in the afternoon, and 2 at nite , i've to take them at this dose for a week then add in another one in the morning . She also said that if they don't help then we can discuss options to change over to Pregabalin ( something my other doctor just didn't discuss with me ) so i have faith in this new doctor that i am being listened to and appreciated as someone who has to deal with chronic pain 24/7 . 

Yesterday i was so down, how i wish for just one day without pain, how i wish that i could just be me for one day . I miss just being able to get dressed and go out , i miss doing normal things and i would do anything just to be independent again . There, my moan for today is out of the way now lolgiggle 

I just want to mention that my thoughts are with anyone who suffers chronic pain or disability , sometimes we are the forgotten ones and we feel that our battle goes unheard . Also our carers , they need support and someone to turn to , yet here in the UK this is an issue that just isn't focussed on enough .

hugs 

Kira x

Sunday 6 January 2013

Sometimes

Sometimes loneliness goes much deeper than just not having company. It can eat at your every being and the sadness shrouds over you like a blanket. I've heard it say that the things we lose are brought back to us in other ways, I have yet to believe this , for the things i have lost could never be replaced , they are not material things, they are things that made me the me that i was, and now i grieve for that person. I know i should look forward and i do mostly, but when you are grieving for things that have gone its very difficult to leave them behind and forget.

The me that was is no more , i am now a different person, living in a broken shell with the same heart, the same passion, the same needs and wants , the only difference is now  'they are unachievable'

Christmas was good, Hogmany was good, but the days after were demanding and now i am tired, weary and my spirit is lonely . I smile, i communicate , i try but i sometimes feel so alone

Kira x