Confused again.to get told the whole truth but not the truth?

[00Pedro]

Hi to all, I’m a newbie. Just been diagnosed with fibromyalgia. After six years.

Back ground. Ex military. Had an accident 1983. A lot of people were hurt and one fatality. I was close to being the second fatality. I could count myself lucky. A few internal organs where damaged part of the liver was removed. Lots of blood given in the transfusions.

So needless to say I’ve struggled with pain for a long time. Physical and mentally.

A few years back 2015 I again had an accident while on my bike needless to say the car won. That night in A&E I was waiting for something,then It hit me. Both these incidents happened in September just before my birthday. I was dressed in one of those wonderful smocks. I had flash backs to 83 remembering all the trauma that happened. Shortly after in 2015 I was diagnosed with Hep C1a. Now clear of the virus but have chronic liver decease. I’ve gone through and had everything diagnosed before coming out with my recent diagnosis of fibromyalgia and all the associated illnesses that it has so delightfully left me. My question is.

Having been told it only effects the central nervous system. That getting the virus has no part in my condition nor the PTSD.

What is right. Help

[AyrshireK]

Hi Pedro, you certainly have a lot going on with your health.

I can't answer much about Fibromyalgia as that isn't something I don't have a great deal of knowledge in other than I know it is an auto-immune condition that flares causing all sorts of symptoms . The NHS page on fibromyalgia might be enlightening as it says it can be triggered by illness, stress, having and operation and more. nhs.uk/conditions/Fibromyal...

Many of the symptoms of fibromyalgia can overlap with those of having liver disease and as you also have chronic liver disease your care needs to be multidisciplinary. I hope your liver disease is being monitored by a liver specialist or gastro at the least.

The BLT has a page with a patient charter detailing the level of care someone with a liver condition should expect. britishlivertrust.org.uk/li...

I hope you get appropriate care for all your conditions.

Best wishes, Katie

[00Pedro in reply to AyrshireK]

Thank you for reply I’ll check them out.

[Drhook in reply to AyrshireK]

Really feel for you, I've have fibromyalgia for the past 20 years, it really is a debilitating condition I've try every thing in the book for the pain. Been on morphine for last 10 years, that in its self has its nagitives. I was diagnosed with fatty liver but don't have any treatment for it. All I can say about the fibro is pace yourself and read as much you can about it and try to stay calm, take each day at time. I'm taking turmeric capsules at the moment and I'd say they help abit. Stay safe and big gentle hugs sent!

[Drhook in reply to Drhook]

Many thanks! I'm trying termuric as well, need to sort meds out than hopefully move on?

[Bootandall]

I am so glad you asked this as it is something I have wondered about as well, as l have compensated cirrhosis from long term Hep C also caused by blood transfusion (in 70s), plus previously diagnosed with fibromyalgia, so l can really relate to your history. Full disclosure, I have chronic depression, and also suffer from ptsd due to trauma.

How/when was your Hep C treated? I ask because there are different protocols, and l have only recently (2017) been treated. I was given the "direct-acting antiviral" drug Zepatier, but it is my understanding that there are newer ones that work too. I also had 1a which is the most common and most resistant strain, so l was given Ribivirin; did you take this as well?

The weird (and wonderful) thing is, my fibromyalgia symptoms seem to have really subsided since treatment. So l have wondered if the DAA treated the fibromyalgia, which would put a cherry on the theory that fibro is not all in a person's mind.

Hope you don't mind my asking, but my own experience is that they are separate, the ptsd and the fibro. But still think fibro might have been due to the Hep C virus, or somehow related.

[00Pedro in reply to Bootandall]

I checked out the nhs for fibromyalgia it mentioned about causes . My claim for fibromyalgia was rejected because of the time I left the forces. I’m not convince, you read one thing and told another. I’d already been diagnosed with ptsd many moons ago. They admitted to me contracting hep c whilst serving including ptsd . I think the side effects put me in hell. But having all the three things happening simultaneously I feel it’s got something to do with it. I’m not sure this is of any help to you but I wish you well. I ,like you are interested in the outcome.

[Bootandall in reply to 00Pedro]

What l meant was, my fibromyalgia symptoms seem to have subsided with the Hep C treatment.

What treatment did you get for your Help C and when? I am wanting to compare notes with you.

Oh, l also was told my treatment would be 12 weeks but it was extended to 16 weeks because the virus was "unresponsive" to treatment, it took an additional 4 weeks to lower my viral count to "undetected." I had few side effects, but l did have to be hospitalized overnight for blood in the urine, no cause ever determined, during my treatment.