Cytokines (especially interleukins), fibromyalgia and treatment options?

[Feather]

Hello,

It seems to me to become more and more evident that Cytokines and specially Interleukin-8 to be a factor (for example this research shows a link ncbi.nlm.nih.gov/pubmed/175... , ncbi.nlm.nih.gov/pubmed/199... ) amongst others.

There is some evidence that exercise reduces interleukin short term but not all exercise has an effect on it. (ncbi.nlm.nih.gov/pubmed/306..., I am suspicious of this study as they didn't produce much evidence that exercise had a true positive impact on Interleukin, another PACE type research?!?) as oppose to this: ncbi.nlm.nih.gov/pubmed/298... which shows no significant improvement for resistance exercise. (Kudos to the researchers for publishing despite the negative results).

As per my pain management class, I have been meditating, exercising 20 minutes every day and maintain a healthy weight with all of my 5 a days. I am getting worse. There must be something better than treating the symptoms and not the disease.

It is interesting that my symptoms seem to fit very well with the action on the body of IL-8. What are the treatment options out there to manage cytokines? Do we as a group know of any double blind study to prove it?

(PS: it is looking more and more like they might find biomarkers for our disease. Which means less doubters, less ridiculous research such as: "human being who have fibromyalgia struggle taking their shopping upstairs", less subjective treatments, more hope for all of us).

[Tootiepie]

Thank you for the positive post. It’s reassuring that some people are taking our condition seriously and trying to work it out. Here’s to a cure xxxx

[desquinn Partner Volunteer FMAUK Trustee]

this, the boston mass study, and others are producing some evidence of cytokines being a factor but we do not know if they are causal, an effect of treatment, or long term "conditioning" or something else. We need more research. IRS in the brain is interesting and matches up perhaps with what Jared Younger was thinking about with LDN. I do not think they mentioned IL8 though.

We really need more research to establish some basics but I am not sure we are close to definitive treatments from this area or indeed being sure that it will produce results.

Regarding the exercise effect it is still interesting to see the FIQ scores reducing irrespective of whether cytokines played a part. The second negative study did not indicate any info on patient response like FIQ scores but was only interested in correlation.

Activity does have a lot of evidence with fibro patients. Eular / Cochrane has information on this.

[Feather in reply to desquinn]

Interesting comment:

1) research on Cytokines/IL is still very new and the lack of want from the scientific community to establish a link vs just proving FM people, or people with "conditions" are just not looking after themselves properly is astounding. I read so much pseudo science when I embarked on this journey, it's scary. (from the alternative therapies, to pfizer sponsored research, social care, psychologist, orthodontists ?!?, some old man who decided to go on a very long rant about how people are not walking anymore and should ditch their cars,...) The pseudo science scientist are referenced more than a simple double blind study.

Could we just drop the "people are lazy" science? There are those who try to defend us and there are those who will destroy us.

2) Page 8 of the study looks at FIQ and found that there was a decrease of 15.5 points for the exercise group Vs 19.9 for the control group.

When I started, I only wanted to prove to myself that my fear about using anti-convulsant like gabapentin and pregabalin to manage my conditions were unfounded. Alas, I couldn't find the reassurance I needed.

[desquinn Partner Volunteer FMAUK Trustee in reply to Feather]

I did not see the link to the document read most of it now. Looks like they are looking at population selection as a possible issue for explaining some of the results.

I would not agree with your characterisation of that being all they are doing, There is a fair bit of research going on in many different areas looking at treatment options, causation, and generally understanding chronic pain as well. Resources is always going to be an issue that limits speed of change or options pursued.

[Feather in reply to desquinn]

(First, I want to thank you for your feedback, nice to be reminded it's not all doom and gloom). My statement is not about all researchers but some which hurts to read. It's hard to see that fibro is not always treated as seriously by some. And I mean some, then others follow them. I might be wrong, but it feels like that when you read this.

[bobbybobb in reply to Feather]

Actually the research is not that new, There are many pieces on the actions of Cytokines and Interleukin and the role it plays in disease in autoimmune and autoinflammatory disease. Also Interleukin-1 looks interesting. I've not yet looked specifically at the piece of research you have posted but I will have a read through it tomorrow. x

[Feather in reply to bobbybobb]

Agree, first bit of research linking Cytokine to FM was 30 years ago. That's according to pubmed( ncbi.nlm.nih.gov/pubmed/ ), which I trust.

[bobbybobb in reply to Feather]

I had a read of the articles from your original post. I'm no scientist but when reading, Plasma Cytokine levels in Fibro, 15 weeks of progressive resistence. Something run through my mind. The IL-1B was lower. Interleukin-1 consists of three related polypeptides. Two have a broad spectrum of beneficial and harmful biological actions. The third is Interleukin-1-receptor antagonist. Interleukin-1 can stimulate the production of Prostaglandins, leading to a decrease in the pain threshold. So, why would it be lower in our group, when our pain threshold is high by the sheer nature of Fibro. So it confused me somewhat. I don't think the researchers Take into consideration that even on a fMRI our brains only respond to pain at much higher levels than a healthy group. It was very interesting thanks for sharing.x

[bobbybobb in reply to bobbybobb]

Another thing I thought of. could it be that people with Fibro may have a trait of having low interleukin-1 generally.

[Feather in reply to bobbybobb]

I have barely any feelings in my hands and feet anymore, so I guess it would take a lot more stimuli for me to get the same sensation than most.

[Entela15]

I find that this condition has a mind of it's on, waxes and wanes just like that despite drugs you take. Keep looking after yourself even when symptoms are flared. With time they will calm down. Medication won't help you with the pain. It's done so you can relax and think positive even when in pain.

[opalfruits]

Does anyone have any good further info regarding the possibility of cervical nerve pinching and /or PC3 involvement in fibromyalgia?

I spent an interesting few hours reading this from Paul Ingram's perspective:

painscience.com/articles/fi...

which did a nice job of gathering complementary and opposing evidence for alternative theories. But clearly is only one man's summary of it all.

[Feather in reply to opalfruits]

Nice read, I think they will there is more than 1 type of fibromyalgia (like there is more than 2 types of diabetes). Some secondary to obesity, nerve disorders, or other disease, others being primary fibromyalgia with no known cause.

[bobbybobb in reply to opalfruits]

I think It's coincidental. I just read the article. Why I say this, is because I have problems with the cervical spine. I have a problem with my arm that they thought might have been caused by, pinched nerves in my neck. I had no pinched nerves. What I'm saying is, if that's a theory, It's not a theory that would be true for me. People who do suffer with myelopathy could obviously have symptoms that resemble that of Fibro but I don't think it has any involvement from my personal experience that is. x

[Ihatetesco]

This is very interesting. I am researching the vagus nerve. Well I say rearching, I am googling research papers. I have got a bit fanatic about it and have even started to makey own vagus nerve stimulator. I looked on the Web and they where stupid expensive. I think my friends believe that I have lost the plot lol. However I have managed to get a few people to try them out when I have them ready to see if they improve their health. I have noticed that as we get older there is always something wrong with somebody.

If you are interested in what I have fou d you can message me directly so as not to appear mental to everyone on the site

[Feather in reply to Ihatetesco]

Yes I looked at the vagus nerve too but then got hopeful on the cytokines after a while. Although some research are saying that electrical stimulation seem to have an effect on Cytokines.

[Ihatetesco in reply to Feather]

sciencedirect.com/science/a...

Not sure if that worked.. But it's a paper.. Basically I just googled Cytokines and vagus nerve and the vagus nerve has a direct link the the thingys... From what I can pieace together this is the science behind why meditation, mindfulness and chanting is good for your health... It used to drive me mad when I used to ask for help and the doc would say... 'Have you tried meditation' .... I was like stick that up your wazoo with your hippy rubbish... Give me Drugs.... Can't you see I am delerious with pain.. BUT the doctor was right, she just didn't know why it helped in order to explain the science bit.

[bobbybobb in reply to Ihatetesco]

I've read some stuff on this and it's also very interesting, there is so much to read I end up with brain ache sometimes but it's all so interesting when you are looking for something that directly affects you.