Research info please!

[Madbird1]

Hi All,

I’m not even sure I have Fibromyalgia but I suspect so, lots of research and having gone from being someone who can work with 5 cracked ribs and not complain very much to winging about pain daily if not hourly! Make me believe I have it. I fell over very badly about 6 years ago and since then had major joint pain and such. I was taking lyrica but found if I took ordinary painkillers on top I couldn’t talk and so stopped taking meds all together. I spend a lot of time in Spain and find this does help but have been back in UK and unable to get steroid injections in shoulders. So in order to relieve pain again have gone back to amtriptiline which is just taking the edge off! I’m looking into doing a couple of degree level courses on nutrition and the brain to see if I can allieviate pains through food and natural means! Any research people have found would be fantastic, I know that the imbalance of chemicals in the brain haven’t been specifically recognised but anything I can do for my self and possibly others would be fantastic - I hate taking tablets and having steroid injections!

[Hazel_Angelstar Administrator FMA UK Staff]

Hi Madbird1 and a warm welcome to our community. Here you will find information support friendship and laughter too. You will find information about fibromyalgia on our main website fmauk.org

There are various ways you can manage pain that is non-medical. Pacing is key so that you do not overdo things and put yourself into a boom and bust cycle, or you end up increasing pain and flare ups.

Heat/cold, exercise and keeping active, meditation, mindfulness, distraction etc are all things that I use daily. I also get relief from using CBD products.

A good resource for pain management tips is the pain toolkit paintoolkit.org

[Madbird1 in reply to Hazel_Angelstar]

Thank you!

[YASMINTINA FMA UK Volunteer]

Welcome to the forum , I hope you find helpful information and having a read of the posts x

[Madbird1 in reply to YASMINTINA]

Thank you!

[Gooddaysagain]

Hello Madbird1,

I hope you don't have FM, as it's an incurable condition made up of baffling symptoms that seem out of control - but, congratulations on finding this site - people here are SO friendly and supportive.

In response to your request for 'research', I've been going back through my notes to see what information I discovered that might help you start your own search.

I then looked in my diary and found it's a year since I came off Tramadol (12/07/19) - HORRID stuff!

That was a month before I started taking Duloxetine and making the life-changing decision to come off all prescription medication. (They say that revolutions occur when the population starts to see things can be better!)

It's now been 5 months since I took my last 'regular' prescription drug; i.e. I now take only a couple of Codeine for specific / cause-known episodes of pain.

I feel I've got my life back. I'm still suffering from fatigue, but nothing compared to what I've suffered for the last 10 years. My diagnoses by April 2011, were:

- Osteoarthritis of the neck, with spondylosis.

- CPS with FM

- CFS/ME/SEID

- Arthritis/tendonitis of shoulders, hands, knees and feet

- Anxiety and depression

- Recurrent reactivation of EBV

- PTSD

After trying all sorts of meds, my monthly prescription at 12/07/19, was for:

- Codeine 30mg (8 per day)

- Lyrica (pregablin) 150mg (x2), 100mg (x1)

- Ibuprofen 400mg (x3 - 4) - all other anti-inflammatories caused me to fall over....

- Omeprazole (x1)

- Tramadol (2 - 6, as required, for 'breakthough pain') which didn't work, so the GP added:

- MaxiTram (2 daily)!

Tramadol made me feel REALLY ill (it's a synthetic opioid - so, not even the real stuff such as codeine).

A neighbour, who has FM, recommended Duloxetine... So, I went back to my GP to hand back the Tramadol and to request Duloxetine - but only if the GP would help me to come off Lyrica, as I'd been on it for about 8 years and didn't think it was helping.....

Duloxetine helped..... a lot...... but I suffered a double-whammy of sickness and dizzyness / disturbed sleep introducing it to my system, followed by more weeks of the same as I withdrew from the pregablin.

First positive was getting a few brain cells back.... So, I read everything I could on FM and Duloxetine. It was like learning a new language - the more fluent I became, the better quality questions I could ask. It's what I discovered over those months of evolving questions and discoveries about my conditions, that I want to pull together and share with you.

Tomorrow...... hopefully, I'll feel strong enough by then. (You'll discover that FM, CPS, ME/CFS etc, don't really let you plan too much.....)

My brain's too fogged just now because I 'allowed myself' to take 2 Codeine earlier today, and am now too tired to continue to write - but I KNOW why I hurt today (dental work changed my bite - yet again - which disturbed the damaged neck/skull 'joint' that is arthritic) and I know I can rely, now, on the Codeine reducing the pain, which it wouldn't have done a year ago.

I will be back to let you have some of the research findings and links that really helped me.

In the meantime, may I suggest that you:

a. Google 'nociception' - and read some of the papers on the difference between Pain and Nociception.

b. Start to notice the types of pain you experience, (I labelled my muscle/skeletal pain as 'real/acute', CPS pain as 'outside-in' and FM pain as 'inside-out'..... ) - get to know your pain and what sets it off.

c. Look at FM-specific research, such as on this website (the Administrators can guide you to helpful links), the latest research papers you can access for free from medical libraries (PMC, etc)

d. Look at nutritionists, such as Dr Sarah Brewer, - but read them 'with a pinch of salt', as most have something they want to sell you.

e. Improve your gut health before taking any new supplements, or they may be wasted.... FM can be helped with good nutrition, which means a good diet, well-digested and efficiently metabolised. Having progressed to FM, indicates that your metabolism is already in need of repair and recovery.

f. Treat your body as that of an extreme athlete under stress - the amount of effort, energy and pain it takes, simply to keep going with FM, means that it needs this level of support.

g. Look at the benefits of Magnesium in its different forms..... Magnesium Malate (i.e. Magnesium with Malic Acid) seems one of the best for 'muscular' FM pain relief. It was one of the first supplements I took.

You can't 'cure' FM, but I believe you can improve the quality of your life with it.

I'm going to stop writing now and am off for a few stretches and to feed the birds..... (I was 'told off' by an Administrator once before, for saying 'take a rest', when I really meant 'do something that you like that relaxes tired bones, muscles and brain cells...... )

I hope you have a better day that you thought you were going to have, and look forward to going through my notes to see what I can dig up, that might help. (Please note: CFS/ME and FM have a lot of overlapping symptoms, so some of what helped me may not be directly relevant for whatever it is you have, but I hope you'll find it useful....... )

Best wishes, dee