How did you find your diagnosis?

[Rosiea1]

Having looked at the symptoms and comments, I strongly feel my auntie has this Fibromyalgia.

She’s been offered talking therapy but she’s in so much pain constantly she can’t sit still. She suffers with stress and anxiety and we try numb it with walks and keeping busy but she’s but she feels like a walking zombie that’s gone mad. She can’t engage with conversation, her energy is so taken up by this sensation all over her body.

She said it feels like biting?

Can anyone relate? And she has been on Pregablin but really suffered from side affects. Can anybody recommend a med? She is on anti-depressants but we can’t find a suitable med for the pain she’s having

[Smoggie1]

I'm sad to say it depends on the docs and other help she can get from.ive had it 16yrs and medication I had then to help diclafenic is not allowed now as bad for you. Naproxin is an alternative but I am allergic.i have ectorcoxib and co dydramol bit I have just seen specialist at pain clinic and he say all those and pre gabapentine all do not stop pain..your body gets used to them .plus side effects and causes problems in long run for other organs in body..so he wants me off them and only when chronic..he said to try CBD oil from Holland and Barrett I have all week but not touching pain it is 5ml strength.i am on 30ml amytrypline at night as I cannot sleep and it is helping a bit.the specialist said only to use tablets twice a week to preserve their usefulness...what he suggests is attending seminars with an occupational therapist...he suggests non medical ways of improving health...they don't seem to realise if you can get rid of most of pain and pace yourself it's easier to cope.he said n

My appointment with rheumatologist is gonna be waste of time as I have osteoarthritis and not rheumatoid arthritis...a bone specialist I saw in emergency in April said the fibromyalgia is magnifying the pain from arthritis and baker's cyst.. I wish your aunt well.good luck as I have found they just don't seem to care to find something to help.my sister is on LDN but gets it by private prescription through her specialist but it was a private specialist she paid to go see she says it helps with all her pains and that is all she takes appart from inhaler if asthma bad.

[Echoblue]

Hi, how lovely that you are trying to help your auntie.

For a while, about 8 years ago, I took Tramadol with paracetamol and the combination worked well (the paracetamol enhances effect of Tramadol apparently).

I have for some years now managed just with Amitriptyline for the fibro and trigeminal neuralgia and I also take regular turmeric. I have to say that turmeric was the greatest discovery for me. I had to stop it for a while before surgery on my elbow and felt a real decline in my symptoms while I was off it. Quite a number of people I know with inflammatory conditions have also benefitted. I also add it into my diet when I can. Could be worth a try. I have used a variety of different brands over the years and to be fair, don’t really value one much more over any other. Good luck to her and I am sure she really appreciates your support, as being listened to as well as patience are wonderful for those with fibro x

[Hidden]

An old war nurse found my symptoms in a 1995 magazine when the French had started to look into Fibro. They still have no answers as yet in 2020. At this rate you will have a cure in 3020. Fact is learn to live with it!

That is so painful to say to anyone, but... Your gonna hear it a lot if your mother does not accept accept it. The best help out there is a well balanced Mediterranean diet and good exercise every day. If it goes ... great! One off the list... If it doesn't she must do what we do "Live with it" and never complain because that leads to so much heartache no matter how much pain your in. Nobody out there cares except us Fibro family because we know what it's like!

Your family is now about to suffer like all our families have. It's a hell on Earth. And I'm being very, very positive about this!

My best wishes to her and your family.

I hated saying every word of that! It's horrible but, so true!

healthunlocked.com/fibromya.......

[Midori]

Fibro is the poor relation when it comes to Medical Health. Many doctors still consider it a Psychological condition, because it mimics other conditions.

It has a great deal in common with ME/CFS and also MS. We who suffer from it know it isn't 'all in our minds', but the first recourse is always antidepressants.

GPs don't seem to realise that the pain and stiffness, with the IBS many of us get, along with their attitudes, is what gives us the depression, not the other way around, and that, for me at least, antidepressants do NOT help.

I was diagnosed with Fibro after more than twenty years, at 60. I'm now 72. I have found that over the years I have learned to tell the inner voice that says it hurts all over that it is not as bad as it believes, to the point where I have now managed to come off all my meds, except a very occasional dose of CoDydramol, when my knackered knee is really kicking my butt. Mostly I take Ibuprofen, which I buy over the counter, along with Vitamin D and C, and a couple of others for joint health. (Sorry about the Italics, but it happens sometimes on here.)

I have found that positive thinking and reinforcement have helped a lot, and the reduction of stress also. I have difficulty walking and use a rollator (I also have a wheelchair which lurks in the garage, and gets to see the light of day only when I'm really in trouble with the knee.

My son (who also is showing signs of Fibro,) is my carer.

I hope some of this is helpful.

Cheers, Midori

[bookish]

Hi. There are lots of reasons suggested about why we get Fibro and it seems for most as if it is a combination. The two that have made the most sense to me are Small Fibre Neuropathy and COMT gene variants.

About 50% of people diagnosed with Fibro are believed to actually have Small Fibre (Poly)Neuropathy and the best place to begin to find out about that is Dr Anne Louise Oaklander. When you get chance, search Oaklander on YouTube for 'Small Fibers, Big Pain' (Radcliffe). A Neurologist might be worth a try, if it makes sense to you. I started off with Rheumatology for Fibro diagnosis but Neurology diagnosed SFN and have been more use (to me, anyway).

COMT controls an enzyme responsible for breakdown of neurotransmitters (dopamine, adrenaline and noradrenaline), and oestrogen. If COMT is too slow, you can end up with too much of those which can cause a variety of symptoms - anxiety being one of them, pain (like Fibro) being another, and you can be badly affected by stress. It has knock on effects elsewhere, like on methylation (MTHFR) so could affect folate cycle. How is your aunt's B12? It may be that it is not getting into the cells where she needs it. (Don't supplement B12 or folate before proper testing as you will skew the results). (COMT being too fast also can cause health issues).

You need to look carefully at all of her symptoms, how they have changed over time, and any triggers that you've noticed. I don't know how old your aunt is but bear in mind that oestrogen is involved and hormone changes throw a spanner into all autoimmune and pain conditions. There are things that you can do to help all of the above. Remember with COMT and MTHFR we are talking genes - the genetic variant or SNP still has to express before it may affect you, and some variants do not appear to have any detrimental effects on our health. SNPs in combination may result in disease states in some circumstances, so you don't treat the SNP, you look at the health issues that are resulting and try to help those. Hope that makes sense!

I have Fibro, SFN and COMT (plus others).

Best wishes to you both

[bluteco]

Hello, I wanted to ask, if anyone with fibromyalgia has had a high platelet count?