Fibromyalgia Action UK
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24 year old son in need of help

My son has just be diagnosed with FM - has been having bad back pain since the age of 16. He has gone from an active young man to sitting at home in terrible pain, depressed and extremely anxious. He has been on co-codymol for around 2 months (highest dose)and is worried he is becoming addicted. Doc has prescribed pregabalin but is worried about side affects. He is experiencing new symptoms weekly and would like to know if there are any FM specialist in the South East. What medications people find help, although I know everyone reacts differently. Also are there many males that suffer from this debilitating condition? Any advice would be grately appreciated thank you all

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Be real carefull with the pregabiline it works well but has some really knasty effects and coming of it is horrible I have been on many different painkillers and I found that the hardest to come of you can look at Cbd not a lot of people will even try it because they just think it's weed but you don't get high on it but it is expense try and go se your local pain clinic and see if there try acupuncture or hydropherphy any think got to be better than being on painkillers for life get him to join this site and ask people some of the things that are bothering him that might help hope all works out and you get some good advise sorry I have only just joined and I am looking for the answers my self I am 40 years old and my life just stopped I hate it but I will get a life back I am for sure just don't no how take care from Mark x

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I was forty when it happened to me....I could hardly walk at all some days but it kinda went away....diet and reflexology & aromatherapy. I became an Aromatherapist but I take treatments one a week.....I'd be floored without it.

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Very sorry to hear your son is suffering. The hardest part for me was coming to term with the condition for this I had CBT therapy got about 14 months. This helped me loads and got my mind set different. I’m on 150mg sertraline for helping me sleep and with the anxiety and depression side of the illness. It helps a little bit personally overtime I think it loses its effect though it still helps a bit with sleep. Been through muscle massage and this was ok but no real long term effects either but can help for a week or two. Epsom salt baths or baths in general can help with muscle aches. Have used a variety of muscle rubs on my body but the best I find is deep heat or the red tiger balm again you don’t get relief all the time but some times loads of relief. I don’t like taking medication so stick to only taking paracetamol as and when I need it. I’m also under going acupuncture and again this has helped a little bit not loads. Hydrotherapy was really good and then I progressed to light gym work which helped a little but not loads. After acupuncture I’m going to see a chiropractor to see if that helps me. I have a tens machine too which can help muscle pains. I have a heated blanket and heat pads for the winter and cool pads for the summer both help a little. I’m keen to try cbd oil but my partner is dubious at present. If you need to ask me anything feel free x

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Hi Steve I am Mark and wrote the comment before you was just seeing how long you had lived with your disabiltyes I have only just been told about mine and they have said so many different things I not got to much faith in the hole system this site has helped just to speak to other people going thro daily pain and how they deal with it you give good advise I was a weed smoker for many years but I don't want that any more I don't want to get high but it masked the pain massively I done a load of research on the Cbd and so many people really rate it I want to try it but just could not afford it at the min but will wen I get some more money wen I do I let you no what I think but at the min I try anything to get a bit of a life back I am to young for this to be it just went out and tried to have a bit of a walk and spun me out and now feel shattered do you have ringing of the ears with your fibro its one of the things that drives me nuts did not no if any one else gets it if I can ever help in any other way send me a message and I get back to u there a lot of woman with this but don't think there so many men or maybe us men not so good about talking about it take care mate hope things pick up and you have more good days than bad

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Good evening Mark had official diagnosis 2 years ago after numerous tests all can’t bavk clear. Eventually had to give up work in January this year after struggling on for a while. My partner is not keen on m me using CBD oil but some good research has shown you can get some good quality ones that have helped people so obviously I’m keen for any sort of relief without pumping myself full of prescription meds as that’s not for me. When I first had fibromyalgia come on real bad I used to get the spun out feeling often with walking like I was just going to flake out and my body wasn’t really my own. Only occasionally ringing of the ears. Headaches and muscle pain along with fatigue are my worst symptoms. There are a few other men on here that I chat to but your right some may not feel it manly to open up to what there going through. Anyway hope your as well as can be take care Steve

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Thanks Steve think this site great to try and help us struggling and to deal with it and nice to see another bloke trying to help people with his experience not only have I got fibro they said I eds and want me to get tested for ms or me they said the me most likely but feed up of being pulled and poked around just want a life back bet your gutted you had to give up work I no mine a bit different but I miss walking and miss the most driven my motor bike but I am building to get back on the road how you been treated on benefits they caused me so many problems and in an endless war wth them that drives me nuts more than anything hope you still have a bit of a life you said you got a misses I have stayed out of a realaship because don't feel I have a lot to offer at this point and don't want a career and that's what there end being I no it seems I have a lot of self pity but have not just want to start liven again and don't no how I have days and days were I can't get out of bed my house has become a mess and I eat rubbish because can't cook or clean the kitchen to do so but I am determined to not give up I love traveling and got a lot more of the world to see I am waiting to see if I get pip and just had to feel all forms out again for esa should no more in next couple weeks then I can make my next plans on rebuilding my life then I got a couple big operations to come 1 on my neck and 1 haveing my jaw rebuilt but so no end yet but I have also not given up thanks for taking the time to speak to me on here sorry if I have gone on I try be more postive if we speak again take care mate and the best of luck

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No problem at all best of luck to you

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Hi Mark,

Been reading your words... It's hit a chord with me. Please don't even dare think you are full of self pity! You are not. Like so many brave people on this site, you are well and truly up against it.

Traditionally we women are supposed to be Domestic Divas, in charge of our tidy homes! I understand just looking at the Hoover and instead seeing an instrument of torture... Things can get on top of us and it easily becomes a slippery slope...

I found it took me years to get over the 'bereavement' aspect of Fibromyalgia. We mourn the loss of the active, achieving, results driven person that were once were! The word "pace" yourself constantly ringing in my ears was also a 4 letter swear word.. One of the hardest things I found was to be kind to myself and gain acceptance of this vile illnesses. I started reading philosophy, and in particular the oriental teachings of the Tao. It helped me find a certain amount of inner peace.

Instead I transformed my anger into action, in the form of observation, logic and research.

Two of the basic requirements of my professional training was acute observation and deduction.

I personally have chosen not to keep rigid labels for the identity of my illness because it's unrealistic! We cannot visualise our 'unwellness' in such black and white terms!! There are so many variations to consider, different genetics, different environments, differing coping mechanisms for the supreme killer called Stress, different individual nutrition levels...the list is infinite.

I have taken my thinking back to the beginning... I have chosen to base my approach to healing upon Hippocrates advice from over 2,000 years ago, 'that all disease starts in the gut'. To those who do not understand this statement, it may sound fanciful! But it's not.

The correct function of our Immune System is the be all and end all of our entire healthy existence.

Given that 80% of our immune system is house in the gut, this is the place to start.

We need No.1 healthy gut flora, in other words, beneficial bacteria living in our gut.

This is achieved through the right diet.

Optimum gut function allows us to extract maximum vitamins etc from the food we eat. We also have to eat well.

Let us just take a guess and assume that either because your diet is vitamin deficient, or because your gut bacteria are not what they should be...your body's capacity for adequate nutritional vitamin intake is below par.

Machinery that functions 24x7 needs constant surveillance and maintenance, as well as down time to check parts! We are no different.

I am coeliac. My gut flora is severely challenged. My intestinal villi are probably non existent..

My back pain over the years has been crippling. I caught Scarlet Fever at 15 and had it very badly. The lower lumber pain I had at kidney height was so severe, I was unable to do games at school for over a year! I have had back issues on and off ever since...

However, I recently watched the Docu-series by Dr Mark Human which was superb. In one of the episodes high doses of Omega 3 fish oil were explored with evidence to back it up..

I decided last month to take 4 tablets of 1,000mg per day.

Within a matter of days I felt serious improvement!!! The benefits have been terrific. I highly recommend it. Tesco's do a good brand under their own label.

What I want to say is, improve your situation with your diet; what you eat, how you prepare it and ALSO supplement with Vitamin C, Vitamin D3, Magnesium, eat 2 to 3 Brasil nuts a day for the natural Selenium, vitamin B complex, a few prunes a day for the Boron, x4 tablets (1,000mg format) Omega 3 Fish oil....and keep a diary to chart your improvements!

I don't know where you live, but is there somebody you could get help from with a little housework, to help get your home back on track? Maybe your local church might be able to help?

If you want help with recipes food regimen etc, just ask and I will do my best to help you.

And I'm curious, what's your motorcycle? I can't think of many things that smell as sweet as sawdust and motorcycle gear box oil! It's a positive aroma to the senses! Anybody who has not had the chance to inhale it does not know what they are missing!! Hold on to that smell and that image!😎

You can do it.

Baby steps. A day at a time..

Be kind to yourself. Approach this illness through Nutrition and supplements. Get out in the sun.. Simple steps and everything will follow. Besides, any chap with a sweet running motorcycle has a lot to offer!

Plenty of people on this excellent forum will help you out. You are not alone.

Any advice, questions, just ask.

Poppy the 🐈

😃

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Thank you so much only just see your reply not been on here for a few days you speak so much truth and would like to learn more I am algegic to fish so can't have the omega 3 at the min I feel so run down I meet someone else that talk about Tao and it seemed good I got try and gain the postivey back but don't no how I have just give my bike to a mate it had sat out in car park all winter and was rusting away it was a bandit 600 but I have been looking at geting a new one to give me some get up and go going to ask the landlord if he let me put a shed out in car park so can keep it in there I live on the Isle of Wight and sure the people at local churches would help but I find religion not for me was made to go as a child and put me of lol I am not against any one else what they believe 1 of my good friends in Thailand was a Budest monk and another friend was a Muslim think each to there own I try to see the good in people but tend to get let down so just given up a bit I want to get back traveling I want to get a bike sorted and hit the road and not look back I am waiting to see if the benefits help me out but not holding my breath they treated me so poorly it sounds said and don't laugh but I use to metal dectect and done really well of it I want to get on the bike and do that where ever I end up never been happier than wen living out of a rucksack I am not been one for haveing loads of stuff and since I got attack 5 years ago and hit in the face with a fire extinguisher I got loads of crap that's another thing holding me back I still got to go thro more operation so find it hard to be able to move on but like you said small steps write diet and I get there it's help speaking to people like your self and seeing your not the only one haveing a hard time I no what I have to do to change the first big thing was comeing of the most of the painkillers they had me on loads so next step is to get fit and start eating healthy again and most of all getting back on the road lol let you no wen bye a new bike and what I go for then the worlds mine again there taken everything from me but never take my smile sorry gone on hope not bored you to much sorry about spelling take care and stay incontact no you can teach me a lot from what you say keep up the good work and thanks again x

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Hi Mark,

You have not bored me, far from it. From what you have explained your current status comes as no surprise given what you have further explained. You certainly have had a great deal to contend with...

With regard to your benefits situation, you must not give up, because things are made as difficult as possible, deliberately, in order to put everybody off. It's the primary angle that gets put forward as standard practice.

If you need backup to cope with dealing with the benefits people go to your local Citizens Advice Bureau. I have always found them very helpful.

The Book called "Zen and the Art of Motorcycle Maintenance" was rejected for publication over 100 times...and it became a record all time bestseller. So don't give in.

I am sorry to hear that you are fish intolerant. Is it all fish, or just commercially prepared shrimp? I ask because I cannot tolerate shrimp that has been gased with the preservative mono sulphite.

If it is all fish you cannot cope with then you must find an alternative source of Omega 3.

I searched and came up with this site. Check it out...this way you can read up on it.

shop.lucybee.com/collection...

After your attack I hope your GP organised you some counseling or therapy? I would say from reading between the lines that you sound like you could even have PTSD after your attack?

I understand what you are saying about 'Church', though I think you may find just because you ask for help from your local vicar, it does not mean they will be Bible bashers!! LOl😁😁...

You just need a little practical help to get back on your feet right now.. Keep the faith, reach out to people, and good people will help you without wanting anything in return...just like you've reached out here.

Let me think about a 'menu program' for you. Simple, easy to prepare food that will be nutritious for you.

Do you have any other food allergies?

I have a list of 17 things I can't eat, so I know how seriously difficult it can be to eat, let alone survive.

I will stay in touch and pass on any helpful info I can think of that may be of help to you.

Take Care,

Poppy 🐱

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Hi so sorry your son has fibromyalgia I am 61 and have been diagnosed for 2 years but have known I have had it for about 6 years I have been on many different drugs including pregabalin - which gave me awful side effects including weight gain - I have found (for me) the best route is no drugs except the odd painkiller and the odd half a sleeping tablet - I have gone to a extremely good diet -. No wheat, gluten, sugar no process foods - I eat veg fish. White meat , a little fruit nuts and seeds. I go aqua at least twice a week, and swim (water is great). I see my friends quite often and I try and do things I love -. Please don't let your son - sit too long - you need to get moving -. And a positive attitude works wonders I know it hard and I have some bad days but I am having a decent life - also I had to change my doctor's many times to get a understanding one - I wish you both the best any questions please just ask. I am in Suffolk. Neese.

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Really pleased your getting on with your life and you sound real postive fair play its what I got to do now my first big thing was coming of most of the horrible painkillers they had me on and I have done that now my next step is trying to get a life back and my fitness and speaking to people like your self defo helps I no I got to change my diet I was just so bad I could not cook nor clean I could not do anything my body went it to complet shut down where I was fitting for over 12 hours at a time every part of my body was in full spasm the only way I have been able to stop this is laying on my back 24 hours a day I hate telly but that's all I had so you have to get use to it I went from 100 miles hour down to zero but small steps and postive thinking and I bounce back nice to see your postivey keep up the good work hope you have more good days than bad take care mate

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Take care - neese

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There are no fibromyalgia specialists.

Most consultants discharge back to GP after diagnosis

I tried pregabalin and gabapentin but had awful side effects.

I take paracetamol 4 times a day and ibuprofen 3 times a day without fail topped up with codeine as required (usually at bedtime) and 25mg of amytriptilyne about 7pm it helps me sleep and eases the nerve pain.

There is no one thing that works on its own, it is very much a hit it from all sides approach. The following are part of my routine. It allows me to complete a degree, work twice a week as a sports therapist and three evenings a week as a youth leader.

pacing is vital

gentle strength work (Pilates and resistance bands)

sports Massage to release tight muscles

CBD oil (2 drops 3 times a day if 10g/ml), Magnesium Supplements

D-ribose supplements

Light therapy (SAD Lamp) each morning

Swimming and aqua therapy helps too if you can find a pool that keeps the water at a comfortable temperature unfortunately my local pool is too cold.

The anxiety and depression needs addressing as a separate issue or it will hamper any progress with the fibromyalgia, unfortunately it is too often lumped in with fibromyalgia and not treated as proactively as it should be.

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Can recommend CBD oil, look at CBD Brothers online. You need a decent strength for it to be effective. I find the blue one works well and it is just pain killing.

If you look online for rheumatologists in your area you'll find many who work for the NHS and do private work. Look at their profiles on private work as their specialisms vary. You might be able to ask your GP to refer you to a particular dr on the NHS, depends a lot on GP but it's worth a try.

I paid privately to see a rheumatologist who'd written papers on fibro and lectured on it. It was about £220 but really she just prodded me, told me I had fibro & wrote to my GP. Gave me a leaflet and told me to look online for information. There was no treatment included.

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Hi June, sorry to hear about your son, I empathies and agree with Mark, Steve, Ladyjoro and all the other great advice on this and other posts. I've been diagnosed with Fibro (and 2 other types of arthritis, one possibly needing surgery), about 3 weeks ago, which has really just put a name and made sense of a set of symptoms. I'm a 44 year of Male, reasonably sporty and otherwise healthy, but my issues are compounded by a pre-existing sleep disorder and an iliopsoas bursitis (hip to spine muscle/ tendon bone rub issue) and Rotator cuff should thing!. Both are healing very slowly with sometimes no or at best 3-4 hours Alfa sleep often split, No Delta sleep it feels like, (the stage 3,4, & 5 refreshing sleep when the body does 80% of its repairs). Oh and an old injury = slipped disc/ draped nerve.

Cognitive Behaviour Management I think would be key for your son at his age - a positive attitude and deep insight into how FM effects him personally is vital. A positive and pragmatic view combined with the great mental, physical and social tips on this sight, with minimal medication (pain and muscle relaxant maybe), might hopefully enable your son to have a good quality of life with FM. Acupuncture, chiro, deep tissue/ thai massage and mild medication all help me short term, but FM also seems to mutate which is challenging and fun!

Anyway all the very best

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Where do you and your son live? I am a sufferer and have been for twenty years but it comes and goes.......

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Hi there we live in Berkshire

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Hi June56 - I am in the same boat as your son. I'm 23 and have had back/joint problems since I was a child and finally diagnosed with fibromyalgia earlier this year. I'm on Duloxetine, Pregabalin and cocodamol/paracetamol/ibuprofen. Im also in the South of England.

There are lots of differing opinions on what to do/not to do, I think it's mainly trial and error as what works for one person doesn't for another. I would say go to the GP as soon as possible and if they aren't receptive, change your GP.

I would argue that the hardest thing is accepting the diagnosis and that his life has now changed as a result, but it doesn't mean his life is over and there is so so much support out there (on here as an example!).

Please feel free to message me and I hope he improves very soon. My thoughts are with you bothxx

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Hi thank you so much for your kind and reassuring words. So sorry to hear that you are also suffering at such a young age. How have you found the Pregabalin, does it help with the FB have been told it is also good for anxiety?

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Hi June56 - I've only recently started the pregabalin but I've had no adverse effects so far. I was told it takes around 2 weeks or so to kick in, but I have heard it is really helpful. :) Xx

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Many thanks for the info can you tell me what dose of Pregabalin you have started on?

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Hi, I'm on 150mg (50mg x 3 a day)

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Hi hope you don’t mind me messaging you again as just wondering how you are getting on with the pregabalin - hope things are improving? Many thanks

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Hi June56 - you are free to message me any time you like! :) It's changed the pain a bit, not really reduced it but changed the way it feels if that makes any sense? How is your son progressing with the medication? I am now on 600mg a day just for your information x

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Hi and many thanks for the reply. Sorry to hear they are not helping more with the pain. Son has not taken them yet as is very anxious about the side affects but I am trying to persuade him. Did you have any side affects? Are you on any other meds? Sorry for all the questions just need a bit I reassurance. Thanks again

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Hi, honestly it's not a problem whatsoever! I have had pretty much no side effects whatsoever. I've been told it does take a while to properly kick in so I am holding out hope! :)

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Hi many thanks for info, son has been advised to take 75mg x twice a day but may ask to start off at a lower dose. Hope it helps you and would appreciate you keeping me up to date thanks

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Hi June

I was 33 when I was diagnosed, after years of being shuttled between Hospital Consultants who could not work out why I had pain. 90% of sufferers are women, so I am one of the other 10%, like your son.

In 1996 I tried Gabapentin. Gabapentin and Pregabalin are the same family of drug. I got a lot of relief from it but over time, needed more and more of it to get the same effect. I was on 2700mg which was the maximum daily dose in 2004 when a new Consultant suggested Pregabalin because you take far less of it to get the same relief. I found it was fantastic. I took 75mg twice a day. Later that went up to 150mg twice a day, coupled with Duloxetine from 2008, which is licensed for Fibromyalgia. The two together work well for me. A lot of women report a lot of side effects but the only effect I had, was an increase in appetite, so you have to be careful what you eat, or you put on weight. When I have flare-ups I take Dihydrocodeine as well, but only for a few days.

I worked full-time until I was 55. So your son should not fear Fibromyalgia. He will have to learn to live with it, but there are treatments that deal with symptoms and I hope he can get on with living his life.

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Hi thank you so much for your encouraging message and am pleased that the meds are working for you. My son is due to start the pregabalin 25mg x 3 times a day but is still a little hesitant. Everyday he is in pain but I guess that’s the ‘nature of the beast’. I just need to get him thinking more positively and your post has definitely helped so thank you again!

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