Help, need advice : Hi, I've just been... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Help, need advice

Nooby
Nooby

Hi, I've just been diagnosed with fm, which explains a lot over the years, but I've struggled for years with severe pain and tiredness. I've been started on 75mg pregabalin, paracetamol, naproxen and codeine, as yet, I don't feel any benefit. I've been told they can help treat some symptoms, but not all. They suggested exercise, but just too tired and too painful at the mo. Could anyone tell me if there is anything I can do to help ease the pains and tiredness? I did try cbd 3% oil, but literally no difference! I'm literally willing to try anything to ease these symptoms as I struggle to leave the house now...

70 Replies
oldestnewest

Hi Nooby pregabalin is very good but you're taking a small dose. Ask your doc to increase it to 450 per day. You will feel the difference. It worked for me. Try not to take the naproxen every day as it's quite heavy on the organs. Good luck.

Nooby
Nooby
in reply to Entela15

Hi Entela15, thank you for info, I will get back on to Drs as it is a real struggle at the mo, and 75mg really doesn't do anything, I will see about getting dose put up. But thank you for the naproxen advice, I didn't realise it was so bad!!

I'm not surprised CBD at 3% didn't help, the minimum to help Fibro is 10% and even then it needs to be the correct quality. I use a really good one that's not too expensive and it's helping me, I'm more relaxed and anxiety has gone.

Nooby
Nooby
in reply to Zoonie

Hi Zoonie, I was told to try the 3% by a friend, but when it did nothing, I kindve just guessed the others wouldn't work either. So if I was to try the 10%, where would i get it from as i don't get much money each week, so ones I've seen, are too expensive!! I too also have bad anxiety, so if it helps with that too, that really would be great!

Zoonie
Zoonie
in reply to Nooby

The one I buy costs just over £40 but will last you about a month, if that could work for you let me know and I will pm you a link to it.

Nooby
Nooby
in reply to Zoonie

That would be great if you could, anything that might help, is definitely worth trying.

Zoonie
Zoonie
in reply to Nooby

On it right away!

Merlio18
Merlio18
in reply to Zoonie

Hi

I am interested to know the link also for the cbd please can you pm me as i also have fibro and ME plus auto immune thyroid and I am allergic to paracetamol and the gp wont give me pregabalin they sent me to a pain specialist as i wanted to try ldn and they were absoluteley ridiculous told me i should try mindfulness and they refused to prescribe me any pain relief so I would like to look into the 10% cbd oil.

Can i ask how did you get prescribed all those meds?? Was it a gp or specialist ?

Zoonie
Zoonie
in reply to Merlio18

Mine was through my GP, but the pain clinic did suggest some of them that I’ve tried. My aim at the moment is to get off prescription meds because they don’t work well enough for me to accept the risks of dependence and withdrawal symptoms. My advice is to try as many natural ways to reduce pain as you can, they work better. The problem with most things is that they treat the symptoms not the cause, since we don’t really know the cause is natural help is the least damaging.

I’ll send you a link to the cbd I use, it’s a 1200/10 one of very high quality for the price.

AlexGiger
AlexGiger
in reply to Zoonie

Me too please xXx

Zoonie
Zoonie
in reply to AlexGiger

Ok no probs!

Could I have the link please, it’d be highly appreciated

Sure, no problem!

Janiceanne
Janiceanne
in reply to Zoonie

Hi I am new to this site and am anxious to get some decent10% cbd oil for my pain as it is really getting me down. I am unsure of buying it on the Internet as I am not sure what I am buying.

I would be very grateful if you could send me the link to what you use and where to get it

Dee6
Dee6
in reply to Zoonie

Me too please x

Zoonie
Zoonie
in reply to Dee6

Done!

LSHARPER
LSHARPER
in reply to Zoonie

Hi zoonie could you please send me the link to what cvs oil you are using much appreciated

Zoonie
Zoonie
in reply to LSHARPER

Done!

Nickson75
Nickson75
in reply to Zoonie

Could I have the link as well please xx

Zoonie
Zoonie
in reply to Nickson75

Done

Nickson75
Nickson75
in reply to Zoonie

Thankyou xx

Believe it or not, diet has a huge impact on pain.

I know you are thinking yeah right!! However I thought the same a few years back. So I stop and had a good talk with myself.

So I came up with a plan of action.

Everything that I was eating I wait 20 mins to see if my pain would get worse.

My finding as follows.

100% No suger.

No bread.

No milk.

Change to soya milk.

No cheese

No biscuits

Drinks lots of water.

Do eat as much as you like vegs and fruit.

Fish. Try to avold other meats.

Jacket potatoes

Careful on what you put on it.

Everything none suger

They have suger free biscuits now very yummy.

Do this for two weeks and the pain will be cut by half.

Enough for you to do things for yourself .. x

I agree with diet but depends on whats triggering the pain also, cutting out nightshades too as I notice a difference when I cut out certain foods but I also think the weather is a trigger for me aswell.

Nooby
Nooby
in reply to Merlio18

I can definitely agree with the weather!! I dread rain or damp, but then, too hot, makes pains more intense!?!

Jbluek
Jbluek
in reply to Freespirit65

This is interesting.

I don’t eat any meat or dairy but do eat a lot of bread and sugar

Yep sugar is an enemy. I can eat bread but only sourdough I can eat sugar but very little. Fresh non fatty foods dairy is no good.

Nooby
Nooby
in reply to Freespirit65

Thank you, I will give it a try, as definitely, didn't think food would have any impact on pain! And yes, I do eat quite a bit of sugar and cheese (my guilty pleasure!), but only drink skimmed milk, so do you think the milk would still be ok, or change completely to soya?

Have a really great Christmas x

Hey Nooby, sorry to hear you have this horrible condition but this community gives you support you don't get anywhere else. Like minded people who have all got different things to offer, its great. I just wanted to say get your pregablin increased. 75mg is a starting dose to see if you can tolerate it. You're lucky your doc gave you pregablin instead of gabapentin as the pregablin is the cleanest form of the drug, gabapentin is full of rubbish alongside the actual drug that helps whereas pregablin doesn't have any of the rubbish, just the good stuff so less side effects!. This came from a fibro specialist and you should be taking 75mg morning and night (don't if that's not what he's prescribed!). I'm on 250mg a day and it ain't working and, as another member said 450mg would be perfect but the GP's are seriously clamping down on pregablin, gabapentin and opiates and benzo's following a recent NICE guideline review so it's going to be really hard work getting our meds. Hello CBD, in all its forms. I was skeptical at first, same story as you I didn't get a strong enough dose. I get 30% now and I get it on Amazon for around £27/28. You just need to read the details to make sure its pure.

This is a link to a Facebook page, the girls does teas as well as oils and then this one is about CBD bath bombs! cannadish.net/bathing-in-ca...

I also wanted to know if you have claimed PIP? This is money individuals can get to help them with the extra cost that come with being disabled. If you haven't and are going to, please, please, please make sure you get help filling in the form. Citizens Advice are great but there are also loads of other groups or charities that have been trained to complete the forms correctly. If you are on ESA or Universal Credit you can also ask for it to be reviewed to be moved into the support group. This gets you more money but can also come with risks which is where the people helping you would advise you. Also if your GP can't help ask to se or be referred to a specialist, usually Rheumatology or Neurology.

I hope some of this helps you in your journey of being a fibro mite! Good luck with everything and gentle hugs xxxx

Nooby
Nooby
in reply to Vixen04

Hey vixen04, wow, that's more info than the specialist has told me!! I have just been put on 75mg pregabalin, been told so far that's its possible to increase dose upto, 20pmg, was first asked, did I take street drugs, as this has now been classed with a street value, and I could sell it!!! After telling them I dont even drink, let alone, take drugs!! She gave me the meds, I am having side effects from it at the mo, but will persevere with them, as was told it really could be a good thing in the end. Good shout on the gabapentin tho, I'll defo, avoid that! With the CBD, how do I know if it's pure? I haven't had much experience with it, so could literally end up buying strong tea!! Lol...I will defo check out your link tho thank you xx I do get pip and ESA, pip are sending out another form to fill in as called them on the advice from my consultant, but I will take your advice on getting help filling it in, as filled last one myself, they put me on standard rate, which is a joke as alot of days, I cant even get out of bed because of pains! Same as ESA, they told me, because I could move my arms (with great struggle and pain) that I am fit enough for work!!! Thing is tho, I had heard of fibro before, but not knowing much about it, I thought it was just joint and muscle pains, but through my consultant, she said my headaches, ibs, restless leg syndrome, anxiety, depression etc etc, was all part of it, to say I was surprised, is an understatement!!! I've been told to try mindfulness, but had that for just over a year, but did nothing, everything I've tried so far, hasn't worked!? So hoping pregabalin, once put up plus, trying CBD oil, that they actually help, even if, with just some, of the pains, would be great. I'm only 43, but feel older than my mum (86) at the mo, and my daughter does a lot for me! So a really big thank you for your advice, I'm definitely going to follow what you have told me, and fingers crossed, I may even be able to get out of bed on xmas day! I hope you have an amazing xmas, hoping pain free! But again, thank you so much for your advice xxx

Vixen04
Vixen04
in reply to Nooby

Hi Nooby, you're very welcome. I was the Disability Advisor in the jobcentre for many years before they retired me. Fibro is a central nervous disease caused by a trauma in early childhood. It's not the trauma but the suppression of emotions thst cause it. As you go through life the stress of exams, work colleagues who just get on your case all the time etc. Things we think are just part of life but never say anything. This all builds up until the fight or flight part breaks and is on permenantly to fight/flight. Bit of a basic explanation but fibro has over 200 side effects, many of which are other auto immune conditions. Most fibro sufferers are alpha people, always saying yes to whatever they're asked. I know that's me for sure and I'm 45 and my son does almost everything for me although he's now 19 it's slowing lol. I too spend most of my time in bed and nobody gets it because it's a hidden illness. If I use my crutches it's a different story. I hate that people aren't told all this because I kept thinking what have I done? Turns out that as I was sexually abused from age 7 to 11 and when I told my mum she said "if you want your stepdad gone he's gone but if you want him to stay and help me bring up your brothers)(who were upstairs howling while I'm sat in the stairs listening to my stepdad in the street calling me all sorts of names) it's your decision". What was I going to say. I said yes he can stay. Since that minute I have lived a double life as my brothers don't know and neither did any member of my family. I'm going to see a psychiatrist because the moment I found out it was childhood trauma that caused us to suppress emotions I've had flashbacks. I haven't spoken to my mum since I fell ill with fibro because it meant I couldn't drive her around (there's nothing wrong with her she just likes to be driven around) so she stopped talking to me but works in my surgery and recently I said hi while her colleague was standing next to her & she ignored me. Her colleague was mortified but fortunately knows me and knows what's going on. So it affects all of your life.

Sob story over, again I hope this info helps you and you get your meds fixed and have a great Xmas!

As for the CBD oil, on Amazon the description tells you it's pure. If it doesn't say it don't buy it. The one I bought described how it was made etc in the bio so you should be fine. Fill the dropper and put it under your tounge and let it dissolve. It's the quickest way to get it into your bloodstream as it's the thinnest bit of skin in your mouth. Good luck, enjoy Xmas and hopefully you'll be pain free and relaxed xxx

Nooby
Nooby
in reply to Vixen04

I'm really sorry you had to go through that with your stepdad, my family went through the same thing with my dad, I was very young when my mother walked out with us all, I have no memory of under 3yrs of age, but over the last 20yrs, I do have flash memories, but I've never told my mum as it would break her heart, as she thinks she saved one of her children! More memories started after my father died, I received photos of when I was a child (the photos he kept and wouldn't give to my mother!) But one particular photo sparked off some disturbing memories! So I really do feel your pain on that one :'( ...I'm glad you have your son there to help you tho, my daughter is 21, but they have to grow up so fast, it's unfair on them, but your son is probably the same as my daughter, shes says, "it's not your fault mum, you've helped me so many times, now it's my time to give back the help you need"...oh and, I can identify with your mum too, as I have a sister that no longer talks to any of us, putting blame on everyone else, except the one that was actually to blame!!! I really hope that in the future, your mum will sit and think about everything that's happened, and the impact it had on your life, and finally break the silence, as it wasn't your fault, you were a child and had no control over anything :( . The info you've given is actually enlightening, I think I've got more out of your message, than the drs etc, that know about fibro!! My life really has been one stressful rollercoaster, from abusive relationships, to looking after my elderly mother, and yes, like you, always saying yes to others, no matter whether I wanted to or not!! Maybe NO, should be a part of life now, without feeling bad, basically, it's time to look after ourselves!!

For the CBD, thank you, I will look on Amazon, and hopefully find the right one lol.

Have an amazing Xmas, sounds like you really deserve it :) , and thank you for all of your help. Oh and, just remember, everything that's happened in life, you still survived and turned out to be an amazing person, with a son with a really big heart, something to be really proud of these days!!

Hope you both have a great Christmas xxxx

Vixen04
Vixen04
in reply to Nooby

Thank you so much. Its funny how many similarities we have! Yes, learn the word NO!! That's what I did just before I turned 40, it was one of the hardest things I've had to do which sounds silly but I'm sure you understand! Yes, I'm proud of my son & he's had to grow up fast but he's never been in any trouble and is respectful and understanding of others with health problems because of it and I'm sure your daughter is the same. I'm happy to have helped and hope it works as good as it did for me. Best of luck and thank you for the understanding. It's horrible that anyone has to go through the things that happen but it can make us stronger as we learn more about ourselves. You to deserve to be happy and strong so as I was once told the most important person in my/your world is myself. If I am not mentally in control then how can I be in control for my son? That was when yes changed to no!! Xxxx

Nooby
Nooby
in reply to Vixen04

Hey vixen04

Yes, the similarities are quite shocking really lol. Honestly, saying NO to people, will definitely feel strange, as I've always been the one there that everyone relies on! But new year, new word! I will still be the, yes, person, but only for a chosen few, rather than all! And I think kids adapt fast to different situations, my daughter has always look after her nan (my mum) even if, just to get something for her, then along comes my many aches, pains and illnesses, she stepped straight up to help. As like your son, she is very caring, and considerate of others, illness or not, shes never been in trouble, doesn't do drugs or drinks. I always wanted a proper childhood for her, she did up to a point, but by the time she got to secondary school, that's when she realised she actually acted more mature! And I think from now on, I will start taking time to look after me, because you are right in, if I'm not in a good, grounded place, then how do I carry on guiding my daughter!? So thank you...you take care of you, and carry on doing what works for you.

At the end of the day, what works for one, may not for another, I think it's all a case of trial and error!

And it is good to talk, because someone could be doing something, another hasn't even heard/thought about.

We are all on a ride that we didn't ask for, so is basically just try enjoying life in those times our bodies allow us xxxx

Vixen04
Vixen04
in reply to Nooby

Absolutely, it was when I was training in CBT and the trainer asked us "who is the most important person in your life?". I automatically said my son and he's like "nope". It took me a few attempts but I got there eventually. What you said about it was exactly what he said. If we're no good to ourselves then we can't help anyone else!

It is so, so hard to say that simple word "No" but after the first time you're so proud of yourself it becomes so easy. You don't need to justify it either OR say sorry!!!! It's just "no I'm not able to do that". Like you, everyone just expected me to say yes - at work, at home and social times. It was always "Oh Claire will do it, she's so good at getting leaving presents, dealing with difficult clients etc" it just becomes the norm. And yes, what works for one may not work for another but even someone reading this post may get some benefit from it but others may say no I'm not ready to do that yet.

That's another thing I was so bad for, apologising for looking after myself by saying no. That took me a while but I got there eventually.

I just hate that people who have fibro (or any other condition, (for me it's Rheumatoid arthritis & Sjogrens Syndrome) don't seem to actually know what their condition actually is, what causes it and what they can do for themselves. By that I mean looking after number 1 and saying no when they are too unwell to do what people are asking. It then helps them explain to other people such as family and friends what is going on with them. That in turn takes away some of the burden that friends and family inadvertently put on them simply due to not knowing the facts. Talking to people who are in the same boat helps so much, you're right. There's no explaining and justifying to do which helps. It's the same as when someone who doesn't know about fibro asks how you are. We always say "I'm fine" yet when we talk to someone who has it we say "I'm tired" and they know that means you're sore as hell and utterly exhausted lol. We can just cut through all of the fake answers we give non fibromites compared to fellow fibromites.

Your daughter sounds like an amazing young woman and yes it does mature them so much quicker but gives them life skills they would not have had before. My son is an apprentice plumber and was doing a job for an elderly couple and the man had either dementia or althseimers and he was able to stay patient when the man kept asking the same question, whereas his 54 year old colleague was so rude and ignorant that the couple put a complaint in about him but commented on how polite and patient mu son was. If I was his colleague I'd be embarrassed by being shown up by a 19 year old boy! Knowledge is the best gift we can give our kids, regardless of what it's about, but for our kids the knowledge they get from helping us and what they see about us (more than we think!) helps them as they move on through life. That's a good thing so we shouldn't feel as guilty as we do. I feel like I'm such a burden but like your daughter said, he just says I'm your son and you looked after me now it's my turn to look after you. Its amazing how they adapt. Anyway enough of my rambling. I still can't get over the similarities their are between us. Bizzare. Have a nice relaxing night, I'm planning a bath but may (probably will) fall asleep lol. Goodnight, Claire xxx

Nooby
Nooby
in reply to Vixen04

Well it was my partner that told me that I had to look after me! We worked together for 2yrs, in a very physical job, with so much heavy lifting (I would carry weights of like, 25 litre bottles, 1 in each hand), one of those yrs, we worked 6wks solid, starting at 6am, to 9:30pm, no lunch breaks or anything, Monday to Sunday, but still, if we finished earlier one evening, friends would ask favours, and obviously, I'd say YES, I was physically, mentally and emotionally exhausted, but still did it! It was then, my partner told me I needed to say NO, to people as it was breaking me down, through the job, I ended up crushing a disc in my back, damaged both hips, and now shoulder problems, just from the job alone. I have many, other problems which, on their own, I could cope, but all at once, its unbearable pain, then to add the tiredness on top, I sometimes think, why me! But this is the cards I was dealt, so I will do my best with what I've got.

My mum and daughter have been absolutely amazing, helping out when needed, even tho, my mum is elderly, and my daughter is her full time carer, but still finds the time to help me!!

I do tend to apologise to people and give them reasons as to why, I cant do something! Again, like you say, telling family and some friends, my problems, has helped upto a point, as they understand why I cant, or won't, do something, but I cant exactly tell the world, so there is still a bit of apologising and explaining!!!

It did make me giggle tho when you said we tell people we are "fine" lol, I do that all the time because I'm just too exhausted to explain why, I'm not fine! It really is so easy to speak to people on here, because I dont have to pretend to be anything, other than me.

I really cannot believe your sons colleague tho, at his age, you really would think he'd know better!! I hate people like that, I thought we were meant to be bought up to respect others, no matter age, gender, disabled or not!?! Your son sounds like an amazing young man, who no matter what, has the respect he should have. It just goes to show, just how well he was bought up, and with what you've had to deal with in life, shows that you were the bigger, stronger person, to end up with a son like you have.

And yes, my plans are to shower but, I'm struggling to stay awake to write this lol. Well whether you bath, or fall asleep, I hope your night is an undisturbed one! Goodnight, Marie xxx

Mydexter
Mydexter
in reply to Vixen04

Hi, if you say fybro is caused by early trauma in childhood, how do you explain fybro in people like me who had a wonderful trauma free upbringing with the best parents and large extended family anyone could wish for?

Vixen04
Vixen04
in reply to Mydexter

Hi,

This is what I've been told but bear in mind a trauma can be anything at all, from what happened to me or a death when you were young, bullying etc. Also I did say "most people" not all. Trauma is different to everyone and can seem simple as an adult but not so much as a child. I'm glad you're childhood was wonderful, as it should be and wish you all the best for Christmas and New Year xx

Mydexter
Mydexter
in reply to Vixen04

Hi, actually you said ,” Fybro is a central nervous disease caused by a trauma in early childhood, “.i don’t think there is any actual evidence of that.

Yes I was extremely lucky and blessed , and I’m thankful every day for it, I I never experienced bullying, or any trauma as a child either, only the normal things like death and illness which is a part of everyday life for everyone and isn’t normally contributed to fybro., it’s just that some people can cope better than others.

I wish you a peaceful Christmas and New year too. 🎄

Vixen04
Vixen04
in reply to Mydexter

Hi,

Did I not say death was a trauma we experience? You state death & illness - both of these are trauma. Maybe you should do some research then if you disagree. I was given this information from a Professor of Rheumatology who is heavily involved in research into all rheumatic conditions and Fibromyalgia falls into Rheumatology or neurology teams. Nobody is perfect and nobody has perfect lives either. You seem to be determined to get into some kind of disagreement and if so I suggest you find someone else for that.

My consultant is not the only person who has advised me of what I stated, Fibro support group leaders, researchers and other rheumatologist have told me this., along with the own research I have undertaken myself only looking at appropriate medical sites.

As you haven't done your research here it is for you, you're welcome.

ncbi.nlm.nih.gov/pmc/articl...

I enjoyed this one: fibrofix.com/blogs/news/chi...

mayoclinic.org/diseases-con...

This one does state there may be no trauma at all and I embrace that as much as I embrace the fact that trauma is a factor. Meaning I am open to all of the researchfinding, but predominately the findings are trauma being a factor. I'm not going to copy more sites for you.

So I mis spoke (or typed!), are you really such a troll that you need to point that out or can you not acknowledge like all of us with fibromyalgia we have the lovely "fibro fog" to deal with.

Why can you not just be thankful for your wonderful childhood as I have already said I'm glad that was your experience, rather than wasting your, and my, time pointing out that I made a mistake?

Please have as much of a pain free Christmas season as you can and have a blessed and happy New Year.

Mydexter
Mydexter
in reply to Vixen04

I am only giving my opinion the same as you are, sorry you have fybro fog , that explains it.

Merry Xmas 😃

Vixen04
Vixen04
in reply to Mydexter

Absolutely, but you stated that "death and illness in childhood can't be contributed to fibro" which I had stated was true(not the illness I just said etc). Therefore I need to defend what I have stated. I very clearly wished you the best for the festive period again so this is not an attack on you. I'm only trying to let another person know as much information as she could get and then you made your statements. This is not an argument.

Best wishes to you and yours, again.

Mydexter
Mydexter
in reply to Vixen04

No argument , just giving my opinion as I said, that’s what this forum is all about, discussions and opinions., though I don’t appreciate being called a troll .

Vixen04
Vixen04
in reply to Mydexter

Hahaha. You just can't resist. Well if it bothers you so much I apologise sincerely for calling yo a troll. It was not intended to hurt your feelings or upset you in any way. I'm very sorry.for upsetting you, I did not intend to.

We will both continue to provoke discussion and share info as well as giving our opinions and on occasion back those opinions up with medical information from reliable websites in order to help people understand their condition better, as usually our doctors don't give us much information, just some pills and a see you later.

Goodbye.

Mydexter
Mydexter
in reply to Vixen04

No I wanted to defend myself just like you, it doesn’t really bother me but it’s not a nice thing to be called.

I fully accept your apology , and as you say we”ll continue to discuss opinions in the hope that one day they will find a cure for this horrible disease.

Doctors , that’s another subject lol. 😉

Vixen04
Vixen04
in reply to Mydexter

Ain't that the truth!!

desquinn
desquinnAdministrator
in reply to Vixen04

hi Vixen04 I know you have explained your thoughts above but the statement "me. Fibro is a central nervous disease caused by a trauma in early childhood. It's not the trauma but the suppression of emotions thst cause it." is not fully accurate.

Trauma is cited as a possible cause for fibromyalgia but not just childhood trauma but trauma at any time in life. People can identify after a car crash or childbirth that their symptoms began but others have something else or nothing at all. Add to this that there is the thought that people may have a preexisting genetic risk that the trauma triggers.

Also some people quote 200 symptoms but this is not definitive and in my opinion it is too many. For diagnosis you would be looking at between 3 - 10 factors/symptoms. When people state 200 their are similes and just plain silliness in the list.

Fibro is not considered an autoimmune condition or at least there's nothing definitive.

The above is to help correct certain statements and it is difficult to separate opinion, theory and fact. And within fibromyalgia there are things we believe to be the best information from what research has been conducted. This is somewhere between theory and absolute fact.

Vixen04
Vixen04
in reply to desquinn

Thank you for your response. I agree completely that people may be predisposed to fibro however the information I gave has came from an eminent Proffesor of Rheumatology & Research and is also the Head of numerous research bodies across Europe and the States. He has way too many letters after his name for me to remember! Irrespective of how many letters he has after his name he is supremely qualified and I am only repeating information given to me by him and his team.

I have not said fibro is an autoimmune disorder, as you have quoted me it is a central nervous disorder. I did say it was not the trauma itself, but the suppression of emotions caused by the trauma. I have not said anything about age other than childhood which is what most of the medical articles from doctors, rheumatologists etc generally say .

Research has also indicated the "over 200" information is also accurate. Information gathered from neurologists and rheumatologists & neurologists as well as others in the medical profession. However as you say, that is your opinion, not mine.

Fibro is a condition which a few years ago there was little information, now however there is a host of information thanks to the people who have devoted themselves to research into this and other conditions that affect people's live so drasticly.

Within science and medical research there is data which people not directly involved in the research can have an opinion on. Other than that medical professionals do not go forward with the results of their research without knowing it works through medical trials, this provides facts.

desquinn
desquinnAdministrator
in reply to Vixen04

If you give his name then I could look at his research but perhaps he was referring to your situation. You could look at the Daniel Clauw paper the science of fibro, yunnus fibromyalgia paradigm paper that was posted on here recently or research by Ernest choi from the UK. Alternatively you could look at information on FMA UK site and you will see what I am saying is the consensus on trauma. Childhood trauma and specifically childhood abuse is a relatively new trigger being cited and needs more research.

The symptoms from research is from correlation and does not go as far as determining if symptom predates fibro or comes after. Also is the symptom a result the situation that fibro people find themselves in rather than medically linked. An example is depression which is more common in people with a chronic health condition including fibro.

There is more but I am on the phone so will stop there

desquinn
desquinnAdministrator
in reply to Vixen04

the reason for my autoimmune comment was that you said "Bit of a basic explanation but fibro has over 200 side effects, many of which are other auto immune condition"

sorry if I misunderstood you but the other suggested that you were including fibro as some people have this position. It may turn out to be the case although the evidence does not support it at present and CSS is the prime candidate for explaining our condition.

Links from earlier comment as I was on the phone:

Science of Fibromyalgia, Clauw - ncbi.nlm.nih.gov/pmc/articl...

The Clinical Concept of Fibromyalgia as a Changing Paradigm in the Past 20 Years, Yunnus - ncbi.nlm.nih.gov/pmc/articl...

Yunnus's paper in section 3 says this "Although FMS patients have a greater lifetime frequency of depression [65], depression per se appears not to be a direct causative factor in the pathogenesis of FMS [66]."

This links to my point about depression above where being present does not indication cause or even symptom link. The way I get my head around this is that if I ask on this forum how many people have broken a leg and this is 5% then I could draw a correlation. This would not be right but to counter my own position there is this study that could draw a link - ncbi.nlm.nih.gov/pmc/articl...

so it is complicated.

Mydexter
Mydexter
in reply to desquinn

Thanks for explaining that Des , it is very complicated😳

Nooby
Nooby
in reply to Vixen04

I've just had a quick look on Amazon, is the main ingredient hemp seed oil? Xxx

Vixen04
Vixen04
in reply to Nooby

That's the one!

Nooby
Nooby
in reply to Vixen04

Great, well in that case...I'm definitely on it lol

Zoonie
Zoonie
in reply to Nooby

Be warned, Hempseed oil is not Full spectrum oil, the strength isn't relevant. Hemp seed oil is classed as a carrier oil only! You need Full spectrum oil made from the whole plant to get the real benefits - you will definitely not get a full spectrum CO2 extracted Organic oil at that price. I sent you a link to the real deal genuine stuff, it's the cheapest good quality oil on the market.

Admin Edit: Link removed

Nooby
Nooby
in reply to Zoonie

Hey Zoonie

Yes, my partner has ordered and paid for the one from the link you gave me, and I've ordered one from Amazon, I don't know much about CBD to be honest, so will give them both a try, if the cheaper one works good enough, then I'll use that, but if your one works better, then I'll stick with that as I am aiming/hoping, to get back to work hopefully, next year. So will try any suggestions (as long as affordable).

Zoonie
Zoonie
in reply to Nooby

I've done about 6 months of fairly intensive research in total, I've tried one from each of the ones I originally thought may help, the first was from H&B it was useless, the next was a lower price one from High and Polite - it was OK but tasted vile the final one was their No1 pick and still a very good price - it's the best in all ways. The Kanna Swiss (who supply the oil for the one I use) is £85 for the same as what I've been using, says it all!

Sometimes can get a bad flare up that may last few days to weeks/ months. Meds can help symptoms but not fatigue really. Just sleep when you need to, I used to fight it but doesnt help. Heat can help with pain, warm baths or heat pads. The best advice is pace yourself doing any task. After 20 mins of reading or whatever switch to something else. This is supposed to help pain and fatigue.

Something to make sure you sleep well.at night such as Nortriptylline may be beneficial.

Hope you feel better soon.

Hi julesubu, it's funny because over the last 4, maybe 5yrs, I was having times stuck in bed, and yes, at one point, was in bed for about 6wks, drs told me to get up and exercise, some told me it was all in my head and to basically, just shake it off!!! Fatigue is a big problem with me, I've tried to stay awake in the day, but then night comes, and I can't sleep!!! So maybe sleep in the day would be a good way to go, instead of trying to stay awake! I do have warm showers, but had wet room put in as couldnt get back out of a bath without pain and struggles! And I learnt very quick on pacing myself, it can literally take all day, just to clean the bathroom etc.

I will try the Nortriptylline tho, as nights are a nightmare!! Thank you for info, I really am learning a lot more from all you lovely people.

Have a great, and hopefully, pain free, Christmas xx

Same situation , my family just bord of me ...all the time muttering and annoying .I can't lift up my right arm @ like to lay down whole day.

Nooby
Nooby
in reply to Sisook

I get that! I cant lift my left arm without extreme pain! Problem is, because fibro isn't a well known illness, people don't know much, or anything about it!! They don't understand the constant pains, I was even told, I was a hypochondriac by some people, even started to believe it myself!! I told my consultant, she said a high number of her patients said the same thing! But it's not all in our heads, it is actual physical pain! Until people know more about this, we will always get talking behind our backs or, annoying remarks like, my god, not something else wrong with you!! People need to learn more about this, and maybe then, understand why, we can't get out of bed or, don't want to go out because of pain!

Sending you big, gentle hugs xx

Sisook
Sisook
in reply to Nooby

thank you hun for reply to me , hope you get better with less pain and merry christmas to you and your family 😘

Nooby
Nooby
in reply to Sisook

You too hun, and same for you xx Merry Christmas to you and your family too xxx

Meditation....deep slow relaxed breathing....dont tighten against the pain even though you find it very hard not to.

Belittle the pain.....if does reduce it.

An understanding that most of FM is caused by nerves sending the wrong message..The Vagus nerve...

FM is not an illness its a name to cover a lot of symtoms caused by nerve damage.

It effects those with immune system illness and those who have experienced bad trauma...

This is my personal understanding after being diagnosed 20+ years ago also I have been drug intollerant for 25 years.

Rheumatoid has destroyed my body but was helped with the toxic drugs they gave me to ease it.....40 years ago...

Positive thoughts do help...

Every day i fight my body sometimes I win and that puts me on a high...

I wish you a happy positive future...dont give in to it....if you go down get right back up......deep slow breaths calm.

Nooby
Nooby
in reply to Mrspainting48

Thank you, I will try meditation, I use to do it to help me sleep at night, and thinking back, I did, notice a reduction in pain levels!! So will definitely get back to it!

Plus, I do fight against the pains at times, doing things I know, will hurt like hell after but, like you, if it doesn't hurt as much as expected, it does put me on a high. But then there are the times when I really wished, I hadn't pushed, as have ended up in bed for days, wks, or even over a month!!!

A friend told me the other day that my daughter had been speaking to her, and said I was her hero as no matter what pain I was in, or whatever was going on (usually something bad) I still got up and did what was needing done!...so pain can put you off your feet for a while but yes, you can still fight it! I will never give up, but sometimes, i will admit, I do give into it for a while! But i will definitely start meditation again, thank you.

I hope you have a lovely Christmas, and hopefully, pain free!

Mrspainting48
Mrspainting48
in reply to Nooby

Its ok to have cotten wool days.....they let you know the good days ......

Season greetings to you and yours x

Nooby
Nooby
in reply to Mrspainting48

Thank you, cotton wool days is how I will explain to others in future, much better than just, I'm stuck in the house/bed!

A very Merry Christmas to you and yours too xx

I've found that 20% or above cbd helps me I just can't afford to buy it every month 😖. Naproxen does little to help so I just stopped taking it as it's not good for the body. I'm on gabapentin at a high dose which does help but I've been told pregabalin is better.

Nooby
Nooby
in reply to Mcnallyl

Hi Mcnallyl, I'm going to try the 16%, but after what I've been told, I will probably have to go higher, but yes, same as you, it is, very expensive! You find something they helps, or may help, but people on disability just about get enough for normal day to day living, let alone, something extra, specially at those prices! I know it's on script for certain illnesses, but that doesn't help people like us 😔, I'm hoping one day soon, they change it to more of a wider range of illnesses! As for you being on gabapentin, go back to your drs and ask them if you can change to pregabalin, because as I've found out, it's much safer for your body! And yes, naproxen doesn't work, I think for me, it was the placebo effect, as I've not taken them for a few days, and I've not noticed any difference! But definitely go back and have a chat with your dr hun. I hope you get some good results from them xx

Zoonie
Zoonie
in reply to Mcnallyl

PM me with what you're using at the moment and its cost, I might be able to help.

Nooby
Nooby
in reply to Zoonie

Done x

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