Hi 17, just diagnosed with Fibro. - Fibromyalgia Acti...

Fibromyalgia Action UK

48,666 members60,154 posts

Hi 17, just diagnosed with Fibro.

Scb123
Scb123

Hello. I am 17, female, & just diagnosed with Fibro three days ago. I have had symptoms for awhile now but more within the last few months I have had widespread body pain. I tested positive for an autoimmune disease which I thought was my thyroid but the rhem. Said it was Fibro. I had the tender point test done twice and although I do have pain in all those areas, I didn't feel it when being assessed. I am scared and depressed I truly feel like my life is over. I have a very low pain threshold and this is so hard for me. I feel like I will never have a good day again or live a norma life. I can't accept that this will never go away. I'm going to start going to a pain clinic and I'm on cymbalta. I am also going to do light stretching and excersise as well as take supplements. I just worry that it will get worse every year, I have read so many forums an everyone seems so negative and they never seem to get better and it terrifies me. I want to get tested for Lyme again by an LLMD just to rule that out. I had other symptoms such as hair loss and u would get really weak all the time. I became more tired within the last year and the body aches are recent. Any advice I feel so lost. I also hve PCOS and they tested me for anemia. It runs in my family and so do autoimmune diseases but not Fibro.

51 Replies
oldestnewest

Hi scb 123 Sorry to hear you are suffering with so much at your age. I would hope you have a good medical team and Doctor, also family, who are so important. Even with all your suffering there are lots of lovely things in life to enjoy. And I would like to say, if I was your age now (I am 68) and I know what I do now about my illnesses, I would still find lots of things to enjoy in life. And make sure you do lots of things you enjoy, mind over matter a bit if you can. And get all the help you can from people, staying independent. And I must just say. a lot of good and positive things can come from beingill So as Ken says all my hope and dreams for you Julie xxxx (uggy)

Scb123
Scb123 in reply to uggycat

Thank you this made me feel better! It is just beyond overwhelming and I can't comprehend that I will be in constant pain. I also deal with bad anxiety and so I've been cOnstantly stressed. I haven't had a bad flare just a mini one but I'm terrified of this illness and flare ups seem absolutely terrifying. My family and doctor are amazing. Do pain clinics help? And did you get used to the pain? I am determined to stop this disease from progressing by making changes now.

bluebell99
bluebell99 in reply to Scb123

Hello and welcome to our friendly forum. Here you will find advice, support and help as well as funny posts for a lighthearted moment.

Have you seen our mother site fmauk.org ? Here you will find a wealth of information and advice about fibro.

I am sorry you have been diagnosed at such a young age, it must seem very overwhelming for you. We do have members of all ages here as unfortunately fibro does not discriminate for young or old.

I am afraid I do not understand that you have tested positive for an autoimmune condition and yet your rheumatologist has said you have fibro? Fibro is not an autoimmune disease, the diagnosis is generally given when all other conditions have been ruled out. I am even more suspicious that you have a genetic link to autoimmune but not fibro.

Do you have another appointment with your rheumatologist? If not I would go back to your GP and find out what is really going on and if you need another referral to some other consultant. Going by your symptoms I would not rule out something else that is going on.

I have locked your post as this makes your information secure. You can find out more how to do this by looking at the Pinned Posts in blue on the right.

I do hope you get some answers, but in the meantime be assured that not everyone has the same symptoms of fibro to the same degree, we are all different.

Kay

Scb123
Scb123 in reply to uggycat

What positive can come from being ill??

uggycat
uggycat in reply to Scb123

Hi Scb well with me personally pain clinic was not much help. But you being younger they might have a different approach. And you do get used to the pain. to a point with the carful help of medication, and can even with the right help manage without meds. Also think in the future there could be found something specially to help people with fibo. Also I should think keeping healthy and active , helps a lot. Well the positive that I think come from some illnesses, are you sometimes take a different path in life, you might have done without it. And cometo have many surprises how rewarding and fun, some of these can turn out to be. Also meet a lot of amazing different people you might never of met. Well I certainly have. xx julie

Scb123
Scb123 in reply to uggycat

Thank you! ARE flare ups as scary as everyone says they are? I have mny friends with Fibro and they say that it gets better over time and they do get used to the pain and enjoy normal happy lives

Scb123
Scb123 in reply to uggycat

How long did it take for you to learn your body and adjust to the pain

Hi when I was first diagnosed I was terrified even though I really knew I had fibromyalgia after years of tests - and pain especially in my legs was horrendous and my walking abilities terrible but since they have put me on cymbalta my pain has eased my walking has improved - even though I was diagnosed at 59 (after feeling ill for about 6 years) I still felt depressed about the future then I decided - I have this - so handle it!! - when I am upbeat I feel much better when I am down - I hurt more - I now go swim and aqua 3 times a week - and walk the dog, and try and focus on the things I love -art, painting, cooking, etc the positive things about this illness - is you grab every "better" day and enjoy it - don't let it pass you by like a "well" person may - get good friends and family around you - supportive up beat people- read some of my previous posts - I hope they help - so sorry you got fibromyalgia young but as my doctor said - its not terminal there are a lot of worse things you could have - try and beat fibromyalgia don't let it beat you !! Good luck - get yourself as fit and healthy as you can - rest when you need to - have laugh with your friends - take care - Neese. Xxx

Scb123
Scb123 in reply to neesey1005

Thank you so much. I'm glad I have found positive responses it seems other people have been so negative and when I tell them what I have they say oh no that's horrible! But I guess it could be worse. I'm having a hard time still I will be fine and positive and then it hits me, that I have this and it's chronic. I freak out I'm soooo not good with pain like I cry from cramps. I like to bake, swim, and bike ride. I live in Arizona and it's mostly warm here except when the dust storms came I ache more. WHAT supplements do you reccomend and excersise ??

uggycat
uggycat in reply to Scb123

Hi again well Arizona sounds very exotic from where I'm Sitting right now. I would not recommend supplements to anyone, think you should discuss things like that with you doctor. Or perhaps there is a special clinic you can find out what you might benefit from taking. Sound to me you are doing a lot of right things anyway. I have known that docs can give people things that help with cramps. I guess your so awake cause of different time zone. Its six in morning here. I am just back to bed for a nap befor I get up. Think you will find a lot more folk on here in a couple of hours take care for now Julie x

Scb123
Scb123 in reply to neesey1005

I get so depressed and I stay in bed all day because I just want the pa N to top. I know this makes it worse but it really feels like I'm dying slowly and I'm convinced it's something worse. can Fibro really make you feel like you're dying

I get so many weird sensations and burning and tingling, I haven't really had my first bad flare up I gusss but it seems like even when I'm fine my hair will hurt sometimes or I burn or tingle a lot! And the random sharp pains that feel like migraines in your body UGH! Do you ever get used to those

neesey1005
neesey1005 in reply to Scb123

I go to aqua aerobics twice a week - its a gentle class - don't go for a hard class , I also swim - best in warm water - I only do things for about an hour- then I rest - for. example aqua is 45 minutes then I have a hot shower and go for coffee with friends from the class - if I bake - I only do it for about an hour then I rest - learn to pace yourself - I take magnesium and cod liver oil tablets but I eat very healthy -a med diet - fish , white meats, fruits, salad - no process foods and I have allergies - no wheat or gluten - I started off with the stabbing and spasm but haven't had them for the past year - this is an awful card you have been deal but if one of my sons had it - I would push them to get as fit and healthy as possible - remember a lot of fibromyalgia is brought on by depression - you body gets tense and then pain comes in two fold - I do have bad thinking days but I fight them and concentrate on what I do have in life and not what I dont have - I am going back to have a sleep now - its nearly 6am so tired - take care of yourself - always remember you are stronger than fibromyalgia- pull yourself up - depression makes it much worse - get your mind occupied on other things - Neese x

Scb123
Scb123 in reply to neesey1005

Thank you for the advice! Enjoy your sleep :)

Scb123
Scb123 in reply to neesey1005

I'm going gluten free too. Is that what got rid of the stabbing

Hidden
Hidden

Scb you need to learn firstly to take it one day at a time. Dont be pre empting things or worrying about years down the line. You will still have some good days with meds but as most of us know they dont work every day then thats your bad days. Try and take it as it comes. As a sufferer myself i feel its very important to keep up mentally. If the mind goes the body will go with it. wishing you as many pain free days on your new journey. marty.

Scb123
Scb123 in reply to Hidden

Thank you, ta so hard I think months ahead. Hoping you have great days ahead as well

It's scared me how some people say they would rather have cancer .. ive seen so many horrible things about this disease that I'm so terrified of it. My doctor said it could be so much worse and I should be thankful that this is manageable

Mydexter
Mydexter in reply to Scb123

The good news is you don't die from fybro so I do nt know about rather having cancer, as Hidden says try and live each day as it comes, it's the only way some days will be bad but then the next could be a good day so you make the most of it, it's the learning to manage it is the hardest, and you are so young, hopefully you will see a cure or at least better meds in your lifetime, good luck

Hidden
Hidden

I never said it was easy scb lol. But you have to learn to cope. There are a lot of other worst diseases and illnesses out there to take but i think ill stick with this one lol

Scb123
Scb123 in reply to Hidden

I can't wait to learn how to manage myself and learn what works for me. Everything seems so hopeless right now I hope it isn't always this way

Hi Scb123

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I really am so genuinely sorry to read that you are suffering and struggling, and that you have Fibro at such a young age. It may help to talk to your doctor about how you are feeling as their are other options that could be open to you such as counselling or Hydrotherapy?

I want to sincerely wish you all the best of luck, and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Scb123
Scb123 in reply to TheAuthor

Thank you so much, I am overwhelmed with everyone's responses but in a good way

TheAuthor
TheAuthor in reply to Scb123

Good luck my friend

hi I am sorry to hear about your results.you are still young, but having said that your life is not over , I know you are already feeling depressed . I have had fibromyalgia for 71/2 years and am 53i also have other conditions as well, but if you ever need anyone to talk to I am here for you. I haven't been on this site for long but everyone else on here seems positive enough xxx💕💕xxx

Scb123
Scb123 in reply to andie53

Thank you so much. I am here for you too! How is your Fibro did it get worse or better

I just wanted to ask.. would most of you say your Fibro got better or worse

andie53
andie53 in reply to Scb123

hi my fibromyalgia HAS stayed tbe sane, i9 have bad days but the good outweigh the bad 😋 I was prescribed pregabalin or lyrical as there sometimes called have helped me a lot😋so ask your doctor about them xx💟💟

Scb123
Scb123 in reply to andie53

Glad to hear this! Hoping mine stays the same too I am on cymbalta. How long have you had it

uggycat
uggycat in reply to Scb123

Just replying again before I pop out, if some people on here suddenly stop replying, through a conversation, it is probably because they suddenly get sooo tired. so do not take offence. Perhaps you could join a support group, or if there is not one start one up in your area. take care have a good day or night whatever it is where you are xx uggie

andie53
andie53 in reply to Scb123

hi I have had fibromyalgia now for nearly 8 years and I contracted it due to a trauma when I was in my 40s. I have been taking pregabalin now for about 6 months but I am also on other Medication ☺☺ xxx

andie53
andie53 in reply to Scb123

has your doctor put you on a vitamin D and Calcium supplement as people like ourselves are lacking in those vitamins, maybe you could ask your doctor . I also take a multivitamin & mineral supplement which I find helps also

you can travel and do anything else you want to do in your life because I do, having fibromyalgia will not stop you doing anything you want to, just look after yourself and I will try my hardest to answer any questions you may have just remember that you are not alone sleep well love Andrea xxx 😂

Hello sc

to try to keep the pain down 1tbsp of turmeric 1tbsp ginger 1tbsp cinnamon in a ltr water

and bring to the boil simmer for 10mins cool add honey to taste drink half a cup on a empty stomach first thing in the morning

I know that it sounds like a hellofa mixture but after a fewdays the pain especially in your joints should ease off

good luck girl Xxx

Scb123
Scb123 in reply to jbgood7

Thank you I'm going to try this!

Hi Hun, I was finally diagnosed at 23 and had had chronic worsening pain for two years before that. I'm now 34. I've since had my own business and 3 children! It is something you can learn to live with but it can be tough journey getting there. I fought it for a long time but until I accepted that this is how I am, I didn't get a better control of my symptoms. I can't emphasise enough how important stress management is, it's something I've learnt along the way. Try and keep moving, people told me how important exercise was but I couldn't comprehend it as the more I move the worse I feel. However, whether I exercise or not I'm still in pain so I might as well benefit from the strengthening of my muscles and core strength. It can take time to build up but I find Yoga a great way to stay supple and also relaxed. YouTube have some great yoga videos you can do at home and classes are great too.

I've had all the meds under the sun but now I don't take any. They didn't take the pain away anyways and made me feel sleepy and even lower on energy, so I stopped taking them under supervision from my Dr and now I sleep brilliantly. Although I've still not had a pain free day yet, I'm a lot better concentrating on filling up on healthy supplements and good food. I also juice everyday now to ensure I'm getting enough vitamins and minerals. I find sitting and laying down more painful than littering about and keeping active. Believe me your life is not over and you can learn to live with this, but I'm not going to lie to you it's bloody tough sometimes. Having support is important so I'm glad you have that. For the last few years I have been having a sports massage regularly to ease out any tension and I also see a physiotherapist every few weeks to ensure my nervous system is aligned, and my back and pelvis are all functioning how they should be as my back is where the problems first started for me. i have never felt as well as this and although as I say, I'm still achey, stiff, heavy everyday, pins and needles, throbbing.... any flare ups I have pass really quickly and my energy levels are better. Also when I exercise, I'm so tired that I have a great sleep and although J feel sore the day after, I have the sense of achievement and I have released the built up tension. Wow this is a long message lol. I'm still convinced that I will cure myself of this pain. Ive heard great stories about Bowen therapy so I'm going there next week to try it and I'm looking into using oils also. I know my story is just my experiences and not applicable to everyone, but I honestly never thought I would be able to run again, I couldn't even carry my first baby sometimes or walk to the end of the street. Now I can workout at the gym and lift light weights. Yes it hurts, and yes it makes me sore but I'm so much stronger now. But you can do this, and this won't ruin your life because you won't let it. Work with it, listen to your body when you feel like a rest, do it as when you deplete the energy and run on adrenaline you will feel 10 times worse for it. Use your energy wisely, mange your stress, do things that make you happy and stay positive. Ride the bad days and relish in the good, the hard times always get better and know that when things are tough, accept it for what it is and look forward to when you have a good day again. I wish all the best for you I really. God I'm cramping up writing this, time for a juice and a hot shower to start the day. I'll be tired all day as usual but when it comes to 6pm I feel like cleaning! The joys of Fibro eh! Happy bonfire night.

Take care Hun xx

Scb123
Scb123 in reply to Angiedeaks

Wow this really inspired me. I'm so happy that you're doing so well! I am going to try a lot of the thing you suggest. I really hope my Fibro improves. Thank you so much

Angiedeaks
Angiedeaks in reply to Scb123

It is something you do get used to. I'm very stubborn so when I think I can't do something I try my best to do it and am proud even if I don't manage it, at least I tried. I don't check the forum regularly but will keep a lookout on how you're doing, I wish you all the health and happiness in the world, as with everyone else. No one understands unless they live this so having people who can empathise will help you. Take care xx

Scb123
Scb123 in reply to Angiedeaks

Thank you! I can't wait for the day I get used to it. I accept it for a few hours and then boom. I just get angry because I'm so young and my body feels like a 98 year old woman. It's hard to accept. How did you learn to accept it

andie53
andie53 in reply to Scb123

hi its something that just happens,accepting what fibromyalgia is just comes with time, the further down the line you get accepting it becomes easy. I accept you are very young to have this problem but you are not alone.

I have a friend with fibromyalgia and her daughter is only 20 years old and she also has the same condition. remember if you need anyone to talk to I am here for you at any time, take care and look after yourself all my love Andrea xxx 😁

Angiedeaks
Angiedeaks in reply to Scb123

Some days I don't to be honest. I've had a shocking few weeks which have been made worse by stress (family problems). But trying to be positive and changing your outlook helps you cope. With time you learn to adjust your life and get to know the triggers. However, I still over do it on good days and sometimes I'm my worse enemy, but I know that good days will come again xx sorry for not replying sooner, things have been hectic Xx

Janethaywood
Janethaywood in reply to Scb123

I don't think you ever really accept it, you just have to roll with it on a day to day basis! I was diagnosed at 48 and had to retire from work as working was impossible, the resentment and anger I feel is unbelievable. This was just over a year ago, I even got to the point of thinking why am I even alive anymore 😢😢 but I was extremely depressed and in so much pain I wasn't thinking straight. Don't get me wrong it's a hard slog this disease, it's exhausting, it drains you but you do learn to just get on with it. I must moan 3456 times a day ha ha and my poor hubby must be so sick of rolling his eyes at me 😂😂 because there's only so much he can do. But believe me sweetheart you will just learn in your own way to just cope with it, because no one can teach you that my love, you need to come to terms with it yourself. You ever need a chat give us a shout ❤️️❤️️

Hidden
Hidden

Hi scb 123 . Sorry you are feeling overwhelmed , not surprising . I have a daughter who is 12 who is showing some signs of maybe having fibro , so I am no expert , and am only at beginning of this journey with her . But this site is full of lovely kind people who I am sure can suggest lots of ideas for you to try to see if they can help you feel a bit better and help you find a way to cope. Most importantly I think pace yourself, try the exercise / healthy eating , maybe ask for some help of having someone professional to talk to if you want to . If you are question diagnose, knowledge is power, so lots of research into this and other conditions, and ask for second opinions. I was recently at a Rheumotologist appointment for my daughter and chatted to a lovely lady in waiting room who had the condition herself as did her 17/18 year old daughter, and it was comforting to chat and hear other people in same situation . Don't let it beat you, start each day new and focus on the day ahead and maybe keeping a diary , writing things each day , ideas of what you could try , new things you have learnt about the condition , how you feel etc , your plan for the day of what you are going to do , it may help you focus . I am keeping a diary for my daughter of all symptoms and meds and trying to spot any patterns . Good luck and best wishes .

Scb123
Scb123 in reply to Hidden

That must be so hard for her to be so young I am so sorry to hear that. I agree with filling out the conditions, I hear so many people getting diagnosed with this and it ends up being Lyme or something else. I am praying for you and thank you so much for the advice. Your daughter is probably stronger than I am lol

I am really sorry you have this at such a young age, yes it is not nice and there are worse things. The thought of the disease is worse than having it. I agree with having a good diet and gluten free, it has definitely helped me, for me I take painkillers, it is the tiredness that is the most troublesome. I am still working 60 hours a week and still travel the world, I have had it 7 years, it does not stop me doing anything and it wont you. I am sure you will go on to have a great life and family as long as you do not let it get you down, you will have bad days, but you will have plenty great days. Try to get as much sleep as you can, that can be the key to the great days. I agree with magnesium supplement too as we are all short of this. What works for you, might not work for someone else and vice versa, we are all different degrees of this illness. Try not to get stressed, I know that can sometimes be difficult. People who do not have this, really dont understand it, because they dont see an illness in you, they think you are okay, but all the people here know what you are going through and will help with any advice they can, Now you go and look forward to your future and just take this fibro day to day. You take care honestly, just dont let it get you down.

Scb123
Scb123 in reply to stephen111

Thank you! Wow traveling, that gives me hope. I hope I can still travel with this illness. It does take time to adjust to something like this I just can't but get myself to adjust. And I heard that the more negative you are in the beginning that can make you're condition worse along the road.

stephen111
stephen111 in reply to Scb123

You will be able to travel wherever you want, The past year I have travelled from one end of the world to the other, If I can so can you.First you need to accept what you have, then find the right medication and diet and rest, Sometimes it is trial and error. But you WILL get there. It is difficult to be positive in the beginning, but you will get there. Get a doctor that understands the illness, because not all do. You will beat this, read about it and try different things to help. Do not let it stop you being a teenager, Enjoy your life to the max. Take care

The 1st thing I would say to you is just hold on. I know we're all different & our bodies react differently to different things but there are alternative therapies & things to try. Just don't give up!

Please start looking into other therapies, supplements, and the use of silver or copper colloids. I have felt a bit better lately after taking probiotics and copper colloid but like I said, our bodies are all different. God bless you hun.

Hi scb123

Firstly welcome to this site you will never feel alone any more there is always someone who will listen to you and give you good advise.

Now what you must do is keep thinking happy thoughts and do what you can when you can, don't fight it make friends with your pain it helps, except help when people offer, find a hobby that you like and continue doing that when you can, don't lock yourself away come on this site and get anything off your chest instead of bottling it all up, you will find lots of help and tips, it has made me feel better just knowing that you are not on your own keep smiling welcome to the elite club there are more of us then you think.

Love & Hugs

Hi there!.

Like yourself, I am new to the forum. I am sorry to learn that you have been diagnosed with Fibromyalgia, your pain, suffering and fears. I send a big but gentle forum H-U-G from each and everyone of us. A forum tissue to dab your tears, and a gentle squeeze of your hand to welcome you.

I certainly am feeling far more assured with getting to know many others on the forum (and those I meet in my work and life) that like myself have fibromyalgia. We all experience this condition in our own individual ways and look to gain understanding, in order to help ourselves and our lives so that we can cope and live life as best possible with this condition. The wonderful support of everyone on the forum is heart assuring and comforting in many ways and you have each and every one of us with you and behind you.

You mention 'I am SCARED and DEPRESSED I truly feel like my life is over. I have a VERY LOW PAIN THRESHOLD and THIS IS SO HARD FOR ME. I FEEL LIKE I will never have a good day again or LIVE A NORMAL LIFE. I CANT ACCEPT that this will never go away'.

I hope that what I have written will give some enlightenment for you. Please bear in mind that what I have written is from reading up on this condition, learning, knowledge, research, findings, personal experience (others also) and understanding.

BEING AND FEELING SCARED:

Learning that you have this condition and not knowing hardly anything or much about it, it's not surprising you feel and are scared. I (and countless others) felt the same on learning I and they had this condition and I daresay the majority of us that have this condition also felt and still are scared (and still feel such).

We can identify with being scared and feeling scared as we can from the stress from fibromyalgia's pain and fatigue that having this condition can cause anxiety and social isolation. The chronic deep muscle and tender point pain can result in less activity. ... It is also possible that anxiety and depression are part of fibromyalgia, just like the pain.

UNDERSTANDING FIBROMYALGIA:

Chronic pain is defined as pain that lasts longer than 3 months. That’s the main symptom of fibromyalgia: widespread muscle pain and tenderness that lasts longer than 3 months. Widespread pain is defined as pain both above and below the waist and on both the right and left sides of the body.

At its best, fibromyalgia may be described as “mild.” At its worst, intense pain can get in the way of doing normal day-to-day activities.

Some fibromyalgia sufferers describe their pain as “all over” or “everywhere.” For some people, the pain and stiffness are worst when they wake up. Then it improves during the day. Symptoms may increase again at night. But other people have all-day, non-stop pain. This could include combinations of neck pain, arm pain, shoulder pain, back pain, hip pain, knee pain, feet pain, and pain in just about every other body part.

The pain may get worse with physical activity, stress, or anxiety. Fibromyalgia patients may also be more sensitive to things around them. This may include heat/cold, bright lights, loud sounds, and more. Even a gentle hug could be painful.

People with fibromyalgia have chronic pain and tenderness all over the body.

Although they have pain and tenderness and ache all over, they are often diagnosed by doctors based on tender spots (also referred to as tender points) in certain places in their body.

These include:

Front and back of the neck

Mid- to upper-back of the shoulders

Upper chest

Elbows

Upper buttocks

Hips

Knees.

Possible Fibromyalgia Causes:

Heredity. Research shows that, like many conditions, fibromyalgia is believed to run in families. So it is likely that some people are born with genes that increase their risk of getting it. Fibromyalgia can start at any time. But there may be some events that trigger fibromyalgia in those who have an increased risk of developing it. Accidents and injuries. Fibromyalgia may be triggered by an injury or trauma (for example, auto accidents and war). Infection. Some infections that may be linked to fibromyalgia include hepatitis C, Epstein-Barr virus, parvovirus, and Lyme disease. Autoimmune disorders. These disorders occur when the body’s immune system sees its own tissues as foreign and attacks them. Rheumatoid arthritis and lupus are examples of autoimmune disorders. Psychological and emotional stress. The onset of fibromyalgia has been linked with certain types of emotional stress.

Pain is the core symptom of fibromyalgia, but different people feel the pain in different ways.

Fibromyalgia pain may be felt as:

Chronic pain

Deep pain

All-over pain

Aching pain

Radiating pain

Shooting pain

Tender pain

Additional common fibromyalgia symptoms may be felt as:

Sleep disruptions

Chronic fatigue

Problems with memory and thinking clearly (sometimes called "fibro fog")

Overlapping conditions such as irritable bowel syndrome,

Restless leg syndrome,

Muscle Spasms

migraines, and others

Tingling

Balance

Numbness

Bloating

Sinus

Tooth Disorders

IBS

Tinnitus

Jaw Pain

Bladder Problems

Skin Complaints, i.e rashes

Lower back pain

Frequent Headaches

Arthritis

Issues with Bright lights

Issues with Noise

Weight gain or weight loss

Sore scalp

Allergies

Other Problems with:

Depression

Anxiety

Mood swings

Tearful/crying

Anger

Frustration

Isolation

Impatience

Lack of confidence

Lack of or increased appetite

UNDERSTANDING YOUR PAIN SYMPTOMS:

If you are struggling to describe your pain symptoms you are not alone. Many people with chronic pain conditions (pain lasting more than 3 months) struggle to accurately describe their pain to their doctors. It’s not easy. The pain may be simultaneously located in multiple areas:

Pain above the waist such as neck pain, shoulder pain, chest pain, and upper back pain

Pain below the waist such as hip pain, buttock pain, leg pain, and foot pain

Pain on the right and left side

And at every point in between

The pain may move around.

Or it may seem like it is everywhere at once.

The intensity of the pain may also change from day to day. Some chronic pain sufferers describe their pain as:

Aching

Deep

Shooting

Radiating

Tender

Pins and Needles

It can be frustrating for those who have chronic pain all over. This is especially true if they don’t know the source of the pain.

Awareness of fibromyalgia has increased in just the last few years. Yet, for many, fibromyalgia continues to be a hard-to-diagnose condition.

Why does it tend to be so difficult to diagnose fibromyalgia? One reason is that your doctor can’t see it on an x-ray or do a blood test. Instead, he or she relies on your description of your symptoms and a physical exam. Also, many fibromyalgia symptoms occur together with other conditions. Your doctor may test you for these other conditions as well.

Myths and Facts About Fibromyalgia

Myth: Fibromyalgia is rare.

Fact: Fibromyalgia is one of the most common types of chronic pain disorders. It is estimated (by research in 2014 - sorry I don't have a more up to date estimation!) that more than 1 million people in the UK and 5 million people in the United States have fibromyalgia.

Myth: Fibromyalgia is “all in the head.”

Fact: Fibromyalgia has been described for centuries (See History of Fibromyalgia). But it wasn’t until 1981 that the first scientific study formally confirmed fibromyalgia symptoms and tender points in the body.

Since then, researchers have further tested pain reactions in people with fibromyalgia.

Imaging studies show that the brains of people with fibromyalgia have more activity in reaction to pain

Studies also have shown that people with fibromyalgia feel pain more intensely at lower levels than people without the condition

It's thought that overactive nerves cause the pain of fibromyalgia (see Science of Fibromyalgia).

Although fibromyalgia is not just “in the head,” it is still important to understand that the condition is stressful—especially when it goes undiagnosed. Stress can also make fibromyalgia worse.

Myth: Doctors diagnose fibromyalgia when they can’t find a “real” diagnosis.

Fact: It’s true that diagnosis of fibromyalgia often takes time. There is no specific lab test for it. Your doctor can't see it on an x-ray or do a blood test to confirm it. Instead, he or she relies on your symptoms and a physical exam. What’s more, the symptoms can overlap with symptoms of several other conditions. These other conditions must be tested for as well.

But fibromyalgia is very much a real condition.

In 1990, the American College of Rheumatology developed guidelines for diagnosing fibromyalgia. Today, these guidelines are widely applied.

What’s more, there are now thousands of studies validating this form of chronic widespread pain. In 1990, there were only about 200 published studies on fibromyalgia. Today there are more than 4,000 published fibromyalgia studies.

Myth: Fibromyalgia is a “woman’s disease.”

Fact: The majority of people with fibromyalgia are women (about 80%). But, remember that fibromyalgia is a common condition. That means many men are diagnosed as well.

Studies have found that women with fibromyalgia do tend to have a lower pain tolerance and more symptoms than men.

Both genders, however, responded similarly to fibromyalgia treatment as well as other nondrug treatments such as exercise.

Fibromyalgia is also seen in all age groups, from teenagers to older people. But the symptoms more typically begin in a person’s 30s. Fibromyalgia occurs around the globe. And it appears in all ethnic groups and cultures.

Myth: The pain of fibromyalgia is mild.

Fact: Some people only experience mild symptoms, especially when they are being properly treated. For others, the pain can be severe. It can have a significant impact on quality of life. Simple things they once took for granted, like working, going for a walk, household chores, and taking care of their families can become difficult. Symptoms also often get worse under stress or even under certain weather conditions.

Myth: There is nothing that can be done to treat fibromyalgia.

Fact: Although fibromyalgia cannot be cured, for many people a diagnosis can be validating. It can mark the beginning of a new journey toward relief of some symptoms. Many people with fibromyalgia are able to reduce their symptoms through lifestyle changes and treatments.

DEPRESSION:

Depression is a KEY SYMPTOM for many people with fibromyalgia. Up to half of all people with fibromyalgia also have depression or an anxiety disorder when they are diagnosed with FMS. Stress from the constant pain and fatigue can cause anxiety.

Also, chronic pain can result in a person being less active and becoming more withdrawn. This, in turn, can lead to depression. It is also possible that anxiety and depression may actually be a part of fibromyalgia, just like the pain. People diagnosed with fibromyalgia and depression report difficulty concentrating and impaired short-term memory (fibro fog).

In regard of depression, the SIGNS of depression with chronic pain may include:

decreased energy

difficulty concentrating or making decisions

feelings of hopelessness, guilt, or irritability

loss of interest in nearly all activities

persistent sad or anxious mood

uncontrollable tearfulness. (In

severe cases, depression with chronic pain can lead to thoughts of death or suicide).

FEELINGS of depression are common with all types of chronic pain, including headache, back and neck pain, hip pain, shoulder pain, and the pain of fibromyalgia. For example, the medical profession recognises that the prevalence of major depression in people with chronic low back pain is about three times greater than in the general population.

Neurological complaints such as numbness, tingling, and burning -- are often present with fibromyalgia. While the causes of these feelings is unclear, numbness or tingling sensations in the hands, arms, or legs are felt by many people with fibromyalgia. The feelings may be especially bothersome when they occur in the mornings along with morning stiffness on arising.

The medical term for these sensations is paresthesia. The sensations usually happen at irregular times. When they do occur, they may last a few minutes or they may be constant. While the sensations can be bothersome, they are not severely limiting.

PAIN:

In regard of the pain, the main fibromyalgia signs and symptoms include deep muscle pain, painful tender points, and morning stiffness. Other common symptoms of fibromyalgia include sleep problems, fatigue, and anxiety.

Unlike the joint pain of osteoarthritis, fibromyalgia pain is felt over the entire body. The pain can be deep, sharp, dull, throbbing, or aching, and it is pain that's felt in the muscles, tendons, and ligaments around the joints. The Arthritis Foundation describes the muscle and tissue pain as tender, aching, throbbing, sore, burning, and gnawing.

For some people with fibromyalgia, the pain comes and goes. The pain also seems to travel throughout the body.

Along with the deep muscle soreness and body aches, people with fibromyalgia may have painful tender points or localised areas of tenderness around their joints that hurt when pressed with a finger. It's the tissue around the muscles and joints rather than the joints themselves that hurts. These tender points are often not areas of deep pain. Instead, they are superficial, located under the surface of the skin.

The location of tender points is not random. They are in predictable places on the body. If you apply pressure to tender points on a person without fibromyalgia, he or she would just feel pressure. For a person with fibromyalgia, pressing the tender points can be extremely painful.

FATIQUE:

Next to pain and tender points, fatigue is a major complaint. Fatigue in fibromyalgia refers to a lingering tiredness that is more constant and limiting than what we would usually expect. Some patients complain of being tired even when they should feel rested, such as when they've had enough sleep.

Some patients report the fatigue of fibromyalgia as being similar to symptoms of flu. Some compare it to how it feels after working long hours and missing a lot of sleep.

With fibromyalgia, you may feel:

Fatigue on arising in the morning

Fatigue after mild activity such as grocery shopping or cooking dinner,too fatigued to start a project such as folding clothes or ironing, too fatigued to exercise,more fatigued after exercise,too fatigued for sex, too fatigued to function adequately at work.

SLEEP:

Sleep disturbances are common in the majority of people with fibromyalgia. While people with fibromyalgia may not have difficulty falling asleep, their sleep is light and easily disturbed. Many awaken in the morning feeling exhausted and unrefreshed. These sleep disturbances may help create a constant state of fatigue.

During sleep, individuals with fibromyalgia are constantly interrupted by bursts of brain activity similar to the activity that occurs in the brain when they are awake. Tests in sleep labs done on individuals with fibromyalgia have shown that people with fibromyalgia experience interruptions in deep sleep. These interruptions limit the amount of time they spend in deep sleep. As a result, their body is unable to rejuvenate itself.

Studies show that most people diagnosed with fibromyalgia feel stiffness in the morning when they get up. The stiffness is extensive -- affecting the muscles and joints of the back, arms, and legs. It makes them feel the need to "loosen up" after getting out of bed before beginning their usual activities.

MORNING STIFFNESS:

Some people with fibromyalgia report that the morning stiffness may last only a few minutes, but in general, it is usually very noticeable for more than 15 to 20 minutes each day. In some cases, though, the stiffness lasts for hours, and in others it seems to be present all day.

While most people feel stiff when they first wake up, the stiffness associated with fibromyalgia is much more than simply a minor aching. In fact, people with fibromyalgia have the same feeling of stiffness in the morning that people feel with many types of arthritis, especially rheumatoid or inflammatory arthritis.

Chronic headaches, such as recurrent migraine or tension-type headaches, are common in up to 40% of people with fibromyalgia. They can pose a major problem in a person's ability to cope with and self-manage FMS. The headaches may be a result of pain in the neck and upper part of the back. They are often caused by tightness and contraction of the muscles of the neck, which results in a type of headache called tension-type headaches or muscle-contraction headaches. They may also be caused by tender points over the back of the head and neck. It is important to remember that other medical problems can cause headaches, so frequent or severe headaches should be properly diagnosed and treated by your doctor.

IBS:

Is Irritable Bowel Syndrome a Symptom of Fibromyalgia?

Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in up to 65% of patients with fibromyalgia. Acid reflux or gastroesophageal reflux disease (GERD) also occurs with high frequency.

URINARY FREQUENCY:

Feeling an urge to urinate, urinary frequency, painful urination, or incontinence can happen in people with fibromyalgia. Because these symptoms can be caused by other bladder and kidney diseases, such as an infection, check with your doctor to be sure no other problems are present.

MENSTRUAL CRAMPS:

Unusually painful menstrual cramps may occur in women with fibromyalgia. These cramps, along with other symptoms, are usually present for years.

RESTLESS LEGS:

Restless legs syndrome results in discomfort in the legs, especially the areas of the legs below the knees, and the feet. It is especially bothersome at night. The feeling can be painful, but most commonly it is described as the need to move the legs to try to make them comfortable. Restless legs syndrome often interrupts sleep as the person tries to find a comfortable position for rest. As with other symptoms, restless legs syndrome can be found alone or along with other medical problems.

MEDICATION:

Treatment for fibromyalgia tries to ease some of your symptoms and improve quality of life, but there's currently no cure.

Your GP will play an important role in your treatment and care. They can help you decide what's best for you, depending on what you prefer and the available treatments.

In some cases, several different healthcare professionals may also be involved in your care, such as:

A rheumatologist – a specialist in conditions that affect muscles and joints

A neurologist – a specialist in conditions of the central nervous system

A psychologist – a specialist in mental health and psychological treatments

Fibromyalgia has numerous symptoms, meaning that no single treatment will work for all of them. Treatments that work for some people won't necessarily work for others.

You may need to try a variety of treatments to find a combination that suits you. This will normally be a combination of medication and lifestyle changes.

LIFESTYLE CHANGES:

Living With Fibromyalgia You Can Actively Work to Reduce Your Fibromyalgia Symptoms Life with fibromyalgia can be a challenge. But you can take steps to proactively manage your health—and your life. Action is empowering. Your doctor is your most important resource. Work closely with your doctor and talk about which steps might help you find fibromyalgia pain relief. You have options such as lifestyle changes, support groups such as this wonderful HealthUnlocked Forum and its members, and medication.

Some Lifestyle Changes May Help You Find Fibromyalgia Pain Relief Exercise A healthy and active lifestyle may help you decrease your fibromyalgia symptoms. Studies show that second to medication, the actions most likely to help are light aerobic exercises (such as walking or water exercise to get your heart rate up) and strength training. But always check with your doctor before you start any exercise program.

These tips from the National Fibromyalgia Association may help you get started. Start slow. If you're moving more today than yesterday, that's progress Listen closely to your body. It's important not to overdo it. Don’t increase your activity too quickly Start with just a few minutes of gentle exercise a day. Then work your way up.

Walking is a great form of exercise Track your progress. Note the exercise you're doing and how you feel both during and afterward Stretch your muscles before and after exercise Post-exercise soreness will decrease over time. But respond to your body's signals and pace yourself

Sleep: If you find that you are sleeping poorly, you're not alone. With fibro, pain and poor sleep happen in a circle. Each worsens the other. Fortunately, there is a lot you can do to help yourself sleep better.

Benefit from physical therapy, chiropractic, acupuncture, massage or other bodywork, (e.g. yoga), nutritional counselling, therapy etc.

The National Fibromyalgia Association, the National Pain Foundation, the National Sleep Foundation, and other expert organizations recommend the following steps to help people sleep: Stick to a sleep schedule. If you go to bed at the same time every night, your body will get used to falling asleep at that time. So choose a time and stay with it, even on weekends Keep it cool. When a room is too warm, people wake up more often and sleep less deeply.

According to the National Sleep Foundation, studies show that you're likely to sleep better in a room that's on the cool side. So try turning down the thermostat and/or keeping a fan on hand As evening approaches, cut out the caffeine.

Caffeine has a wake-up effect that lasts. It's best to avoid it well before bedtime. That includes not just coffee, but also tea, colas, and/or chocolate.

Avoid alcohol before bed. That “nightcap” may make you sleepy at first. But as your blood alcohol levels drop, it has the opposite effect. You may find yourself wide awake Exercise in the afternoon. Afternoon exercise may help you sleep more deeply. But exercising before bedtime can make it harder to fall asleep.

Nap if you need to, but be brief. If you're so tired that you must take a nap, set the alarm for 20 minutes. Snooze any longer and you may have trouble falling asleep at night. Make your room a relaxing refuge. Treat yourself to comfortable bedclothes and snuggly pyjamas. A white-noise machine or fan may help you fall asleep to a soothing background sound Develop a relaxing bedtime routine.

Reading helps some people fall asleep. So does listening to soft music.

Do whatever works for you. But try to follow the same routine every night to signal your body that it's time for sleep Fibromyalgia Diet.

So what about your diet? There’s a lot of information on the Internet about “fibromyalgia diets.”

Many researchers say there is no perfect eating plan for fibromyalgia relief. Talk to your doctor about what is right for your needs and your lifestyle. Let your doctor know if you have eliminated any foods from your diet. Also, be sure to tell your doctor if you are taking any nutritional supplements. They can possibly interact with any medications you may be taking.

Another helpful skill is stress management.

Stress plays a big role in how you respond to different situations, both physically and emotionally. Stress can have a significant impact on your ability to do the things that are important to you. There are many different stress management techniques to try that are easy to learn such as Meditation Deep breathing Visualization exercises You can also simply allow yourself time each day to relax.

That may mean learning how to say no without feeling guilty. But it's important to stay active and keep to a routine you can manage.

A type of therapy called Cognitive Behavioural therapy has also been found to be helpful. Studies show it can reduce pain severity and improve function. Cognitive Behavioural therapy helps us see how our thoughts affect how we feel and what we do.

In Addition to Your Physical Needs, Consider Your Emotional Needs. “It’s comforting, talking to people that understand. It helps and they know what you’re going through".

Learning to cope with fibromyalgia can be a challenge.

Good emotional support can help. Try reaching out to family and friends. Talk to your loved ones about how to help give you fibromyalgia support. It’s also important to work closely with a health care professional who understands your condition. However, fibromyalgia can be hard to understand.

Your friends and family may not always know what you are going through. Even members of the health care system may not be as sensitive as you may wish. Maybe the support you need has been lacking. There are certain feelings, frustrations, and successes that only someone else with fibromyalgia can identify with.

Reach out to others who have walked in your shoes. Let your loved ones and others with fibromyalgia help you along the way.

Support groups exist all over the country, as well as online. Support groups can help you connect to others who have the chronic widespread pain of fibromyalgia.

You can also learn more about fibromyalgia You can get ideas about ways to manage it and become closer to your friends and family All of this may help you better manage your fibromyalgia.

Honour your limits:

Accept and respect your limits to help you better manage your fibromyalgia pain.

One way you can do this is by creating a personal statement. This can help you stay aware of your boundaries—as you define them—and focus on what’s important for you. Your statement might include: A statement that acknowledges what happens when you try to do too much on your "good" days. (Example: "I often do too much on ’good’ days because on ’bad’ days I find it hard to do anything. I usually pay the price of doing too much on a ’good’ day the very next day") A statement that gives you a specific action to take to avoid overdoing it. (Example: "I will make time to take a rest today. Whether it is quiet time that involves a short nap, reading a book, or listening to music, finding this time can help increase my chances of having another good day tomorrow")

COPING: Learning to cope with fibromyalgia can be a challenge. Good emotional support can help. Try reaching out to family and friends. Talk to your loved ones about how to help give you fibromyalgia support. It’s also important to work closely with a health care professional who understands your condition.

However, fibromyalgia can be hard to understand. Your friends and family may not always know what you are going through.

Even members of the health care system may not be as sensitive as you may wish. Maybe the support you need has been lacking. There are certain feelings, frustrations, and successes that only someone else with fibromyalgia can identify with. Reach out to others who have walked in your shoes. Let your loved ones and others with fibromyalgia help you along the way.

Build your support system List the people you can rely on ahead of time to help you on your "bad" days Just knowing that you have backup may help reduce your stress Your support network can help with completing important tasks For example, on a "bad" day, ask them to run an errand or pick up your children from school Sometimes, they could just be there to listen.

Support groups exist all over the country, as well as online. Support groups can help you connect to others who have the chronic widespread pain of fibromyalgia You can also learn more about fibromyalgia You can get ideas about ways to manage it and become closer to your friends and family All of this may help you better manage your fibromyalgia.

What is 'a normal life'? .........Is a life you make from decisions, choices and action. A 'normal life' can be without pain or with pain. It can be made 'normal' by putting things into perspective like PAIN.

None of us imagine that pain would take hold of our lives and nearly ruin it.

Terrible Pain combined with a Sense of Hopelessness. We can find that we gradually, begin to recede into a world dominated by constant struggles with, and focuses on the pain. Everything else can begin to fall by the wayside, things we love to do — the things that give our life joy and meaning — can appear to be no longer possible. We can see our world shrinking dramatically for example, spending much of the time at home, usually on the couch watching television, depressed by what our lives had become and in agonising pain. Eventually, beginning to lose hope and leave us a shell of our former selves. We can easily become isolated.

RECLAIM your life!

Although many of us don't realise it, we are not alone. Chronic pain has emerged as a major health issue in this country.

We have to accept that pain is probably ever going to go away completely. Pain medications are certainly not going to make that happen.

How to RECLAIN your life:

Take up the offered tools and skills — mindfulness, meditation, exercise, and more — that are out there to help us change our relationship with pain.

Most importantly, its so important to direct our thoughts toward the positive things in life and to practise gratitude for them.

Daily or weekly physical therapy sessions and group classes in which are available (ask your doctor or specialist or look on line), we can attend to be taught about nutrition and holistic approaches to harnessing the power of our minds to manage our pain. Sometimes we need a reminder to enjoy the simple pleasures in our lives — sharing a laugh with a friend, listening to great music, taking in the beauty of the world around us — and make them central to our daily lives.

This world is sadly full of suffering and we may all identify with a well known saying (perhaps we have said it or heard or read it elsewhere), 'There is someone worse off'. This should help bring things in to perspective. Fibromyalgia is not life threatening - it wont kill us (even if we think/feel it is) but Cancer for example may or does.

Keeping and being optimistic can be touch and unrealistic. You have a right to your feelings. Putting on a smile, a brave face, a mask can prove wearisome. If you want to cry, shout, curse etc., so long as its in the comfort of privacy let your feelings go, don't bottle them up. Let them out. Talk about these feelings.

You may say, 'what would be the point, what would it achieve? It wouldn't solve the issue or issues but its a release from pent up emotions - think of a shaken bottle of fizzy pop........there is a risk of the bottle exploding if the fizz is not released. The fizz can settle (even if the bottle top is not removed) but it can take a long time! ...until the next time the fizz builds up and so on.

Finding a balance between acting falsely buoyant and feelings of despair. Being hopeful is reasonable. Complete disavowal of negative information about illness can be problematic; cautious optimism is often ideal.

As I progress in my own life and daily pain, I experience my heart opening more and more to those around me. My eyes opening and clearly seeing the needs of others from a place of deep compassion as opposed to being wrapped up within myself. At the end of the day, it is about finding

what works for each of us and for you.

Best wishes and another ((((((( GENTLE HUG))))))

Breianne x

Hi scb, I was diagnosed at 23, but suffered pain since I was 16. I am pleased you have been diagnosed at a young age (obviously it's not good) because I spend most of my teenage years struggling and pretending I was okay! We are all here for you, we welcome new members with opens arms and if you ever want to talk just pop one of us a private message or a public post!

Clumsy 🍁

Hi. Please try NOT read these pages where every one is in so much pain. Please find something for your age group where people talk completely different . There should be a page made for you youngster only. Most of us are old or older. This page is not for you. If you feeling down you definitely need cheering up perhaps with a comedy channel. I love e.g Billy Connoly but probably not so funny at 17. I sincerely hope that you you keep going back to your doctor until they find something definite.. Please do only happy things.

You may also like...