What else can I do ? I am 20years old and have been been diagnosed with fibro and been put on amatriptaline and referred to the pain clinic

[Johncarter93]

But every day is worse than the day before I can feel my legs loosing strength each day today is worse than yesturday but i know it's better today then it will be tomorrow I just need advice on it all really as I don't understand any of it

[Colegg]

I feel most days are bad compared to the day we are on I walk with crutches and it's getting to the stage where I feel I can't go without a wheelchair I had the worst day ever in a long time today but trust me no days are good on average I spend 4-5 days a week 18 hours aday in bed as got no strength or energy and when I do do something I usually end up falling but I will say if you have good gps around you and a good support network once they find the right combination of drugs ect things do get easier but I will say I have not had a brilliant day since my problems started 3 years ago just hope they can ease the problems even if they don't go I am 30 been suffering since 26/27 can't work and it's getting to the stage people are 2 frightened to take me out as it makes me too tired or I fall chin up I am sure things will start to improve in time but it does take time anytime you need someone to moan to message me xxx

[Cookie72]

Hi there johncarter 93 don't recall your name on here before so if you are new then welcome to our fibro club, we are all very caring and will understand how you feel from day to day, you will get a lot of your new symptoms will maybe come new to you, one of us will have had the symptom and can help you and explain to you......I have had fibro amongst other conditions since I was 11yrs old and am now 72, it may not seem it to you but you will get thru each day, when you have been to the pain clinic they will prob prescribe some form of medication for you, take a tip from me if you find after awhile they aren't helping you go back to you GP and he will change them until you find one that suits you, I'm now on Gabapentin, Tramadol, sertraline and cocodamol as s back up, i was also on morphine patches a few weeks ago, but become allergic to the morphine which was a bummer because they did help along with the others a little... it took quite some time before the right ones were found....at the moment they haven't come up with a pill that will take our pain completely away, I know this is a bummer of a condition, but honestly you do learn to live with it, you have good day and bad days, but feel free to post on here and ask as many questions as you like I'm sure one of us will have an answer....we are a loony bunch but we can be serious when necessary , we go on virtual days out, it's a laugh and helps us thru our pains there are many of us that find it too painful and hard to go out sometimes and these virtual days and trip are a laugh and take us away for a little while from our pain and worries....look forward to reading your posts do come back and talk to us, the volunteers on here are lovely and easy to talk to...take care john ....gentle hugs ...Dee x

[TheAuthor]

Hi johncarter93

I am presuming that you are new to the site so welcome and I sincerely hope that you are feeling somewhat better at the moment. I have read your post with so much inner pain and sorrow for what you are suffering at this time. I wanted to tell you that there is hope and there is a better day ahead!

I was wondering how you feel emotionally? As I can imagine that you probably feel unsure about all of this at the present time? And from your post it indicated that you feel quite low? I truly believe that there is a very fine line between feeling unhappy and feeling depressed, and if you think that you are feeling depressed I would suggest that you talk to your GP about this. I do not want to presume anything about you but as a man, I know that men are less likely to show their emotions and hide their inner feelings, almost as if it is expected of us. However, I want to tell you differently, as it does not matter whether we are male or female, it is genuinely healthy to admit how we are feeling. If you cannot talk to your GP you can send me a private post when ever you want and I promise that I will read it and reply to you.

I have read in your post that you are only taking Amytryptaline at the present time whilst you are waiting for your pain management clinic. Well please let me tell you that there are other medications out there that your pain clinic can give you. It will almost certainly be a question of trial and error as to which medications work for you. As we are all unique individuals and we all react differently to our medicines. So I cannot truthfully tell you that one works better than another.

Please take care of yourself and remember you can post me anytime you need a friend.

All my hopes and dreams for you.

Ken

[littlewelshy]

Hi johncarter93

Like yourself I was only in my twenties when I was diagnosed and had to wait 6 months for an appointment to the pain clinic. I understand your concerns about feeling your muscles getting weaker and trust me you need to stop this happening. I thought my GP was barking mad when he told me to take up Pilates, but it honestly has been my saving grace. Not only did it rebuild my muscle strength, it also helps to alleviate my pain, especially in the hips and knees. so I would highly recommend giving it a go, I started off doing dvds at home before going to join a class, but it made such a remarkable difference that by the time I got to see the pain clinic, they said there wasn't much they could do for me, as I mostly doing it myself.

[Ginsing]

Hi John

Welcome to the site I do hope it will offer you some assistance. Look around it on fibroaction.org lots of information about Fibro.

We all have it I am afraid to say and know how you are feeling. If you are able do take up pilates and swimming too both are so good for the muscles. If it hurts don't give up it will get easier.

You will see that the site is predominantly female but we have more and more males joining. There is always someone available to chat to.

Looking forward to reading your posts

Be gentle on yourself and keep smiling through!

xgins

[Hidden]

hi am ellen , don't give up , I have had it know 3 year , all I have for it is pain killers , I will not let is beat me even if the pain is bad really bad I say to myself I have to get up and walk my dogs even if is a half hour walk I do it, I get numess in my hand and feet after I do my house cleaning to its all down to the pain and nerves when ur bone's push on ur nervs that what it does to u , some day I say to myself how do I do it , get up every day and fight it , well if you love life you have to , I wish you a long road of getting the best out of how you want ur life to go out of this , we all here to chat anytime xx

[denvajade]

Hi there so sorry to hear you have been diagnosed with fibro, it is a horrible disease.

I have found rest,rest,and more rest is what you need. Try to eliminate some stress(hard to do sometimes) you wont necessarily get worse by the day, I have had fibro for 15 years and have been in remission several times, but to achieve this you do need to be kind to yourself. wishing the best.

[Hidden]

Hello John, To learn more about fibro go to the top of the page and click on the yellow butterfly It will take you onto the web site and from there you can explore all; the information In your own time Hugs sue

[amyddevereux]

Hi John,

I had noticed your message and definitely found myself relating to what you had described regarding the pain and your legs loosing strength. I have experienced that feeling of weakness in my legs and body all over and still do on the odd day, however for me it has got better with time.

Like many people when trying to get your head round a diagnosis, it all comes as a shock, a little surreal perhaps, but yet you know that having a diagnosis is a step forward...but it's then adapting to now knowing that it is Fibromyalgia, and that was the part I found tricky, as it takes time and there is a mind field of info out there to read, some of it helps, some of it doesn't!

It is good you have been started on the Amitriptyline, I have been taking that for over a year now for my Fibromyalgia and really find it helps relieve some of the symptoms, or certainly makes them more bearable. Secondly, I know everyone is different and so individuals with Fibromyalgia may experience the symptoms slightly different to one another, but for myself, my step dad who has it and a friend, we all have to pace ourselves. This isn't easy and takes time to adapt, particularly when at 20 you probably have a busy life! But I have found that that is a good way of managing the Fibromyalgia and getting the best out of my life, by learning what is too much, what I can manage, what I can't etc...and then looking at my diary and planning. It's very much a case of trial and error.

As for the pain, look at how your doctor can help with this in terms of pain relief and also what is out there to help you, so does massage help? Tens machine to wear if the pain is really bad in your lower back? Gentle swim? Deep breathing? It's so easy to shut yourself off when the world is carrying on around you and your in a lot of pain, and possibly confusion about what the doctor's told you, the left it almost left to you, or that's certainly how it feels!

Give yourself time and know that you will come forward through this, it's just a case of learning, adapting and giving it all time.

Best of luck John

[loppyloo61]

Hi John, Sorry to hear you have been recently diagnosed with Fibro and welcome to this wonderful Forum.I wish I could say that things will get better but I don"t want to give you any false hope!

You say you are on Amatriptaline & awaiting Pain Management Clinic? You can still go back to your GP for a referral to Rhyumatologist, who most of us suffers are under the care of. As there are several different opitions of combination of Medication that even your GP can prescribe to help you with the pain (lots of it is trial and error, until they can get the right combination of Meds to help you). As sometimes, according to Area you live, there can be quite a long waiting-list until you have a Place on the Pain Management Clinic.

I have to say I have been on several Pain Management Clinics, unfortunately they hav"nt got a Magic Wond, it is basically showing you Techniques how to cope daily with the Condition.

You do sound rather dispondant, which is totally understandable, being diagnosed so young and experiencing all the problems you are @ present. My heart goes out to you, as my son who is 29 years old, also has Fibro. I honestly don"t know what is the worse of the two evils, Watching him struggle, having to leave University in his 3rd Year, as he was just too ill to carry on with studying and had to come back home. Or going through it myself??!!

It is an insidious illness and can be very debilitating!! Trust me, I know its sounds mad but some days you are better off trying to move as much as you possibly can, I know it hurts, as it causes Muscle Wastage especially in legs, it is a vicious circle!

Of course we all get days when it is just too impossible just to even get out of bed, mostly referred to as "Flare-ups" and can last quite a time.

Joining this Site will probably be very beneficial to you, I have found it so. Everyone is extremely friendly, helpful and kind in my experience.

I was typing a "post" @ 3.30 am today as I just could"nt sleep because of the pain. It just lightens the load a little to speak (metaphorically) to other Sufferers who totally understand where you are coming from. No-one can possibly comprehend the pain and misery it causes unless you have been through it yourself.

Although we have some great Characters that make us laugh, it is NOT all DOOM & GLOOM if you share things!

I look forward to hearing from you again and will reply to you. as soon as possibly can.

Best wishes to you, hope you get out of this Site as much as I do, people sharing their experience, strength , Hope and there is always excellent advice, I have found extremely helpful.

Take Care.

Sending you Positive Healing Energies

God Bless, Betty Baby X

[Mdaisy in reply to loppyloo61]

Hello there Bettybaby,

Glad to hear you are finding the site informative and supportive

Emma

[loppyloo61 in reply to Mdaisy]

Bless you Emma, for your kind, supportive encouraging words and help to me and all other members.

Grateful to be a member of this wonderful Forum. As I said, I have received invaluable advice and help, regarding lots of issues and would just like to take the opportunity to Thank You and all other Members, who have/are helping me along my journey.

I have lived with Fibro for over 20 years and this is the first time I have ever had the wonderful support this Forum has to offer!

I don"t know how I managed before.

My son has Fibro too, unfortunately he had no option but to leave University in his Final Year, as he was just too ill to study or live away from home!

That was the worse part for me watching "The Bottom of his life fall from under him!".

Sadly he is in a Wheelchair now (He has other serious debilitating rare syndromes, Dystrophies & Illnesses).

Many Thanks to you.

Sending you Positive Healing Energies.

God Bless, Lynn X

[Mdaisy]

Welcome to our FibroAction Community Johncarter93,

You sound as if you are newly diagnosed and your local Rheumatology department has possibly given you very little information about Fibro. Please do not worry, you've made the first step by reaching out to us all as we all live with Fibro including myself and we are able to share our experiences in the hope it will help others.

We are lucky as this forum is run by the charity FibroAction of whom I am a volunteer. FibroAction is a UK charity who are raising awareness & making up-to-date, reputable and evidence-based information about Fibro more readily accessible and this is at the heart of what it we do. FibroAction is one of the organisations that have the Information Standard Certificate to ensure that the information we produce is clear, accurate, balanced, evidence-based and up-to-date.

Our information team are currently working hard to update the information as per he information once again, so please watch this space as FibroAction add even more evidenced based information to their website,

I would personally suggest that reading our 'All about Fibro' series of Factsheets would be a good first step and you may find the FAQ category here in the community helpful too.

For instance the following may be helpful;

healthunlocked.com/fibroact...

healthunlocked.com/fibroact...

Fibromyalgia can be managed, it is hard and you may need to adapt to a new way of living and use a combined approach using various treatments & therapies to reach a level of functioning that makes living with Fibro easier. You may experience mixed emotions on this journey as it leads to acceptance but we are here in the community to listen and help as best we can.

Please see this link about prognosis below;

fibroaction.org/Pages/What-...

You may find looking for an independent support group near you, as you may find people living in your area you can meet up with who live with Fibro too. Here's the link;

fibroaction.org/Pages/Suppo...

I hope this helps

Best Wishes

Emma

FibroAction Administrator

[Babs1620]

Hi.

I am sorry you are in so much pain and not getting much help. I am now on morphine, pregabalin, and amytripaline (prob. spelt wrong) and other tablets as the above are affecting my kidneys but make a lot of difference as to how I manage my pain levels. Without thee morphine I could not cope from day to day. I have been suffering for about 40 years now. I hope you can settle some of your pain problems and look forward to a better life.

[leebeloola]

Try to keep moving (stretches, walking) even if its not exercise as it will be harder the longer you dont move. But stop before the pain gets really bad. Have you tried tiger balm or capsaicin cream for your legs? Or you could try gentle stretches for your legs in a hot bath.

I was diagnosed at 25, 2 years ago. It changed my life completely. Since then I have found it very helpful to read up on fibro (fibro for dummies is great) and together with a gp who is willing to learn with me, try the most easily available treatments first. The for dummies book has a chapter on how to figure out if your doctor is good enough or whether you need another one. Also: doctors make mistakes, they're only human. So don't trust them implicitly, question them and make your own choices.

Make a list of what treatments you want to try. Medify.com is a good website to get an idea of what research has shown about different treatments. Try to make sure treatments are based on research, there are lots of treatments with little or no research which you will see online a lot.

Doctors find it very helpful if you can give them a list of your current meds, your symptoms (on average and bad flare up days), other medical problems you've had, how your fibro started and what tests your doctor used to rule out other causes(if you only just got diagnosed they will want to make sure the diagnosis is correct). I also make a list of questions for myself and take notes. This way the information gathering stage of the appointment is shorter and I usually get to ask all my questions and get the most out of the appointment. Plus I don't forget what they said.

A rheumatologist should know a lot more than a gp about fibro treatments, as long as they "believe" in fibro. Its really important you get your meds right and you will need more than 1 visit for each new medication. I didn't find pain clinics that helpful, but I got referred far too late and had tried most things theybsuggested already. Most of the treatment offered you can get referred for by the gp: painkillers, physio, antidepressants.

I am improving and these are some of the things that helped me: electric heat pad, a really good desk chair, back support cushion on sofa and a light one i can carry with me, eating healthier, trigger point therapy. Graded exercise works for some people but only if done right and super slowly. You could try doing something like pilates,yoga,tai chi with an instructor who has had clients with fibro so they can adapt it to what you can do. I also did CBT with a counsellor to help me come to terms with it and accept my new limitations and learn to pace better.

Try to keep track of flare ups and what you think caused them. In time you will find some answers this way.

[earthanhel]

try reflexology babe

[tasha2]

Pain Clinic i have just posted about that