It hurts...

[ruchikhurana]

Hello everyone! I'm new here. Just joined yesterday. I am 16 and have been diagnosed from fibromyalgia and chronic fatigue syndrome last april. It pains a lot. I was unable to give my class 10 exams last year and I have to give it this year now. I would like to know how you all manage your daily activities.

[rosewine]

Welcome to our site it is such a shame that you are so young and already have these illnesses to contend with. There are a few younger members on the forum who also struggle with their education or starting degrees. You must just go at your own pace and not compare yourself to others as they do not have the problems you have.

Have a look at our mother site Fibromyalgia Action UK as it has a wealth of information about different treatments, pacing etc. It is a case of getting the right medication and pacing yourself to try and get the best out of every day. Look forward to your future posts😁x

[ruchikhurana in reply to rosewine]

Thank you so much

[BlueMermaid3]

Hi there

Welcome to the forum I am sorry to hear that you have Fibromyalgia and CFS at such a young age.

I was diagnosed when I was 20, although I am now 55.

Unfortunately there is not a great deal you can do other than to pace yourself.

If you can, do an activity for an hour then take a break. Go back to your activity for another hour and take another break. Keep taking breaks and make sure you keep yourself hydrated by drinking enough water.

If you have good day, make sure that you don't over do things.

It is very tempting to try to do a lot on good days, but you just end up paying for it the next day.

Are your school supporting you with extra help due to your condition? If not, can your parents go and see the Special Needs Educational Officer at your school and explain your problems. They should be able to offer you some sort of help and support.

Wishing you less pain and more peace

Lu x

Administrator

[ruchikhurana in reply to BlueMermaid3]

Hi

Thanks a lot for all your advice. I'll keep them in mind

Yeah, my school is helping me to the extent they can. Rest I have to manage. Things are really tough.

How are you doing?

I wish you the same

[aud01]

hi ... I am sorry genuinely sorry to hear abiut how you are feeling .. I was diagnosed with fibro about 4-5 years ago. amongst a lot other illness's. I also suffer form CFS . and basically all I do is pace myself .... I have been to see physio and they said same .. just pace myself .... but never over do anything...

good luck and you're in the right place here xxx

[ruchikhurana in reply to aud01]

I am sorry to know what you are going through. How are you doing now?

Thanks for your advice and good luck to you too xxx

[aud01 in reply to ruchikhurana]

I get by . but that's all my life is . getting by . I sleep from 10 at night to 12 or 1-2 the next day ....I need help going anyplace and I need help in and out bath and washing my hair and drying and washing myself ..... I manage with a struggle to get dressed but that's because I wear baggy clothes . and very rarely change them ... I'm embarrassed to say ..I get help from my kids but I have a grandaughter now that is only months old ... andni can't keep her over night as I can't manage . but hey . you keep your chin up and good luck xxx

[ruchikhurana in reply to aud01]

Oh I am really sorry you have to go through all this thing. Life is tough and we have to be more tougher. Stay positive and get well soon

[naturalnikki]

Hello. I'm sorry you have to deal with this and you're still in high school. I was in my late teens when I was diagnosed, but I am now in my early 30's.

As everyone else has said don't push yourself too hard. I said screw it a few years ago and started running. I didn't stretch enough and didn't pace myself enough and I an still dealing with IT band issues, so be careful. I am not a patient person and talking it slow is REALLY hard for me but it is worth it.

I don't know if it will help you but it helps me too stretch twice a day when I wake up and before bed. I stretch every muscle not just the large main muscles. Hold the stretches about 30 seconds, if you don't hold them long enough it won't help and if you hold them too long it could damage the muscle. And don't stretch too far, don't want you to hurt yourself, I'd you decide to try it.

You can try range of motion type exercises.

Change of diet may help. I find vegetables very helpful. I try to eat as much as I can.

It depends on who you are and what is affecting you.

A lot of my pains are muscle related so I focus a lot on trying to heal my muscles.

My energy levels seem to be improved with my diet as well.

I try to stay busy while still taking breaks. I work then break work then break. I find it hurts more if I sit or stand too long.

Spirulina, is something that has helped me, it is the equivalent to several servings of vegs. But if you decide to try it look for a good organic brand that is respected. Don't get yourself sick trying to get better.

I get everything I can organic. I try to keep my chemical exposure down as much as I can. I hope that through getting & keeping myself healthy I can keep my fibro at a tolerable state as i hope to refrain from needing pain meds- they scare me.

Please feel free to ask questions or rant till your hearts content. This is a wonderful place with a lot of genuinely Nice people that love to help and support each other. So now that I have cheesed up the place. I will leave it at that.

[ruchikhurana in reply to naturalnikki]

How are you doing now?

I am going for physiotherapy regularly and it helped a lot. Even I have stopped taking painkillers. They don't really help much and moreover, I have developed tolerance for them. Though the pain is still severe, but I just don't want to take them anymore.

Thanks for all your advice and suggestions

[naturalnikki]

One more thing I would add is To check out exercises that prevent or help heal injuries. I would use them as a prevention of injuries. And I would look up proper posture stuff like while walking sitting sleeping etc.

I go to a chiropractor and a massage therapist also. I feel they do wonders for my muscles.

I'll let you know if I think of anything else. I've been stuck in a thick fibro fog lately.

Good luck with finding your way

[ruchikhurana in reply to naturalnikki]

Thanks

I'll look for it.

What are you doing for your fibro fog? Meditation?

Wish you good days

[naturalnikki in reply to ruchikhurana]

I did the same with pain killers when I was younger. I found myself taking way too much because they just didn't help me, so I stopped taking them.

I do meditate. Meditation helps me more with mental state than memory.

Fish oil/omega 3 capsules have helped me in the past. I am obviously not using them now. -because it's so rough right now.

I am doing ok though. Trying to escape the last bit of a flare. I am a steady at home mom/Homeschooler and don't get to focus on myself as much as I should or could. But I am slowly improving; which is all I can ask for.

I hope you have a wonderful day!

[ruchikhurana in reply to naturalnikki]

Hope you get better soon. Take care

[TheAuthor]

Hi ruchikhurana

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:

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fmauk.org/

.

I am so genuinely sorry to read that you are suffering and struggling with Fibro, and especially at your age. I perosnally tend to pace myself. If my body says no more today, then that is it! I also undertake a very gentle physiotherapy regime lasting about 20 minutes twice daily and this helps with my pain. I also use a TENS Machine, I do not know if you have tried one? I have pasted you an excerpt and a link to a *NHS / Arthritis Care pdf below. It is possible that this could help with your pain and is always worth a try:

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*What is TENS?

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A transcutaneous electrical nerve stimulation (TENS) machine works by creating a

tingling or buzzing sensation on your skin. This can help to block or suppress pain

messages to your brain.

TENS machines are small, lightweight, battery operated devices that fit into the palm

of your hand. They have rubber electrodes that attach to your skin, with leads

connected to the machine. The electrodes are either self-adhesive or attach to your

skin using water-based gel and adhesive tape. They are usually positioned either side

of the area of most intense pain. You will be able to control the strength (or

‘volume’) of the current that is passed through the electrodes, with a rotary knob or

dial. Some machines have larger controls that are easier to use if your hand

movements are limited.

Some TENS machines have two electrodes and some have four, used to treat a

larger area of pain. A low voltage current is passed through the electrodes and you

feel a buzzing or tingling sensation. This can be increased until the sensation is

slightly painful. You can then turn the current down until it is fairly strong but not

uncomfortable.

.

*How can I try a TENS machine?

.

You can ask your doctor to refer you to a physiotherapist to try a TENS machine. If

TENS helps to relieve your pain, your physiotherapist is likely to give you between

20 minutes and a couple of hours with the machine. It may take a few sessions to get

used to. TENS can be used for one hour on, one hour off, throughout day

.

*NHS / Arthritis Care Factsheet:

.

nhs.uk/conditions/physiothe...

.

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

All my hopes and dreams for you

Ken

[ruchikhurana in reply to TheAuthor]

Your site is really informative. I am going for physiotherapy regularly but I haven't yet tried TENS machine. I will ask my therapist for it.

Thank you.

Wish you more good days

[TheAuthor in reply to ruchikhurana]

Good luck my friend

[Hilsam]

So sorry to hear that you have this at your age.

I have had CFS/Fibro since I was in my late 30s, but my son's partner developed it in her teens. She now is a lot better than she was, has a young child and works part time. The progress of the illness varies and especially in young people. I have taught a number of late teenagers with it over the years and some improved significantly. FE and HE institutions are more clued up on it now, and can be very supportive.

As others have said the trick is to pace yourself, listen to your body. It sounds like you are doing that. Try relaxation and meditation. Hopefully your doctor can refer you to a pain clinic and any other facilities which will give you help and support within the NHS. I trust you can find support on here. It is a great place to find advice and as others have said there are members of your age group on the site.

Good luck, and my best wishes to you, Hilary x

[ruchikhurana in reply to Hilsam]

Thank you so much for your suggestions. I am from India and there's nothing like NHS here or maybe I don't have any idea about it. Though pain clinic exists here also but they are not much effective. I'll try to find it out.

How are you doing now?

Wish you good days x

[Hilsam]

Oh I see. It may be worth pursuing the pain clinic possibility where you are, but there are alternatives. Throughout my illness I have used acupuncture for pain, but also found it energising. The response to acupuncture varies, for some it seems to do little, but for many like myself it can be very helpful.

I am up and down a bit these days, but manage to do the things I enjoy, particularly painting and writing. When I first developed the illness I had a year off work and a paced return. I managed to continue to work for 20 years and over that time I had improved. I then had a period of intense stress, a number of life changing events at once, and relapsed. I think I could have possibly averted this had I rested more and taken care of myself better, but...

At your age you should be positive. Your body is young and strong, and if you rest, eat healthily and pace, then you can improve. Having a year off work as soon as I developed it was significant in my progress I think. I had a very good doctor and was lucky.

Do take care, hope you find some good pain relief and keep us posted on your progress.

Hilary x

[ruchikhurana in reply to Hilsam]

I haven't tried acupuncture yet as I am afraid it might be very painful. I have tried acupressure though and it didn't work for me. I have just started taking alternative medicines - Homeopathic and unani medicines. Let's see if they work out for me!

I am very positive about things. It's just sometimes that I feel low. Afterall, I am a human!

Glad to know you can manage things and you are better after a year off!

Thank you

Take care x

[Hilsam]

Of course you are bound to feel low sometimes. Everyone does. It is such a difficult illness to deal with. Hope your pain improves, H x

[ruchikhurana in reply to Hilsam]

Thank you x