Fibromyalgia

Fluffy Unicorn

Can anybody give me any advice to help me with my 14 yr old daughter who appears to have fibromyalgia?
She has a lot of pain, only attending school part-time.

kangaroo

Fluffy Unicorn wrote: »

Can anybody give me any advice to help me with my 14 yr old daughter who appears to have fibromyalgia?
She has a lot of pain, only attending school part-time.

Exercise is often recommended for Fibromyalgia. But it is far from a panacea and many people can't tolerate it well esp. if they have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is often co-morbid with Fibromyalgia.

Tropheus

I'd agree with the exercise advice also, but it's not for everyone as we all have varying degrees of pain. Have you also tried having a look at diet? Eliminating gluten has helped some people as well as reducing carbs.

Unfortunately Fibro is a medical mystery and what works for some people doesn't work for others. It's all a question of finding what works for your daughter.

Have you got an appointment with a Rheumatologist to get a diagnosis and rule out other possibilities?

Fluffy Unicorn

Haven't seen Rheumatologist yet.

So far doctors have only offered anti-depressants for their side effect of muscle pain relief, NOT because of depression, how bizarre is that?? Refused anti-depressants but no other pain relief given.

Have been down alternative complementary route, acupuncture, reflexology, bio-energy healing, herbal remedies etc etc.

Am reluctant to change her diet as at 14 she needs broad range of food, diet is pretty good. On Vitamin D3, Krill oil, magnesium supplements.

I feel exercise would be beneficial but she's very sore

Oryx

The benefits of gluten free are anecdotal, but it is possible to go gluten free without any radical change of the overall diet, if you felt it was worth trying.

Swimming can be quite good. If just to get moving with no pressure on the joints. Stream room can also help with joint stiffness and pain.

Try and set up a regular schedule of exercise as planning can help to combat fatigue, I.e taking a nap earlier, or going swimming earlier in the day. Maybe go with a friend/mum as a motivation.

Tropheus

Anti depressants can be beneficial for Fibro. Depression and anxiety are common symptoms. It has also been shown the Fibro patients don't produce enough serotonin in their brains.

kangaroo

kangaroo wrote: »

Exercise is often recommended for Fibromyalgia. But it is far from a panacea and many people can't tolerate it well esp. if they have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is often co-morbid with Fibromyalgia.

I think I might not have been clear enough: I was trying to say that exercise might be recommended, but one should be cautious about claims about it and its use.

[In my own case, my ME/CFS illness was more Fibromyalgia-like for the first few years (teens and early 20s): I wasn't that tired but had lots of muscle/tendon/ligament problems and had over 100 physio appointments who were always trying to convince me to exercise which I tried to do religiously 3-4 times a week as best I could (mainly in a swimming pool - if I had a problem with a particular muscle I'd do strokes using other muscles). However, after a setback and my symptoms worsening, exercising then made me a lot worse and unfortunately I got stuck bad. Doesn't happen to everyone but I don't like to see it happening to others so like to mention it]

Amazingfun

Maybe this is worth considering:

Diagnosis: Fibromyalgia….says your doctor. But did you know there’s much more to this story than your doctor has been taught or explains?

Fibromyalgia (FMS) is the official clinical label to describe chronic musculoskeletal pain or tenderness--i.e. in your joints, tendons, muscles or other soft tissues. You might feel the pain no matter what you are doing, or experience it with pressure on a particular area of your body. There are at least 18 identified “tender points” associated with fibromyalgia. All the latter discomfort is all too real. Depression, anxiety and even headaches can accompany the syndrome of Fibromyalgia for some, as well.

But what’s not real is to assume this is a “disease” all it’s own, i.e. not related to hypothyroidism. It may very well be! Quoting from Dr. John S. Lowe: in most cases, fibromyalgia is the result of “hypometabolism of select tissues”, i.e. “the clinical manifestation of inadequate thyroid hormones due to thyroid hormone deficiency and/or resistance.” (page 75, The Metabolic Treatment of Fibromyalgia, 2000)

http://www.stopthethyroidmadness.com/fibromyalgia/

Irishchick

Fluffy Unicorn wrote: »

Haven't seen Rheumatologist yet.

So far doctors have only offered anti-depressants for their side effect of muscle pain relief, NOT because of depression, how bizarre is that?? Refused anti-depressants but no other pain relief given.

It's not bizarre at all.

Anti depressants seem to still have a bad name in this country but some of them are used for other purposes

Is it amitriptyline your referring too? It used to be used as an anti depressant but it is now used in low doses in cases of fibromyalgia and RA. It's a very effective pain killer. I took it for a short period for sciatica caused by arthrits and a friend of mine takes it for fibromyalgia.

Fluffy Unicorn

Yes I believe amitriptyline was being offered. What is a safe/low dose, any side effects? will it be a long term thing, remember my daughter is only 14

Tropheus

It may be worth a try. That's a decision for you and your daughter to make. Doctors generally start with the lowest therapeutic dose and go from there.

Irishchick

Fluffy Unicorn wrote: »

Yes I believe amitriptyline was being offered. What is a safe/low dose, any side effects? will it be a long term thing, remember my daughter is only 14

I'm not a doctor so I can only tell you my experience.

The only side effect I had was sleeping very heavy and it being a bit harder to get up in the morning.

princess-lala

I slept like a baby any time I was put on it. My moods were always a mess though on it

Fluffy Unicorn

princess-lala wrote: »

I slept like a baby any time I was put on it. My moods were always a mess though on it

Thats what I'm afraid of, especially if treatment is longterm

Fluffy Unicorn

Irishchick wrote: »

I'm not a doctor so I can only tell you my experience.

The only side effect I had was sleeping very heavy and it being a bit harder to get up in the morning.

Did you function ok when you got up and going? did you appear any different to your friends eg heavy eyes, never excited or sad just same regardless of conversations, situations

Angel Knightess

Personally I didn't find amitriptyline to be of any help with pain or sleep. I agree that exercise is helpful but only if you take it easy. Walking is ideal. A little light jogging on the spot can be good when your muscles are adequately warmed up.
Slightly changing your diet can also help. I found the candida diet where you cut out/down your intake of sugar and yeast for a while to be quite helpful. Trying to keep a steady temperature at home is vital as changes in temperature/weather can drive the symptoms of fibromyalgia mad. Sleep is vital. The less sleep you get, the worse the flare up or symptoms will be. Fresh air, video games (rpgs and certain other games can make you super sleepy but never puzzles), a good book, basically anything you can distract yourself with to help you off to sleep.

Being a fibromyalgia sufferer for over thirteen years, I have found that its the nature of the pains, (burning, tingling, darts, throbbing), as well as their suddenness that causes me so much anxiety, which in turn fuel the pains. Then there's the stiffness, dry mouth and general feeling of unwellness as well as other things that can make up the symptoms of fibromyalgia that frankly can do your head in. Tell your daughter that its okay to come and tell you when she's feeling down/pain, as its likely she might be worrying and frustrated at the whole thing and less likely to share. Keeping a diary, not just to write any symptoms but pretty much anything is helpful. If your daughter is worried about school and the future, she shouldn't be. My fibromyalgia made attending school impossible so I didn't do too well and unfortunately it took years before any doctor took me seriously and I got diagnosed, but I'm attending college part-time now.

I am on my last nerve with Fibro lately.
My pain levels during the nlight are very severe, constantly interupting my sleep. I feel like a pinball machine, in that I light up with pain all over constantly .

Im so tired today. The Lyrica is good for helping sleep, but I feel like Ive been ran over by a very large full truck today.


Im in a brain fog as well.

Just feel is getting really worse than ever.
I feel like bursting into tears,but I doubt I have either any left, or the energy to produce them

Any one else ever get like this?

Graces7

Irishchick wrote: »

It's not bizarre at all.

Anti depressants seem to still have a bad name in this country but some of them are used for other purposes

Is it amitriptyline your referring too? It used to be used as an anti depressant but it is now used in low doses in cases of fibromyalgia and RA. It's a very effective pain killer. I took it for a short period for sciatica caused by arthrits and a friend of mine takes it for fibromyalgia.

I was surprised to be given this in the aftermath of a shattered wrist.
I hate anti ds and after one 24 hour period of rip van winkle side effects stopped taking it ..but yes it is widely prescribed for other thing than depression

Graces7

Jake1 wrote: »

I am on my last nerve with Fibro lately.
My pain levels during the nlight are very severe, constantly interupting my sleep. I feel like a pinball machine, in that I light up with pain all over constantly .

Im so tired today. The Lyrica is good for helping sleep, but I feel like Ive been ran over by a very large full truck today.


Im in a brain fog as well.

Just feel is getting really worse than ever.
I feel like bursting into tears,but I doubt I have either any left, or the energy to produce them

Any one else ever get like this?

Yep. Add to M.E the Raynauds and arthritis.. at screaming pitch at night..would not take Lyrica and could the tiredness be partly side effects? The only thing
that works is Tylex at night and yes that helps sleep mightily I can cope knowing I can take that.
I am a stubborn old wan and refuse to give up the work i do and it helps to be doing for others
PS I get SAD and this is the very nadir of the year so that too is part of it

Graces7

Graces7 wrote: »

Yep. Add to M.E the Raynauds and arthritis.. at screaming pitch at night..would not take Lyrica and could the tiredness be partly side effects? The only thing
that works is Tylex at night and yes that helps sleep mightily I can cope knowing I can take that.
I am a stubborn old wan and refuse to give up the work i do and it helps to be doing for others
PS I get SAD and this is the very nadir of the year so that too is part of it

Cheers Grace.

I take Tylex too but they can be addictiv, and I try to take them from time to time, as opposed to every day.You're right aout the Lyrica, tiredness is a side effect. all riht. I felt stoned all of yesterday

Wish I had your strenght and your back bone Grace

Graces7

Jake1 wrote: »

Cheers Grace.

I take Tylex too but they can be addictiv, and I try to take them from time to time, as opposed to every day.You're right aout the Lyrica, tiredness is a side effect. all riht. I felt stoned all of yesterday

Wish I had your strenght and your back bone Grace

Yeah I know re addiction but at 71 years old who cares! I was given Tramadol and that is still in the cabinet as I will not touch that...I am not using more tylex than I used to o that is fine and I do not take it if I am driving etc

Tylex works and gives me respite and lets me sleep. I take aspirin or brufen during the day... alternating pain killers make them more effective

I lost literally decades to misdiagnosis and medical abuse and am determined not to lose any more. And I know that dumbing down emotions means that you dont develop strength. Sure I get down and fearful but I ride it and it passes and the next time it is easier to do that. Some nights I am in sheer hell but then I get up, make a hot drink, read and knit a while. It is all a part of this illness.

For me, being truly needed has helped hugely. Being able to help others even from my bed. My family who I will probably never see again in this life love me. And need me. These are my golden years.

Old saying.. there are always two men in my bedroom.... Arthur Itis and Will Power

Long weekend trading ahead and it will be hard work but! Somehow will get through it and no one will ever know how hard it is. All smiles! As we should be for others. Out at Dingle! Then Tralee..

It will get easier after the shortest day I promise. Hang on in there! Treat yourself to something you really love

Blessings and peace this night

Arataki

I was diagnosed with Fibromyalgia a few months ago. At first I found that Lyrica was a big help pain-wise but not so much now. I agree that Tylex is a big help in conjunction with it though. I was also put on Amitriptyline which stopped the migraines(until my current does of Lyrica triggered them again) and has me sleeping like a baby every night. I don't have any side effects from that but the Lyrica does make me incredibly tired. On top of the fatigue. I have heard good things about Cymbalta as an alternative to Lyrica though.

kissmequick

Not diagnosed am waiting on a referral, am 99% certain this is what I have. Currently my shoulder-blades, one particular place on the inner-edge of my under-arms and this darting pain in breasts are all literally just taking my breath away! Feel like I've been having a heart-attack since I woke up this morning!! My right leg from under the knee-cap down just feels like one gigantic bruise! Back's been playing-up all week, it's hell. My sides and hips are joining in with their own throbbing melody. I think my sides and hips tend to react / or participate when "everything-in-general" is sore lol. That's when they seem to show up for the party when everything else is sore. They must feel a little left-out haha.

When my back first started getting bad earlier in the week when it was snapping and cracking and popping for Ireland and ripping across me lol, the tingling in the front at my tummy was crazy.

It might be a rather odd thing to say but I hate my shoulder-blades! When my shoulder-blades get sore it really makes me depressed 'cos it immobilizes me and stiffens the whole upper half of my body making me freeze up and then my glands, neck, and arms and possibly going down into my sides get / feel the knock-on effect then and all those parts seize up on me! Gahhhhhh stoopid body! At least with back-pain you can kind-of treat it, heat or cold usually helps. But with this shoulder-blades thing, half my body stiffening and seizing up boyyyyyy is it depressing! There isn't really anything I can do to un-freeeze a robotic stance lol. Having to learn strict patience is the only positive thing to take out of it all haha!!

Oops sorry for me rambling on there didn't mean to! What I wanted to ask, was, do people experiencing shoulder-blade pain with this, or neck / glands / under-arm pain, - find that it takes their breath away, makes them short-of-breath / racy etc. Or is this just me?

Graces7

rosesareredNO wrote: »

Not diagnosed am waiting on a referral, am 99% certain this is what I have. Currently my shoulder-blades, one particular place on the inner-edge of my under-arms and this darting pain in breasts are all literally just taking my breath away! Feel like I've been having a heart-attack since I woke up this morning!! My right leg from under the knee-cap down just feels like one gigantic bruise! Back's been playing-up all week, it's hell. My sides and hips are joining in with their own throbbing melody. I think my sides and hips tend to react / or participate when "everything-in-general" is sore lol. That's when they seem to show up for the party when everything else is sore. They must feel a little left-out haha.

When my back first started getting bad earlier in the week when it was snapping and cracking and popping for Ireland and ripping across me lol, the tingling in the front at my tummy was crazy.

It might be a rather odd thing to say but I hate my shoulder-blades! When my shoulder-blades get sore it really makes me depressed 'cos it immobilizes me and stiffens the whole upper half of my body making me freeze up and then my glands, neck, and arms and possibly going down into my sides get / feel the knock-on effect then and all those parts seize up on me! Gahhhhhh stoopid body! At least with back-pain you can kind-of treat it, heat or cold usually helps. But with this shoulder-blades thing, half my body stiffening and seizing up boyyyyyy is it depressing! There isn't really anything I can do to un-freeeze a robotic stance lol. Having to learn strict patience is the only positive thing to take out of it all haha!!

Oops sorry for me rambling on there didn't mean to! What I wanted to ask, was, do people experiencing shoulder-blade pain with this, or neck / glands / under-arm pain, - find that it takes their breath away, makes them short-of-breath / racy etc. Or is this just me?

Glandular pain is normal for M.E etc and for me is a welcome indication that the illness is in fire mode and to take it easy .. what used to scare me was the chest pain that is ONLY MUsCLE SPASMS.

Graces7

Arataki wrote: »

I was diagnosed with Fibromyalgia a few months ago. At first I found that Lyrica was a big help pain-wise but not so much now. I agree that Tylex is a big help in conjunction with it though. I was also put on Amitriptyline which stopped the migraines(until my current does of Lyrica triggered them again) and has me sleeping like a baby every night. I don't have any side effects from that but the Lyrica does make me incredibly tired. On top of the fatigue. I have heard good things about Cymbalta as an alternative to Lyrica though.

The less I take the better I feel about the illness. had years on too many drugs. I prefer to feel the illness than the side effects!

eisenberg1

Can anyone tell me how badly the Irish climate affects Fibromyalgia?

That is to say, do people in say, Spain suffer as badly?

Graces7

eisenberg1 wrote: »

Can anyone tell me how badly the Irish climate affects Fibromyalgia?

That is to say, do people in say, Spain suffer as badly?

I knew a fellow M.E sufferer who used to spend each winter in Australia as the Irish weather made her worse. Add the damp to the dark and you can see why. Interesting re Spain!

isabelle16

Hi There, just came across your post. I really feel for you and your daughter having to deal with this dreadful condition. I will give you a quick synopsis of my story which may help. Diagnosed as depressed and suffering from anxiety after an incident in work in which i had to hand in my notice. Also, alot of family issues going on at the time. For two years i suffered really bad sleep, low bp, aches and pains, chest pain etc...the list was endless.

After two years of no relief, i referred myself to dr mary Ryan, consultant endocrinologist in Limerick. (My gp was not impressed, but i did not care at this stage). Anyway, she examined me. I had very sore shoulderblades and chest. She commenced me on amitriptyline at night which really helps with the sleep. Also, tested my thyroid level, which was not off the chart, but commenced me on eltroxin. I think the theory behind this is to activate a sluggish thyroid, which helps with the symptoms. Also, made lifestyle change s. Sleep really helps with my memory and energy. I used to work in a stressful office environment, but now know that i cannot do that work anymore. I am in the process of changing careers.

Basically, dr Ryan has done more for me in the last nine months, than my gp in the previous two years. If you have any more questions, let me know.

Cathalniamh

Hi There
Please google doctors living in cork who specialise in fibromyalgia,a lady doctor will come up,I have just had a consultation with her and feel positive going forward with her theories that she can get me functioning again,a bit left field but as I have spent last 20 years going down traditional route with no relief I am willing to try anything.i hope your daughter does not have this horrible condition and with correct early intervention she has the happy pain free life we all deserve .

LegacyUser

Hi there, thanks for that info. Just wondering what is her theories around this condition? I am currently on eltroxin, as the consultant i am attending believes that it is related to the functioning of the thyroid. Also, lifestylefactors are also a big issue?. Currently trying to wean myself off processed sugar. Went to cinema yesterday with my little girl and has a few pick n mix and felt horrible afterwards???? Sounds bizzarre i know, but diet seems to be an issue with me. Also, need lots of rest and limit stress. I just like to try and keep myself informed of anything that may help. There was two very interesting interviews in the sunday indo yesterday. One model who had ME and maxi who has burnout.

isabelle16

Hi, actually forgot that i posted on this forum. Can you tell me a little more about this doctor. What has she advised to do? Also, there are two good articles on the sunday indo yesterday about chronic fatigue and ME.

Cathalniamh

Hi,if you look up quantum intergative medicine.dr downes works on theory that if your body in out of sync how can it repair itself.i have tried everything ,been on every medication and spent thousands over the last 20 years trying to break free from this invisible prison of pain.after my first vist last week i cant stop drinking water and my sleep has improved.dr downes worked on my major sore points with some sort of machine.the words that have stuck in my head after consult were that she doesn't deal with hope.if your car breaks down you wouldnt hope that the mechanic could fix it,you would expect him to rely on his training and fix it.i dont understand exactly what is being done to reduce my pain levels but i trust that dr downes will rely on her training and that i will regain me.will keep updating progress.its outside my comprehension but that doesn't mean it can't work.think of all the inventions and impossibilities that have become part of every day life.

Anomic

Ive been to Dr Downes, as have other FM sufferers that I know, and imo shes a complete con woman. Charges 240 euro for initial consultation , which amounted to little more than rubbing my arse for 30 mins, when I asked what she was doing, she told me I wouldn't understand what she was doing as she was trying to connect with my energy on a quantum level. The first words out of her mouth were " i can cure you" , which should have been enough of a red flag, but I stayed for the session. SHe tried to talk me into 200 euro worth of supplements, and said I wouldn't get better without taking them.

Her website says the program is based on quantum physics , which I only spotted after I met her. I'm no scientist , but i'm fairly sure having my arse rubbed doesn't qualify as practicing quantum physics. Stay well away.

Ask your GP for a referral to a Rheumatologist, if you check with the Fibro Ireland page on FB , there is a list of recommended Fibro friendly Rheumotologists . Unfortunately, there isn't much they can do , but they will check Thyroid function and rule out arthritis and other similar illnesses, but will prob refer you back to your GP after a treatment programme has been set up. Ive been diagnosed with over 12 years, and after trying pretty much all the recommended meds, the only one that helps without massive effects ,is Tramadol.

eisenberg1

Thanks for that Anomic, I was gonna give her try (for my daughter) but I think a miss is in order. I had enough of that sort of crapnwhile seeking treatment for one of my other children's eczema. Inbelieve being positive can help but the witch doctors take the biscuit.

Fluffy Unicorn

Hi, did you Google practitioner who model believes helped to cure her?

isabelle16

Can you be more specific? Cant find anything about that. Thanks.

Pie and Mash

I feel bad for your poor child, I hope you find something to give her relief.

Jake1 wrote: »

I am on my last nerve with Fibro lately.
My pain levels during the nlight are very severe, constantly interupting my sleep. I feel like a pinball machine, in that I light up with pain all over constantly .

Im so tired today. The Lyrica is good for helping sleep, but I feel like Ive been ran over by a very large full truck today.


Im in a brain fog as well.

Just feel is getting really worse than ever.
I feel like bursting into tears,but I doubt I have either any left, or the energy to produce them

Any one else ever get like this?

I've gotten so bad lately I went back to gp to discuss cymbalta in the hope it will kill two birds with one stone ......I live in hope. Hope you feel better soon.

Fluffy Unicorn

isabelle16 wrote: »

Can you be more specific? Cant find anything about that. Thanks.

Read article about the model, get name of practitioner who she believes cured her, Google the name, read associated articles. It's a reminder to be careful when choosing practitioners in any field!

eisenberg1

Fluffy Unicorn wrote: »

Read article about the model, get name of practitioner who she believes cured her, Google the name, read associated articles. It's a reminder to be careful when choosing practitioners in any field!

But who is the model you speak of?

Fluffy Unicorn

isabelle16 wrote: »

Hi, actually forgot that i posted on this forum. Can you tell me a little more about this doctor. What has she advised to do? Also, there are two good articles on the sunday indo yesterday about chronic fatigue and ME.

Sorry if there's confusion, model is in one of articles in last Sunday's Indo!

kissmequick

20 years?!? Mother of all that is holy twenty years........ I may have only another 17 to go so.

Twenty years of. This?!? I do congratulate you wholeheartedly.

holy guacamole

Have suffered from fatigue-like symptoms, digestive issues and general aches for a few years. Spent ages going back and forth with doctors, specialists and the like without really getting anywhere. They suggested I may have had fibromyalgia or ME but because nothing was showing up on any of my tests they were reluctant to diagnose anything.

At this point they more or less washed their hands of me with their attitude being "if we can't cure it with medicine then we can't do anything at all." Was incredibly disheartening and forced me to go down the alternative medicine route.

I was told about Plexus Bio-Energy and the work done by Michael O'Doherty in Ennis. Although I was sceptical I decided to make an appointment and see if he could help me. That was 18 months ago and I have improved greatly since. I'm not yet back to full-health but I'm confident I will eventually be and it's all down to my visits to Ennis.

It's pretty difficult to explain what they do in the clinic, the treatment itself involves regulating the energy flow in your body so that it can get to work in healing you. It's not like reiki or any of those types of treatment, it's a science. They also examine your diet, recommend changes and supplements to boost your system and give you breathing exercises designed to keep your energy flowing.

Again I'm aware that to a lot of people this will seem like hokum, especially when you've watched the videos on their website. But it's working for me and if I hadn't gone there for treatment I'd still be struggling on a day-to-day basis with almost zero quality of life. As it is I'm looking forward to eventually getting my life back on track and feel hopeful about the future.

WoollyWoman

Fluffy Unicorn wrote:

Can anybody give me any advice to help me with my 14 yr old daughter who appears to have fibromyalgia? She has a lot of pain, only attending school part-time.

Hi there, this is my story. Sorry for the essay!

I started to experience chronic fatigue symptoms from before the age of 14. (c.1996) Missing out on half of 1st year and half of second year at school.

Like many others here, I attended numerous consultants and alternative practitioners, eventually being diagnosed with Fibromyalgia in 2010 by a rheumatologist. I was prescribed Cymbalta which I took for 10 months in order for me to be able to function at work. The side effects from Cymbalta were worse than my symptoms. I had to quit my job as I was fit for nothing.

I came off the medication and decided to try lifestyle changes instead. Slowly building up a daily walking routine. No alcohol, no late nights out etc
This all worked really well, I felt quite good at times but I still had a lingering drunken feeling in my head, which I hear people calling Fibro Fog. Someone mentioned Bio-Energy in a previous post, I had 3 sessions of this and I have been painfree since.
I had a baby last July and the sleepless nights that are involved with all of that really took their toll and left me scared of my ability to care for my baby.
My mother is addicted to watching videos on YouTube and happened to send me a link to an American Chiropractic called Dr John Bergman. He reckons that spine adjustments and a clean diet will greatly reduce Fibromyalgia symptoms advocating a gluten and sugar free diet.

I haven't attended a Chiropractic yet but I have been off the gluten and sugar since November last year. Having suffered with most of the symptoms associated with Fibromyalgia for the last 17 years, I have to say I have never felt better than I do now.

I feel alert, energetic and painfree.

As a teenager I felt very alone, confused and very embarrassed about my tiredness. I still do, as some perceive it as laziness.

My symptoms prevented me from doing well at school but I went on to college and excelled in my chosen subject.

I hope you find the right mix for your daughter and wish you both the best for the future.

Fluffy Unicorn

Fluffy Unicorn wrote: »

Can anybody give me any advice to help me with my 14 yr old daughter who appears to have fibromyalgia?
She has a lot of pain, only attending school part-time.[/QUO

Following on from my original posting, my daughter has now been seen by neurologist, rheumatologist, psychologist, psychiatrist as well as general paediatric consultant. All believe she does not have fibromyalgia but back at original diagnosis of Post Viral Fatigue Syndrome, cuased by exposure to Glandular Fever 18 months ago.

Whatever name they put on it she has chronic pain all over body, has no quality of life, attending very little school. I fought against use of anti-depressant type drugs offered at early stages even though they were to assist with pain. At end of December she started on Surmontil (trimipramine) to lift her mood as we were becoming very worried about affect illness was having on her. She is currently on 100mg, mood has improved. It was hoped mood would lift enough to make her want to exercise. However exercise really hurts, can set her back.

Yesterday she saw a Pain Management Consultant who is starting her on Neurontin, gradually increasing dose to 300mg, 3 times a day. This will be in conjunction with Surmontil. I am worried about all this medication being given to a previously healthy, happy, enthusiastic teenager, but I cant bear to see her suffering anymore.

Any views?
By the way has anybody tried hypnosis or am I over-simplifing the process of neurotransmittors transmitting garbled messages to neuroreceptors in brain or other way around?

Very, very, confused

holy guacamole

Fluffy Unicorn wrote: »

Fluffy Unicorn wrote: »

Can anybody give me any advice to help me with my 14 yr old daughter who appears to have fibromyalgia?
She has a lot of pain, only attending school part-time.[/QUO

Following on from my original posting, my daughter has now been seen by neurologist, rheumatologist, psychologist, psychiatrist as well as general paediatric consultant. All believe she does not have fibromyalgia but back at original diagnosis of Post Viral Fatigue Syndrome, cuased by exposure to Glandular Fever 18 months ago.

Whatever name they put on it she has chronic pain all over body, has no quality of life, attending very little school. I fought against use of anti-depressant type drugs offered at early stages even though they were to assist with pain. At end of December she started on Surmontil (trimipramine) to lift her mood as we were becoming very worried about affect illness was having on her. She is currently on 100mg, mood has improved. It was hoped mood would lift enough to make her want to exercise. However exercise really hurts, can set her back.

Yesterday she saw a Pain Management Consultant who is starting her on Neurontin, gradually increasing dose to 300mg, 3 times a day. This will be in conjunction with Surmontil. I am worried about all this medication being given to a previously healthy, happy, enthusiastic teenager, but I cant bear to see her suffering anymore.

Any views?
By the way has anybody tried hypnosis or am I over-simplifing the process of neurotransmittors transmitting garbled messages to neuroreceptors in brain or other way around?

Very, very, confused

Please see my post above regarding Plexus Bio-Energy. I'm convinced that this method of treatment will be helpful for your daughter and at the very least is something worth trying.

Feel free to pm me with any queries regarding the treatment if you don't want to discuss it on here.

Fluffy Unicorn

She tried Plexus Bio Energy healing last August on 4 consecutive days. While she felt heat going through her body it didn't have any other effect. We didn't go to Michael O'Doherty in Ennis but to somebody who was trained by him (or trained by somebody who was trained by him!), living 30 mins away from us. Travelling to Ennis is just too difficult for her, approx 3 hrs away.

holy guacamole

Fluffy Unicorn wrote: »

She tried Plexus Bio Energy healing last August on 4 consecutive days. While she felt heat going through her body it didn't have any other effect. We didn't go to Michael O'Doherty in Ennis but to somebody who was trained by him (or trained by somebody who was trained by him!), living 30 mins away from us. Travelling to Ennis is just too difficult for her, approx 3 hrs away.

Ah I see. You weren't tempted to go back for a second treatment? I know it's very expensive so it's not something you can commit to unless you're convinced.

All the best with everything anyway, really hope your daughter gets better.

Anomic

Hi Fluffy Unicorn, Neurontin is really good, helps with the pain, unfortunately in my 20 years of fibro, nothing has ever helped with the tiredness, you just get used to it. Best thing I can advise is Yoga or Pilates, made a massive difference to me, its really tough at the start, but if you can get her to stick with it, at her age I'd say its her best chance. If you can get a recommendation for a good teacher and maybe do it with her at her own pace, it really helps strengthen the muscles and the pain is much more manageable. Running,cycling even swimming are a big no no for me.

I've tried all the meds available for fibro and while they did help a bit initially they turned me into a bit of a zombie with massive weight gain, which just made everything worse. I lost the weight, and gave up all the meds other than Tramadol for pain when I need and it suits me a lot better.

Diet does make a difference, but only from the aspect of certain foods seem to mess up my stomach. Ive done gluten free , dairy and sugar free at different stages for about 6 months each, and no drastic improvement. I've never tried hypnosis , but I know 2 frinds with fibro who have and it made no difference.

I'd agree with you about the Surmontil , but watch out for weight gain and being a bit doped out of it in the morning. It makes it a lot harder to muster up the enthusiasm to do any sort of exercise. On a side note has her thyroid function been checked? If not well worth getting a full screening done, as all the new Fibro research says there is a possible link between the two. Its not an issue for me, but it was for a friend.

Also theres a good group on Facebook called Fibro Ireland if you want to talk to others about what worked and didnt.

I hope she finds a measure of relief. Best of luck.

Fluffy Unicorn

Yes her thyroid function has been checked, its ok.
Currently neurotin is not helping, dose gradually being increased.
Surmontil is supposed to help her want to exercise, but its too painful. She is going to try pilates/yoga if we can get an appropriate class.
We would love to go for a family meal but the noise of cutlery, crockery, coffee machines, people talking etc gives her a severe headache as does bright light.
2 weeks ago during a warm spell I got her to sit outside in garden to have lunch, 10 mins in brightness led to 3 hrs lying down in dark room.
Friends visiting helps to keep her spirits up but it does set her back.

filo87

Fluffy Unicorn, have you looked into a condition call Ehlers-Danlos Syndrome? It's often misdiagnosed as fibromyalgia. More info here: www.irishedsandhms.ie