Struggling with pain caused by fibromyalgia - Pain Concern

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Struggling with pain caused by fibromyalgia

KatieERoberts profile image
48 Replies

I am currently going through a 4 year long process of being diagnosed with fibromyalgia, nobody has known why ive been in so much pain for so long bit finally ive found a consultant that believes i have fibro like i have thought all these years. My pain is 24/7 i cant sleep ive lost a ridiculous amount of weight because i cant eat, i pass out and faint due to all this. I am currently on naproxen but they give me sickness and blurred eyes. Ive been told if i get diagnosed with fibro that i will be put on amitriptyline which worry's me as i am only 20 i dont ant to be on drugs all my life but im having to come to terms that i probably will have to be. Anyone that has fibro or is on amitriptyline could you please give me any insight, its all very new and quite scary to me and im never one to ask for help or advice but i know i need it. Many thanks x

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48 Replies
Madlegs1 profile image
Madlegs1

Hi Katie- there is a dedicated ' Fibromyalgia site ' on Health unlocked. You might get a better response there.?

Good luck.

KatieERoberts profile image
KatieERoberts in reply to Madlegs1

Ive posted in there too, thank you

luckyjim profile image
luckyjim

Katie

I've been taking amitriptyline in varying doses for 6 years and had no problems with it. It seems to be one of those multi purpose drugs, low doses to aid sleep, larger doses to combat depression, neuropathic pain etc.

My experience is that it is one of the less scary medications that are likely offered.

Good luck in finding what is right for you and hopefully if amitriptyline that it does some good.

Best Wishes

Jim

KatieERoberts profile image
KatieERoberts in reply to luckyjim

i hope it works for me the way it has for you, the fact it is an antidepressant scares me but i know its what i need at the moment

thank you

suep40 profile image
suep40 in reply to KatieERoberts

Hi,

I understand exactly what you are saying about it being an anti-depressant. I had a really good consultant explain to me that they weren't primarily treating me for depression but due to being in constant pain it was inevitable that depression sneaks in. I like you don't like the idea about having to be on painkillers/anti depressants all the time but unfortunately its the only way we can have any quality of life as without it we would be worse.

A lot of living with pain is about acceptance. I struggle to accept some days that I cant do normal things and push myself too far, I always end up paying for it and as time goes on I know I will be able to push forward less but coming on this site reminds me that I am not alone.

Take care,

Sue

Steve49 profile image
Steve49

Hi Katie.

I have had Chronic Pain since 2005 down my right side following botched Steriotactic Radiation Surgery by the NHS.

My Stroke in 1998 at the age off 32 effected my left side.

This is when I started using Amitriptline & to be honest one off my better medications.

Due to taking it at night time we miss out on the side effects but we still take all off the benefits.

You will have nothing to worry about as they should start you on 5mgs per night.

My starting dose was that which made a real difference, unfortunentley my health/condition has nose dived since 1998.

Unfortunately my "parachute" has still not come out too date.

So my health is still "diving"

So all off my meds are at breaking point.

Meaning my Amitriptline is now at 150mg (Max) per night.

I spent last night in hospital due to nerve damage in my bladder.

When the doctor came to admit me at 2am this mourning she was suppried to note that I was on such a high dose.

Great time as I went to A&E at 4 o'clock in the afternoon.

So much for the 4hr government target.

Mind you I keep being hidden within the hospital.

I always wanted a "Guided Tour" off the hospital but not at that time !!!

At one point I thought that I might come out with a broom somewhere were the sun doesn't shine !!!!!!!!!

Opps Sorry !!!!!!!!

Steve.

KatieERoberts profile image
KatieERoberts in reply to Steve49

I am very nervous about the side effects of it and being only 20 i am worried ifiam taking such a strong drug all my life the effects it could have on my body. I want children and a normal life and there's nothing to say Amitriptline will prevent this but lets be honest such a strong drug cant be good to take long term (for the rest of my life say another 50 years).

So far everyone has said its helped with their pain and all in all thats what i need at the moment as i will never have a normal life.

Hospitals 4 hour waiting time is also a joke, ive spent plenty o time in there and their targets are somewhat none existent.

Thank you for your help

Steve49 profile image
Steve49 in reply to KatieERoberts

Hi Katie.

I have been taking Amitriptline for sometime now & the only noticeable side effect I notice is that it knocks me out at bedtime.

I use this in my favior as I take it just before bed time.

My chronic pain is at it's worse then so they benefit me greatly.

You have nothing to be concerned about, any side effects work during sleep time.

To be honest I'm on even stronger meds now including Amitriptline.

Yes it will hopefully help your pain, you can talk this through with your consultant/GP if you are still worried.

As well as asking us on here, you can self manage your meds as well so that you don't exceed them giving you all off the side effects.

Please ask for further help if you need anymore.

Steve.

KatieERoberts profile image
KatieERoberts in reply to Steve49

Brilliant, thank you for your help. As long as i can sleep and be out of pain for a few hours a day thats fine by me

Thank you

Steve49 profile image
Steve49 in reply to KatieERoberts

Hi Katie. That's no problem at all, yes hopefully Amitriptilne should help you. I hope that you don't mind me asking what other drugs that you take ???

Steve.

KatieERoberts profile image
KatieERoberts in reply to Steve49

At the minute i am taking naproxen but i hate it. It dosent take any pain away and makes my eyes blurry

Steve49 profile image
Steve49 in reply to KatieERoberts

Hi Katie.

I hope that you don't mind me asking but how long have you been taking naproxen ??? Can you see if there is something else that you can take instead ??? This is a new one on me, I will check it out if you want ???

Steve.

KatieERoberts profile image
KatieERoberts in reply to Steve49

I've been taking it about 6 months now. There is something else my doctor has sorted me prescribed me that I should get tomorrow so hopefully that should help.

Check it out if you could please, Thank you

Steve49 profile image
Steve49 in reply to KatieERoberts

Hi Katie.

That's great - will this new med replace the naproxen ?? Can you please let me know what the doc has got tomorrow for you ??? I hope that you don't mind me asking !!! Please let me know if so but I really want to help/support you if that is fine !!! Yes I will give it a look for you as it is a new one on me !!! Don't worry I will be on the case for you. Steve.

Steve49 profile image
Steve49 in reply to KatieERoberts

Hi Katie.

I have just had a look at naproxen.

Do you know why they gave you this drug in the 1st place ???

I will look into it further if you would like ???

Steve.

Hayesider profile image
Hayesider

Hi Katie,

Firstly, don't think all the downs you will read on this site apply to you, sometimes, I think we should be posting only good positive thoughts, not necessarily how Fibro affects us. We are all different, so what affects some may not affect others. You need to balance the positives against the negatives, and the positives should win very time.

Firstly, I would question 'naproxen'. My surgery have already moved all patients off it, due to NICE guidance indicating problems. Sorry to spook you, but at your age, you need to be on non-restrictive meds, not ones with question marks. Every time something is prescribed, ask why, and what is the NICE guidance (National Institute of Chemical Exelance), who authorise the medications we can take.

It shouldn't take four years to diagnose, just months if that. There is specific NHS Guidance on how to diagnose, and most GPs should be able to do this, especially the younger GPs, as their training is more up to date. Go to the NHS website and research Fibro, if need be, email the guidance to the surgery, for the attention of your GP.

Amiltriptyline is a wonderful medication if used correctly. Small doses can help at the start of the day, to help other pain meds be effective. I take 10mg for just/only this reason in the mornings. At night, up to 100mg can be prescribed to help sleep, I take 75mg and it really helps. What you need to do with your GP, is slowly (and I mean slowly), increase the dose every week, until you see some benefit or not. If no benefit, then come off over the same period of time.

Sorry this is so long, but at your age, you have major health issues that at 65yrs, I don't need to worry about. Please don't just follow the downers, yes, some of us moan about pain/lack of sleep/hospitals, but really, we are a very bunch that support each other, what ever the weather.

So finally, before my friends accuse me of monopolising you, a great big welcome to our family xxx

Hay hay Haysider xx

KatieERoberts profile image
KatieERoberts in reply to Hayesider

I try to look at the positives but when i have a hard day its very difficult to see the bright side, but im getting there.

I hate naproxen, the side effects it gives me are horrific, it makes me not want to eat so ive lost alot of weight, it also makes my eyes blurred so i cant take it full time like when im driving or at work on my computer or i literally cant see and thats never going to end well.

My consultant mentioned another tablet i could try, beginning with e i cant remember its name, my moms taken my prescription to the doctor and i should get them Friday so hopefully they are better until my test results come back negative (99% sure they will, everything about me has been checked) then i will be fully diagnosed with fibro and Amitriptline will be prescribed to me.

Ive been seeing the same gp for 4 years and during this period have mentioned fibro several times as my beauty therapist has it so i knew roughly about the symptoms etc and my gp didnt seem to think this was the case. Because my vitamin d is so low she thought it was to do with that causing weakening in my joints but the last yea its not my joints on their own anymore its my whole body, this is when she started to think it was something else. Ive seen sent to rhumatology 3 times and released saying its nothing to do with them, 3 times. Until last week when i saw the best consultant ever and she fully believes its fibro, so do myself, my mom and family as ive been checked for everything else that causes my symptoms,my doctor even checked me for different cancers. I will send more info to my doctor butim hoping this consultant takes control as she seems to know what shes doing, my doctor is older i dont think she knows much about fibro.

That is my main worry, my age, i have this for the rest of my life and i think mentally thats what im struggling to deal with at the moment, medications i take now will effect my life long term.

Your information has been very helpful, thank you

katie xx

Hi KatieE

Amitripline is a good drug for pain relief, you could also try gabapentin and other anti inflammatory drugs. It's sad that you've got these nasty things so young in life and my heart goes out to you.

You have to accept life long use of pain relief is at your door!! Stress will aggregate your condition and you could ask your GP for a ref feral to a pain management clinic .

Your not alone KatieE there are unfortunately many of us out here and as a communitie we can all help each other when we want to scream and shout about things that most people do not understand. Take care and remember you are not alone

John

KatieERoberts profile image
KatieERoberts in reply to

Thank you, i feel alone at the moment as i don't personally know anyone with this condition and my family esepically my boyfriend doesnt understand my pain at all. I don't know what i can do to make him understand but it causes alot of agro with us when i don't feel well to go out or do anything he gets frustrated.

The information and help ive had so far on here has been amazing and i cant thank everyone enough

Katie x

in reply to KatieERoberts

Hi Katie

Your boyfriend and family cannot understand your pain because they have never experienced that sort of pain but it might help if you show them this web site and let them read what others say about the matter.

Hello everyone, imagine hitting your thumb with a hammer most of us do that at least once in our lives, now hit it again, and again and again and again, I hope you never have to experience what chronic pain sufferers have to live with because it is horrendous and we are so alone with our pain, so try to be there for her when she has a bad day.

John

KatieERoberts profile image
KatieERoberts in reply to

Yes i think i will show my boyfriend later and let him read about other people who suffer too, i think somestimes he thinks i overreact but my mom says im pretty good at hiding my pain and i have a high pain threshold as it is

Thank you

Hi Katie I have fibro among other ailments/illnesses, and amitryptylene is a major help to me when things are at there worst for blocking the pain line to my brain, the side affect is that it can make you put on weight long term.

This is why now I only take it when I am at my worst, because I'm currently trying to lose weight, which is a slow progression but it is still working out for me.

Only by trying out different medications will you be able to find out which works best for you and your particular needs as everyone is different, only use advice sparingly as "findings-ideas" from this site other sufferers will be able to discuss their findings with you, but will not replace your doctor or any other medical professional that you need.

I wish you all the help you deserve, take care gentle hugs 👍😊

KatieERoberts profile image
KatieERoberts

That's a worry to me as i am quite obsessed with looking after myself and going to the gym but that's hard at the moment due to pain. I will see what my doctor and consultant and see what they sat but my consultant said its the only option for the pain i'm in.

Thank you x

johnsmith profile image
johnsmith

"fibromyalgia" this is a diagnosis after a set of symptoms are seen. You have a choice go for the medic's pain killers or do some investigatory research. Symptoms can have many causes. Unfortunately you get the treatment for the easiest option which can be helpful, but most often is not.

When I broke my wrist a few years ago I got the symptoms of "fibromyalgia" in my hand and wrist. It took a number of months of physical exercise work to get my hand and wrist relatively pain free. My McTimony chiropractor demonstrated to me that small muscles surrounding the tendon sheaths were also over contracted. By dealing with the muscles contracted on the tendon sheaths and releasing them I got the strength back in my fingers.

I believe that "fibromyalgia" can be a condition of over contracted muscle which needs to be uncontracted. This is not a neurological condition. This is a condition that yoga recognised thousands of years ago. Yoga is about lengthening out muscle.

Muscles have nerve inputs for contraction. The brain controls how much contraction can occur. Sometimes muscles can get over contracted. Think in terms of cramp. Muscles have no means to uncontract. The brain just stops sending a signal to order a muscle to contract. The lengthening out of a muscle is done by muscles elsewhere in the body contracting and pulling on the contracted muscle. No amount of medical pills can enable an uncontracted muscle to lengthen out again. The lengthening out of a contracted muscle requires the service of other muscles. Massage therapists have techniques for lengthening muscle. Lengthening out an over contracted muscle can take weeks and can be a painful process.

A number of complementary disciplines deal with over contracted muscle problems. This is something you need to network in your local area in order to find who are good with their hands and can be helpful.

Hope this helps.

KatieERoberts profile image
KatieERoberts in reply to johnsmith

I see where your coming from but my pain is throughout my body, and my muscles are constantly moving i don't ever sit down and haven't done all my life, i'm an avid horse rider/competitor and that includes all the day to day chores that goes along with horses too. I go to the gym/running every night followed by 2 yoga classes a week, so i am far from lazy therefore my muscles must be constantly lengthening and shortening hence why i believe this is an illness, as much as i wish it wasn't or that i didn't have it.

I also have physio/massage every week on my back/ shoulders and legs where she stretches me out on my spine due to having scoliosis when i was younger and massages my whole body to try and relax my muscles.

From what i have read and seen and heard fibro is a illness related to the nervous system (a neurological disorder) how we process pain is different to normal. People on here all have the same symptons the fatigue, constant pain through the body, IBS symptoms and low vitamin D etc therefore although fibro isn't well researched its definitely an illness effecting 1000s of people making their day to day lives hell.

I believe if there was better diagnostic for this illness people would understand it more as it gets so confused with other illness and many people get wrongly diagnosed, like i have done for years.

Thank you for your information

johnsmith profile image
johnsmith in reply to KatieERoberts

Thanks for the reply. My reasoning still holds. If you were in your twenties then my reasoning would probably be a bit off. As you get older the fine tuning of good muscle behaviour begins to be lost. This is why many sports people start to retire from competitive sport in their forties.

There is constantly lengthening and shortening in a well balanced way. And there is over contracting and not enough lengthening when the brain does not get its fine muscle control right.

The issue of fine muscle control is worth investigating. A session with an Alexander Technique teacher may be useful to see if your muscle control and posture is in fine working order or whether something has gone awry.

Hope this helps.

KatieERoberts profile image
KatieERoberts in reply to johnsmith

i am only 20 this is why i believe its a neurological disorder,s surely my muscles wouldnt have acked in at my age.

My muscles have always been in good shape due to my active lifestyle

I will have a look thank you.

johnsmith profile image
johnsmith in reply to KatieERoberts

My understanding is: "Neurological disorders are diseases of the brain, spine and the nerves that connect them."

It is is right that you should consider the possibility that you have a neurological problem. However, there is always the possibility that your training regime is causing the problem you have. If this is the case then it is not a neurological problem it is a problem with lacking the means and skill with fine muscle control.

The brain when it is tired will fail to provide fine muscle control. When this happens muscles will be over contracted or suffer stress damage. It is not about muscles being in good shape it is about the muscle control being conducted in a manner that ensures that the body is in good shape rather than causing deterioration of body tissues.

You can use mental toughness to push through pain and ignore pain. However, pain may be a hint that you are not engaging in fine muscle control. Practice when done correctly improves the fine control of the muscles. This results in the illusion of increased endurance because the fine control of muscles reduces stress damage on the body. Practice when done badly becomes a battle of handling the pain and ignoring the pain. There is a hint of this when you mention "due to having scoliosis when i was younger and massages my whole body to try and relax my muscles."

It is worth while seeing an Alexander Teacher. They will have the added benefit that it will improve your horse riding. I am in territory where there are no words that can describe internal mental experience.

It is very easy to engage in bad muscle control habits. Been there and done it. Bad muscle control habits are automatic and cannot be noticed by yourself.

There is a saying: "It is easier to see the spec of dust in someone else's eye than the plank in your own." This is why we always need someone else to spot our errors.

Human Motor Control 2rd Edition by David A. Rosenbaum ISBN: 978-0-12-374226-1 is book that is worth getting as a good reference book. It will in your understanding of muscle control.

Hope this helps.

KatieERoberts profile image
KatieERoberts in reply to johnsmith

My physio/massager is there to relax my muscles but also remove scar tissue that builds up around the metalwork in my spine, this will happen for the rest of my life, consultants told me physio would be a thing for the rest of my life as my body cannot reduce the scar tissue around the small screws etc by itself and needs help.

i no longer horse ride and haven't for a few weeks due to the pain i was in when doing so.

Thank you

johnsmith profile image
johnsmith in reply to KatieERoberts

I cannot comment on this as it is outside my field of knowledge. I am suspicious of the explanation. If your posture is re-enforcing poor muscle control then massaging may be of some help but is not the full picture.

You need to learn how not to put the wrong sort of stresses on the small screws etc. Physio in the UK often are not skilled with their hands compared to the discipline of a skilled Alexander Teacher.

Speak to people who have tried Alexander Technique lessons. You need to try and investigate various complementary medicine disciplines to fins a therapist who help reduce your reliance on therapists and enable you to have the skills to manage your muscle difficulties.

Google "myofascial muscle trains".

Coastwalker profile image
Coastwalker

You can get Fibromyalgia pains with either B12 deficiency or Low Thyroid (Hypothyroidism)

Some fibromyalgia cannot be cured, but best to rule out B12 Deficiency or Hypothyroidism first.

Fibromyalgia is listed in the symptoms of both vitamin B12 Deficiency and Hypothyroidism, but Doctors are not good at recognizing it. Over in america and Europe they have wider blood 'range's so don't 'miss' so many patients.

My Fibro pains only went once I was on optimum Thyroid medication, I had to keep asking my Doctor to 'up' my medication and look at my symptoms not go by my bloods, I would not be well now if I relied solely on my Doctor.

Doctors in Uk are missing too many B12 Deficiency and Hypo patients you only have to read their stories on both Thyroid Uk and the PAS communities here on Health Unlocked. Also our vitamin D levels, iron, ferritin, and folate too as they too might be low, they go hand in hand too, but often get over looked.

Ask for a printout of any bloods and their ranges you have had recently had done (or ask for new bloods to be done) and pop them up on both Thyroid Uk and PAS Pernicious Anemia Society, here on Health Unlocked.

I belong to many of these communities to help my family members. Doctors have 'missed' many in my family too, they would still be ill if it wasn't for members of the HU communities. We have to work it out ourselves and cross question everything we get told by medics, especially prescription pills. If you do have Low thyroid or B12 Deficiency do not take anti depressant pills, you will fall further, too many side effects and most do not work. (T3 is a thyroid medication also now being used as an antidepressant oddly enough)

Years ago before thyroid bloods were introduced, if you presented with either high cholesterol or fibro pains to your Doctor they would prescribe you NDT Natural Dessicated Pigs Thyroid (which I now buy myself and self medicate,) you would take as much as you needed, till back to normal again, (and your cholesterol went back down to normal too,) but that no longer happens. Doctors now rely on the unrealiable blood tests which can over look a thyroid or B12 Deficiency problem.

Not only do they miss these patients, if these patients are really lucky and get a diagnosis, the Doctors then are not good at prescribing the correct doses so the patient continue in pain, no doubt getting worse. Many with fibro years later find they either have low thyroid (hypothyroidism) or B12 Deficiency or even both.

Have you also heard about

Hypothyroidmom.com

stopthethyroidmadness.com

KatieERoberts profile image
KatieERoberts in reply to Coastwalker

Thank you for your information, i had new bloods sent off last week and she is testing for my throid issues and i believe b12 too and lupus. (i have a picture of my blood form i always like to see what shes checking)

I will look more into the thyroid i dont know much about it or what it can lead to cause, i alwsy thought if you had throid issues your either overweight with an underactive thyroid or underweight with an overactive thyroid and thats all i know.

I will look at those website now, thank you again x

Coastwalker profile image
Coastwalker

Remember to ask either the Doctor or receptionist for a printout of your bloods and their ranges and pop them up on 'Thyroid UK' forum on here Health Unlocked, where others do this daily so members can help them forward,

(Not saying you actually have low thyroid or b12 Deficiency, but at least just to rule them out.)

Be aware if you have all your presenting fibro symptoms and your Doctor still says your thyroid results are 'NORMAL' so many get fobbed off and told nothing is wrong with them, yet they are hurting all over. Many get given pain killers, (with side effects, ) and told it is all in their head then prescribed depression pills, when it could well be down to just hormonal imbalance.

Remembering that fibromyalgia is a 'listed' symptom in both B12 Deficiency and Low Thyroid (Hypothyroidism)

it all looked complicated to me at the time and took a while to sink into my brain, but we learn to read the necessary bloods and get to know how to put things right where medics fail us, we then in turn help others in the same position. I am no expert, just someone who has learnt the truth about what is really going on. (You'd be surprised.)

Do keep all blood result printouts, Thyroid Uk members usually ask for their printouts now, Doctors are getting use to us asking, though members still come across stubbornness at some surgery's. You might already know that patients have written rules/rights to our own blood results and health records. I 'kept' all of my printout of bloods and it has helped me learn where my body feel best at.

Just like to add that once I was 'optimally' medicated, my fibro pains fell away almost overnight.

KatieERoberts profile image
KatieERoberts in reply to Coastwalker

In a way i hope that something else is wrong so it can be treated in another way and i wont be on painkilers and antidepressatns all my life. But honestly the pain im in at the moment is so severe i just need it to go away before i can even concentrate another research its so tiring having to try and diagnose yourself because nobody else has a clue.

Thank you for your information x

Coastwalker profile image
Coastwalker in reply to KatieERoberts

I do hope something is found soon too Katie.

I have just read about your scoliosis surgery, spine problems can be caused by B12 Deficiency, even right down to your feet, yet often gets over looked, an American Doctor almost died from B12 Deficiency by not being diagnosed, might be an idea to google it, to rule it out.

B12 Deficiency can cause fibromyalgia, weight loss, poor concentration, depression etc., as I mentioned before Doctors are not good at spotting B12Def. or even Pernicious anemia.

Do remember to ask for a printout of your bloods and their ranges and pop them up on both Thyroid Uk and also PAS (Pernicious Anemia Society,) Katie

KatieERoberts profile image
KatieERoberts in reply to Coastwalker

I have always thought my scoliosis and the way i feel now are linked. i have extremely low vitamin D levels and have for years and wondering if that effected the way my spine grew causing it to be misshaped.

I will have a look at both and see what they say, Thank you

Coastwalker profile image
Coastwalker in reply to KatieERoberts

Sorry to be a pain again. :)

Was watching a you tube video this morning, Dr. John Bergman (excellent at explaining the truth about medical stuff, the medical world does not want you to find out about,) he was going on about the Zika virus (panic,) NOT being the cause of small headed babies in Brazil, of which many have been suspicious for a while. At the end of his video he announced that his next video (I believe to be free subscription) was about curing scoliosis. Couldn't believe it.

I have been out, now back, but cannot find my original zika video of Dr B. there are several videos, but cannot find the exact one.

:( I will try though katie.

KatieERoberts profile image
KatieERoberts in reply to Coastwalker

I bet that would be interesting, brilliant thank you. I will keep an eye out! xx

AnyaK profile image
AnyaK

I am so sorry to read your post. You're going through a difficult journey. I was diagnosed with Fibromyalgia when I was 21. I've rebuilt my life since (now 40) but it took my life. Personally, I came off the amytriptiline because it made the fogginess in my mind worse. You don't have to take anything you don't want to and you are right to be concerned and check everything - if I'd taken everything I'd been offered I'd be far sicker now than I am. Try it, see how it goes it won't kill you but don't be afraid to say this isn't working for me. It's hard because of the fog but the best chance you have is to educate yourself. Different things work for everyone with the condition. Personally, I've found cutting out dairy, meat, gluten etc and making sure I eat things like blueberries, saurkraut etc every day has improved my life considerably but it took me a long time to get to that stage.

KatieERoberts profile image
KatieERoberts in reply to AnyaK

Thank you, i'm glad you were diagnosed the same age as me and you have managed to have a relatively normal life, that gives me hope that i will too.

I am willing to try amytriptiline because i've been told its the best pain relief but as you said it works differently for everyone, it may not work with me and i will have to find another painkiller.

People have also said finding your own way to cope is the best medicine which i think is the route i want to go down, i don't want to be on painkillers all my life but at the moment i cannot cope with another day of pain and fatigue and everything else that comes with it.

Thank you for your information x

AnyaK profile image
AnyaK in reply to KatieERoberts

One thing I will say is that you will cope even when you're sobbing and you don't want to. You can cope. For me losing my ability to think and process information wasn't worth it with the amytriptiline - I couldn't even read a book. There is the potential of a life with the Fibromyalgia but although I now have three children I wouldn't call it a normal life. For some people it reduces and goes away. Mine has never entirely gone but I've learned to manage it so it's more stable and predictable. YouTube has some great guided meditations - find a voice you like. When it's hurting like mad my advice is eat loads of ginger (it's great for the pain), have a hot bath and breathe to relax. (Basically the same advice as getting through having a baby because it really can hurt that bad)

KatieERoberts profile image
KatieERoberts in reply to AnyaK

Ive been very emotional recently, ive had break downs at work and at home and i can feel like my life its being taken over by an illness. Ive got an extreme high pain threshold i went through scoliosis surgery at the age of 12 and was stuck in hospital for months in and out of surgery with 10s of needles in and out of me daily. But i would go back and live through those days by the click of a finger if it took the pain away i feel now. Its not just the physical pain its the depressed, ive never felt so low.

My nan swears by ginger so i might give it a try. Ive never been a bath person but i think its worth a try also.

And yes it definitely can hurt that bad, ive never had children but i can imagine much more to be more painful than day to day life with fibro. The worst part for me is nobody understand the pain, its not physical there's no swelling or redness all i get is 'you look fine' it drives me mad.

thank you x

AnyaK profile image
AnyaK in reply to KatieERoberts

You're possibly not depressed. You're exhausted, your head is foggy and you're in agony. Of course you're miserable and of course you're not functioning. But I'm not given to depression - I get down but I can point directly to the reason I'm down. I started doing all the things my gran used to do. Scalding hot baths, eating ginger (we can get capsules now and their quite cheap), dousing myself in deep heat. Type "The Spoon Theory" into Google. It's a good way of explaining the fatigue angle to people and a good site to send them to. I wrote something about the bit after my diagnosis (I went through a particularly bad period), it's not cheerful and the ending has a trigger warning. I don't know if I can post the link. If you type Anya Kimlin Wynter, Fibromyalgia Story into Google it should come up, but only read it if it won't make things worse. My character took the option I considered but didn't.

KatieERoberts profile image
KatieERoberts in reply to AnyaK

I just feel very low and very exhausted your right. I've read about the spoon theory and it makes 100% sense that's what I've shown my mom and it upset her a lot. I'm definitely going to try some ginger cubes and have those as my nan swore on them.

I will look at that now. Thank you x

AnyaK profile image
AnyaK in reply to KatieERoberts

The fact you're working and coping to some degree is a miracle and something to be hugely proud of. Good Luck with everything.

KatieERoberts profile image
KatieERoberts in reply to AnyaK

Just about but i refuse to let it beat me, thank you x

SandraJS profile image
SandraJS

I too, have fibromyalgia and on amitriptyline. It will take a while to get it under control. Take things easy, don't beat yourself up about taking the meds as it will help you to cope and get on with living. Without a bandage or physical evidence, some people can be insensitive because of their lack of understanding. they ain't worth being in your brain space if they don't want to understand. Be mindful of what you eat, as some things such as sugar substitutes , or certain coffees, can trigger flare up. Pace yourself on good days, don't over do things just because you're feeling good, as you will pay for it for many days after. Check out support groups, and make fibromyalgia friends. It isn't easy, but you will get there. Best wishes.

KymLadybear profile image
KymLadybear

Hi I have been on low dose Ami for 25 years. As a muscle relaxant to aid sleep at night and cut across the pain. I have recently come off this. I have Fibro and havd to say that Ami does not help the pain at all. It may relax the muscles to ensure you get off to sleep but I would still awake after a few hours because of the muscle pain and having to turn over etc.

So I would say it's worth trying for a short period to enable you to clutch up on your sleep cycle a bit but, no, it does not help the pain.... Can make you feel somewhat dopey and the body stores fat easily.

I think gentle exercise like u ga or pilates, walking, swimming and stretching are better methods of help. I believe there is as yet no real way to treat fibro and painkillers, although supplying a certain peace of mind that we are being understood and 'treated' actually do little good and have horrible side effects.

Until a cure is found us fibro people are warriors of survival. The brain will adjust to and accept pain and horribly, this is what we have to do on a daily basis.

Emotional support from others, research from forums and how everyday people handle the condition and home remedy aids are sadly all the ammunition we have to manage this horrible condition. 🌹

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