Fybramalgia I'm told I have, please r... - Fibromyalgia Acti...

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Fybramalgia I'm told I have, please read and offer any advice, thanks in advance

Harry-Hill
Harry-Hill

Hello all,

First post, sorry it's a bit long.

I have been struggling physically for the last 6 months, after falling off a ladder only 2 MTRS and fell on my feet.

Since that point though I have deteriorated from an healthy active person to someone I don't recognise, no offence but I'm only in the middle of my life with young kids and I'm like a 90 year old cripple, walking aids, toilet aids, bath seat, grab handles, long shoe horns, support socks, shoes 2 sizes bigger, extra large size 11-14 diabetic socks (I'm not diabetic, but my legs n feet swell a lot and water tablets didn't work) ..... The list goes on.

I can't walk unaided now, walking stick, mobility scooter and wheelchair are the order of the day.

Getting in the bath is a no go too painful, so sidle in on the bath board for some sort of shower.

I have had loads of tests, bloods, x-rays, cardiologist, scans etc.

The latest from a private rheumatologist says I have Fibromyalgia!

He says pain killers won't touch it and I agree with that, but then the treatment is left with my GP to manage and suggests I look into psychotherapy! He suggested something called Amitriptyline to help me sleep as I only average about 15 minutes deep sleep each night.

Oh, also exercise is very good, lose some weight and release the good chemicals in the brain.

But the pain I said?

Rheumatologist replied,

Don't worry about it, nothing wrong with your joints, it's Fybramalgia just work through the pain!!!

Anyone else had anything similar to this with a similar outcome?

Thanks in advance

37 Replies
oldestnewest

Really really similar story Harry-Hill. I hate to say it but you are going to have to learn to rethink the pain (that’s why some mental work can be helpful). The penny drops when you start to believe the pain doesn’t actually equate to injury. The tricyclics drug you mentioned didn’t really work for me but melatonin 5mg really has helped with sleep. And better sleep means better pain management. It is about management, a multimodal approach: exercise, mental work, various therapies. In all my research since 2014, i don’t think I have found more than 1 or 2 ‘reputable’ instances where people say they get cured....BUT, it can and does get better.

Harry-Hill
Harry-Hill in reply to Sosbach

Hi Sosbach,

To thank you for your reply.

I will take the advice as you have said, I have a psychotherapist booked.

Onwards and upwards.

Thanks again

Stay safe and healthy.

Sosbach
Sosbach in reply to Harry-Hill

All the best. CBT (cognitive behavioural therapy) has a lot going for it.

I also have fibromyalgia and I went through similar situation. I fell and damaged my back, then I was bed ridden for two months, but the pain continued for a long time. this is when I was diagnosed. In my case, what helped with the pain is the following:

- duloxetine (antidepressant specific for chronic pain) I don't take it anymore. just in the beginning!

- heated and comfortable bed

- healthy sleeping and eating habits

- no stressful activities

- therapy (since I also had depression, but it's intertwined with fibromyalgia in many cases)

And every time the pain comes back, this is how I immediately get rid of it: Swimming.

Swimming is the absolute best for my fibromyalgia.

Today I live with absolute no pain : )

Celesteclaire

Thank you for replying.

Fantastic to hear that you are now in no pain.

Hope it continues to be so.

All the best.

Hi Harry, i too live with Fibromyalgia, amongst other things. The pain is terrible and yes it completely changes your life as you once knew it. It took me a year to find the right combination of drugs to help. I didnt and couldnt sleep either. I used to make myself a sort of cocoon, spare quilt and 8 pillows, prop them up on the bed and make a little soft nest in order to be able to get some sort of sleep. Amitriptilene didnt work for me, but i know of people that it does work for. I found relief with Gabapentin and Tramadol, the combination took the edge off the pain. I had physiotherapy too, and during one of these sessions, the physio mentioned that he also did acupuncture and he offered to give me a session to see if it would help. In the end i had 4 weeks worth, and it worked wonders on my upper body pain. I dont suffer with any upper body pain these days. However, it didnt touch my lower body pain, and this is where i have the most awful pains. I think its just a case of trying lots of different things to help with the pain, moving more does help, it stops you stiffening up. I also find that over the counter Freeze Gel works wonders too. Especially when the pain has woken me up, i slap lots of this gel on, and it enables me to get back to sleep. Dont dismiss anything, give anything and everything a try. What works for one doesnt always work for another. Trial and error. Try to stay upbeat and take care of yourself.

Hi geminilady

Thanks for your reply.

I am willing to give anything a try, as you have done.

Welcome to the club nobody wants to join! Fibro is a beast which gnaws all the time, and realistically, we can get past that pain barrier. You just have to be bloody minded about it.

I've been diagnosed for about 12 years, and depending on the pain levels each day, I use sticks, a rollator, or occasionally a wheelchair, but mainly that lurks in the garage, sulking.

As Sosbach says, when you realise the pain does not equate to any injury, then you can start to overcome it. Nowadays, I am medication free, although I keep some Ibuprofen around for headaches and the like; Also I have a badly damaged knee, and when that is really kicking my backside, I have a few CoDydramol, (although They have gone out of date).

For me, nowadays it is the stiffness and the lack of grip which is the worst part. That, and failing sight, have stopped me driving, and with advancing age, Arthritis is beginning to set in in my hands, and for a crafter, that is demoralising.

Its a heck of a journey, but you can get there.

Cheers, Midori

I was given amitryptilline to help me sleep but it made me a bit zombie-like. Since retiring FM is not so much a problem. I have OA instead and three slipped discs in just over a year! Getting out of bed is horrendous, as it is for many FM sufferers. Amitryptalline is an antidepressant that can benefit FM sufferers. I don't think it helped with brain fog.

I was sorry to read you are having a bad time, I too have fibromyalgia and was diagnosed quite a few years ago, I was a sports person and enjoyed running and swimming everyday. I found it really difficult to accept this diagnosis and still do some days. But as the others say you really have to try everything as we are all different therefore some things work for some and not others. I tried various pain relief/anti depression meds but they just put me into a fog. I still exercise as often as is possible but gently and eat as healthy as I can with the odd treat. I really hope you find the right treatments for you. Listen to all the people on here as there is some fantastic suggestions and support. take care and stay in touch. gentle hugs. D Xxxx

Harry-Hill
Harry-Hill in reply to Tikaneko

Hi Tikaneko,

Thanks for your reply and thoughts on my recent diagnosis.

As you say, we are all different, so I will be trying different things to see what helps or not.

You mentioned eating healthy with odd treat, I was thinking if it would be a good idea to do a food diary, to see if there are any 'triggers' that could make it worse.

TIA

Tikaneko
Tikaneko in reply to Harry-Hill

Yes absolutely, anything that helps you to cope, I found that following an anti inflammatory diet really helped me. Vegetables, fish, poultry, beans, nuts, fruits, seeds, healthy fats, and whole grains are major elements. The Mediterranean diet is a well-known anti-inflammatory diet and includes many of these foods.

Food and Fibromyalgia: What to Know - Arthritis-healthwww

I also agree with redmaple-5, pace yourself, there is always a payback if you over do things. you will find what suits you best. I also have “flares” which happens for no reason at all. If I don’t exercise I become stiff and painful and if I over do it the same happens, getting that balance isn’t always easy. However you will get there. Take care and keep in touch D x

My advice is don’t work through the pain. Pace through the pain. You have to be strict and know your limits, as if you do too much you will suffer a payback of more pain and zero energy. Acceptance is the key, learn to say NO.

Redmaple-5

So true, pushed myself today.

Too much too soon.

Not good

Little steps needed.

The NHS website provides a pretty good summary of treatment options and drugs nhs.uk/conditions/fibromyal...

Amitryptyline is an old drug and it will cause drowsiness. Alternatives include Duloxetine, which is licensed for fibromyalgia.

Gabapentin and Pregabalin are used in the treatment of fibromyalgia to varying effect. It is very much a case of trying things, and if they don't work for you, switching to something else. What works for me, may not work for you and vice versa. Pain management programmes run by Hospitals, usually for a week to 10 days, but sometimes run as one day a week for say 10 weeks, may help you. Your GP would need to refer you.

If there is a Fibromyalgia Support Group that covers your area, meeting other people with experience of the services and facilities available, may be of benefit to you. Contact FMA UK for details.

Hi releasethemagic,

Thanks for that, so true what works for one may not work for another.

I will look into support groups for my area.

Thanks again.

Hi There, I am sorry to hear you are having such a dreadful time! Most of us Fibromyalgia Warriors suffer from other conditions also with constant chronic pain, and as well as the flare-ups it can be horrendous at times getting through the day.

I have knee neck and back damage/ wear and tear, and my walking is affected now but I am nothing as bad as yourself and it must be so so hard for you to cope especially when you are still fairly young. Most fibromyalgia/chronic pain sufferers at times I feel have to suss out and try just about everything and anything to get relief themselves sadly. I for one can't exercise, I am not overweight but still strive to do my daily chores and things and can end up in bed often when the pains become overbearing. I attend the" Pain Clinic" but to be honest I thought this would be the answer to my prayers! My Consultant doesn't like his patients taking lots of meds due to side effects, nor do I after having jaundice and high liver function levels which hospital thought could have been my years on" Cocodamols". They really weren't strong enough anyway to help my pain. I am wary now about meds due to this. The advice really from the pain clinic is Pace Pace and Pace yourself!!! Very easy to say when you have been such an active person.

I was on" Amitriptyline" when I was first diagnosed. I was a lot better then in the early stages of fibro but kept taking electric shock pains everywhere and they did help. They are normally the first drug they try with fibro so it is worthwhile trying them. We are all so different what suits one doesn't suit another. I had no side effects back then in 2010. As the fibro got worse they stopped working and I decided just to keep on with the Cocodamols at the time as my life was busy looking after my parents and sister then my husband. Things got so bad hospital stopped cocodamols due to the jaundice episode and put me onto "Tramadol" and my GP had started me on" Pregabalin." After 2 days on the Pregabalin I just could not believe the relief I had and couldn't believe what I had been suffering for so long. They do make you sleep.

After my husband passed my fibro escalated, and the Dr increased the strength, it was then I started swelling in my hands and feet and generally felt not good with them. I have friends on them who think they really help. I originally stopped them right away and ended up ill after a week rolling about with awful stomach pain and sickness and had to be seen at out of hours. Dr told me it was going "cold turkey" that had caused all of this. I never gave this a thought, so had to go back onto a lower dose and wean off for several weeks afterwards.

I use" CBD oil" which you may want to try, and though I haven't had "Acupuncture" for many years it was a good help at the time. My pain clinic consultant was delighted I gave up the pregabalin but was put back onto amitriptyline by my GP for the fibro. They had helped so much in the beginning but they in fact then started having the opposite effect by keeping me off my sleep and I was up at the loo the whole night. It was amazing how after a few years your system must change. I gave them up as was awake all night and zombie- like the next day.

I only take tTramadol now which help and when pains are extremely bad I take two paracetamols along with two tramadols which help boost effects of the tramadol. Apart from that and the CBD oil I use a "Tens Machine" which you may find helpful. A lot of people find "Massage" helpful too which I haven't tried though I have an electric small back massager. Like so many of our Fibro- family my cupboard too is like a chemist shop with lotions and potions, we will try anything to get some relief. During the bad flare-up spells I use" Cold packs" on my knees and" Hot bottles" on my back the hot water bottles are a boon for me during the days in bed with Flares. Your Dr really should be referring you to the" Pain Clinic" with the so many painful/mobility issues you are having. I struggled also get into the bath as couldn't step over with my knee problems and eventually got some help to have a wet room installed.

I do so hope you are getting as many aids and things to make life as easy for you as possible? There are lots of books and things on Fibromyalgia and there is a monthly Fibro Uk magazine and our Fibro Family on our Forum are great for advice. When I am at the end of my tether in pain I often message them as they know and realise what you are going through and sometimes just being in touch with them can be such a comfort!!! I am trying "Cannacres CBD patches" at the moment as advertised I believe in he Fibro magazine. Please see a Pain Consultant and make sure he/she is aware of everything you are going through. My Physio said he could do nothing for me other than Pain Relief, no knee op, or anything to help with my neck or back, and with the fibro affecting the muscles and things it plays it's part too he said. I have to be so thankful though as I know I could be so much worse! I do so hope you get some help to make life a bit better and more comfortable for you, and I hope you pursue all avenues that are out there. Take care God Bless x

P,S. Sorry Harry I forgot to say" I don't agree with your Rheumatologist" that pain killers don't touch Fibromyalgia pain, it is nerve pain. The Tramadol most certainly give me some relief and help me get through the day. I try only to take them when I need them, obviously when the pain gets so bad I would take more at that time. Amitryptiline, Pregabalin, Gabapentin and some others that I am not familiar with seem to be helping people keep there pain under control. My Pain Consultant when I first suggested CBD oil and showed him the advertisement for "Love CBD" in the Fibro Magazine said it was basically no good and suggested I don't buy it and it wasn't helping his patients who had bought some. At that time I would have taken/tried anything for relief and bought some and made sure I was taking it regularly back then and it did help. |At my last visit he asked me if I was still taking it and told me he hopes to be able to prescribe it at some point for his patients!!!

I took amitriptyline which helped a bit but contributed to my hair loss which is a side effect, I try to avoid pharmaceuticals tbh. I think we need to use the power of Mother Nature and natural herbs and plants, diet. Thing from the earth which we are a part of. I’ve recently been taking Ayurvedic herbs Ashwagandha and Brahmi to help calm the central nervous system which is ultimately where the imbalance stems from which causes the pain and sleep issues/fatigue. Also Magnesium oil spray transdermal as it absorbs better through the skin plus a Magnesium citrate supplement, super important for the nervous system and pain management. Also vitamin B12 should be at least 500 ng/l, another important nutrient for the nervous system. Some drs don’t think of these things. Vitamin D is another one essential for your muscles and bones. My magnesium, B12 and vitamin D levels were all just below normal range so I’m now working on getting these levels up. Also D-Ribose to feed energy to your muscles to stop them from over working which is a common issue in FM sufferers.

When I’m really bad I do succumb to diazepam which utterly knocks me out and kills pain completely but I try to limit this to only when it’s unbearable.

Guaifenesin is something I will start tmw just received them, a lot of good reviews about this:

drugs.com/comments/guaifene...

Order from: (Contact OP for link)

Hope this helps

Love and light x

desquinn
desquinnAdministrator in reply to jadele28

the only clinical trial into Guaifenesin found that it did not help.

jadele28
jadele28 in reply to desquinn

I know but there is enough anecdotal evidence to warrant trying it and as there are no reported side effects like most anti-depressants and pharmaceuticals that doctors prescribe for Fibro it seems to be a worthy option. I’ve taken it for two days now and I’ve slept very well and had no pain! Let’s hope it’s working. I’m just trying to help. I think this does work for some people

I have fibromyalgia 16yrs.got osteoarthritis in hands knees hips..bone specialist told me fibromyalgia magnifying pain so making it chronic.saw pain specialist.he say painkillers don't work and long term affect other body organs.. amytrypline is helping me sleep bit better on 30mg anight but I think I need more..my docs don't know how to help that's why sent pain clinic.waiting to see rheumatologist..pain specialist said he won't be interested in you as you not got rheumatoid arthritis..he said try CBD oil from Holland and Barrett....maybe a neurologist might help as it's all fibres going to bones and joints that are inflamed with fibro...I just don't know what to do some days except go to bed..I used to swim as good exercise but with covid haven't been able to..I hope you get some help..life can be cr*p as I have gone downhill last year.tm joint in face agony and left leg plantar fascia...to add to the list...

Rabs550
Rabs550 in reply to Smoggie1

Hi there can you please tell me wat you what are you diagnosed with cronic pain wat type

Smoggie1
Smoggie1 in reply to Rabs550

I got out of a swimming bpool 16yrscago with flu symptoms and chronic pain in elbow...took nearly 2yrs to get to see rheumatologist he said you got fibromyalgia go see your doc...changed docs as he was useless.in meantime I was commuting acid.so had hiatus hernia..leg gave way and fell down stairs thought I had sacrieliatus.......to date I have fibromyalgia...M.E. hiatus hernia.damaged TM joint. Plantar fascia in left foot.arthritis in knees . elbows . Hands and hip....baker's cyst behind knee.i

think the fluid leaking through to back of knee has triggered chronic flare up so my brain has been triggered in defence it has sent fluid all down leg and bulging swollen veins..my legs look terrible and I can hardly get up and down stairs or walk...docs don't know what to do for me and as I said first time pain clinic he says I have to come off tablets as will damage other parts of my body..I now am trying CBD oil from Holland and Barrett..but not working so far..pain in knees and legs worse..they want me to attend seminars at pain clinic to talk about things..but that will just stress me out more..plus hospital 20 miles..so if husband away I got no one to help me..swimming used to help me swich off and relax...but with covid I just carnt relax so date not go..I have deep pain with all fibres that go to joints and bone are inflamed..that's all I can tell you..I hope you find something that helps you..I'm on amytrypline 30ml a night and it helping a bit..and an antidepressant..cut off other tablets but suffering for it..heat really doesn't help.

Rabs550
Rabs550 in reply to Smoggie1

Is that the only tablets you taking how are you coping?? Must be hard without ur husband especially if his happfull for me it's the other way round I have 3 teenagers and single parent nothing at all is helping me every night everyday I just keep searching sumth new

Smoggie1
Smoggie1 in reply to Rabs550

Yes pain specialist said co dydramol...pre gabapentine all stuff like that don't help with our sort of pain only cause damage to other parts of body..my doc even told me he don't know how to help me gave me codydramol for pain and ectorcoxib for inflammation...and now pain specialist say this I'm well and truly buggered cos doc won't want to give me anything.. heat makes symptoms worse so I'm not really doing that much...I'm sorry for your pain.i was a single mum for20yrs and only remarried 8 but been with him 16yrs... I started with chronic illness when youngest son at university..but I think the stress over the years with ex-husband and problems that all caused...then being clumsy and stupid injuries and deaths in family have not helped..so I hope your kids understand as it is hard when they don't..this is the worst I've ever been and with it being my legs steps me doing so much..and for some reason I just cannot control the pain which is causing problems with my blood pressure...in hospital they put me on fluids and painkillers in drip cos my blood pressure 166 over 109...I was shocked but nurse said it was the pain causing it..my blood pressure has always been pretty good so this was a great shock as that can lead to serouse problems..I worry cos my sister had health issues and polymyralgia and had heart attack and passed away at 63 4 years ago and that really affected me.my other sister also has similar conditions so we think it might be genetic...god knows sometimes you clutch at straws.when I went to see doc last year as health got worse it was nurse practitioner and she said how have you been copying we haven't really seen you for 6 yes have you just given up...I explained that I have just been trying to self medicate as with shortage of docs and appointments..no one seemed to care...I would just go to bed..husband works away so I would try to do about each day...but befor all this I was fit and swam and did most jobs in the house.. wallpaper paint.drill ect...now I carnt even get on a chair...I hope you have more luck with your health care...covid doesn't help and I'm terrified of getting that ontop of all of this..how many years have you suffered with fibromyalgia... Does anything help you

Hi, I was prescribed Amitriptyline a year ago to help me sleep when I was waking up whenever I rolled over from the pain in my ribs. I took it for a week but didn't think it was doing anything, so stopped.

Recently my carpal tunnel syndrome has returned and I've been prescribed Amitriptyline again for this. It's helping my fibromyalgia this time too, I'm in less pain all over and I'm sleeping deeper. I do have to take it by 7/8pm or I struggle to get up in the morning. It's even helping with my over active bladder! I think I'm going to stay on it for a while, it's only 10mg (the GP said I can take 20mg if I need to).

desquinn
desquinnAdministrator in reply to Camille1

hi Camille1 did your GP mention (the first time) that amitriptyline takes time to build up and be effective? 3-4 weeks was the time quoted to me and then there is the case of getting the correct dose for the individual. Seems like this is what you are doing at the moment.

Doses up to 50mg tend to be for pain/sleep etc but beyond this the does helps as an antidepressant. For some the correct dose will be higher than 50. Glad you are finding some benefit from it now.

Omg 😭😭

I love to hear from you and I have a little advice but forget all that most of all I can feel your pain that's why I asked a gentleman earlier how bad is it and the same here no one will understand you only people who I like you my life also has turned upside down don't ask sleepless nignt crying all night in servere pain everyday calls to doctors if you can't take the pain just call it gp don't wait around I can feel it pain

And you agreed with him??? Here you are struggling with pain and doing allsorts you can hardly walk like me I'm in the same boat as you I dnt understand why you don't want the help of medication

Sorry just re read your notes.try the amytrypline I'm on 30mls and I get couple of good hours sleep..where as up all time before to toilet...have you heard of ldn...my sister on it but had to get prescription from private specialist as local docs either don't know about it or don't want you to have it..the doctor called cris on good morning Britain brought it to light years ago...does away with all painkillers my sister has liquid and she says it helps her..my docs don't wanna know...might be worth you looking into and maybe private rheumatologist could give prescription.

Dizzytwo
DizzytwoModerator in reply to Smoggie1

Hi there, may I ask what is Idn :) I've not heard of that before.

Smoggie1
Smoggie1 in reply to Dizzytwo

Low dose Naltrexone. It's not that easy to get my sister sees private specialist in Leeds..she has to pay for private prescription..she gets it in liquid form.you can look it up just type in ldn

Dizzytwo
DizzytwoModerator in reply to Smoggie1

Oh I understand, you meant LDN not idn thank you for the clarification 😊👍

I could go very deep and give you my advice but most of its been covered.

Just remember when you hit rock bottom theres only one way to go and thats up.be strong minded force yourself on good days to do as much as you can but always pacing yourself.and on your bad days remember the good days and go with tho flow.otherwise you will get frustrated even more.keep strong minded 👍 it doesnt get easier im 43 n im getting worse.what happens is you adapt and learn dealing strategies.and learn to except good n bad days.plenty streaches before exercising crucial with fibro.listen to your body.also i remind myself am not 30 any more ha.as time goes by body deteriorates but still try keep as physically active as you can as fibro loves sedentary lifestyles.good luck chin up

Sosbach
Sosbach in reply to HulkM

Agree, in the end, after you’ve tried every thing else, the right mental attitude is key. The brain is the most powerful tool we have. Change your brain change your pain.

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