No medication helps fibromyalgia - Fibromyalgia Acti...

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No medication helps fibromyalgia

Cumnock profile image
Cumnock
β€’88 Replies

I was diagnosed in 2001 and my specialist was exceptional. He advised me then that nothing would help fibromyalgia and nothing has changed in that way. I fonished work then and find it very hard to deal with. You got to try your best to read a book and have a nice soak in the bath and try to be with people you like a lot πŸ‘ŒπŸ‘ŒπŸ˜ŠπŸ˜ŠπŸ˜Šxx

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Cumnock profile image
Cumnock
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88 Replies
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I agree Cumnock I still work I have a very understanding boss and a desk job but I do have periods of absence but then I try to work from home. I couldn’t agree more read a book, a nice soak and rest and I had a clear out of friends that drained my precious energy and surround myself with the ones who love me, understand me and don’t judge me for doing nothing for a day πŸ₯°πŸ’œπŸΌ

Cumnock profile image
Cumnock in reply to

Thats good. So glad you can still work i bitterly regret leaving a good job but i felt so bad i just couldnt cope anymore. Glad you also sorted the good from the bad with your friends. Hope you can manage having some times out with them πŸ‘ŒπŸ‘ŒπŸ˜ŠπŸ˜Šxx

in reply to Cumnock

Thank you Cumnock I have cut down my working week drastically but I know I won’t be able to do this in the long term I work three days in bed for three at times and yes I hope so too I am lucky they don’t have a problem coming to me even sitting in bed with me πŸ₯°πŸΌπŸ’œ

Cumnock profile image
Cumnock in reply to

Thats lovely. Just keep trying honey xx

in reply to Cumnock

I will thank you 😊πŸ₯°πŸ’œ xx

fybro profile image
fybro in reply to

I had a terrible experience with my work, use to work 4 days together in a shop and found it too much so I went to my boss and told him I had fibro and could he split up my shifts to give me a day in between to rest, I asks my workmates if they would change days they said no, and then I kept being brought to the office and being told that customers were complaining about me, well its a small shop and I knew everyone, so that seemed odd, and when I asked when did this happened. I was on holiday for one of the so called complaints and the other time I didn't even work on that day, they couldn't even get their lies straight, then finally I was called to the office and accused of stealing, giving a bottle of alcohol free to someone I knew, needless to say this was not true, but I think as soon as I mentioned I had fibromyalgia instead of being helpfull he did everything to get rid of me, and being called a thief was the last straw and I walked out, I didn't even go out for months because of the terrible upset, some people are certainly not understanding of the condition, and there were many days after the shift that I would walk home almost crying in pain and what fo.r Best wishes to everyone and gentle hugs x

mybehcetsxx profile image
mybehcetsxx in reply to fybro

I would say that's awful what happened, but I see the blessings this conditions brings. Almost as though it draws out the unwanted pus from an infection and that relief you get when it's gone.

Fibromyalgia helps you identify the people who call themselves friends, family or the 'let me know if need anything' , figure of speech only, people.

I have distanced myself from 'friends' i have grown up with and drawn closer to people who I have known for 5 or 10 years, but the lifers are mere small talk now.

I used to feel really really sad and call them ignorant, but it's not ignorance, they lack no knowledge of my condition. Its nothing more than shallowness, I now feel sorry for them not myself.

I'm wiser and I thank Fibromyalgia for that πŸ™

jannah profile image
jannah in reply to mybehcetsxx

I like to know more about this. I feel drained if I try to do something even cooking, my joints are hurting me. People have called lazy so on so. I've been really emotional on this. So I dont want anyone to bother me so I have close doors on many. I dont want people or family to call me names when they sont understand what I go through. I dont even it myself to be honest. I am so co fuse and forgetful too. My own sister always causing me I'm hypochondriac it's like I'm not allowed to express my feeling or how I feel it's forbidden for me to even say anything.

How I need to go out and about make friends and chill out I'm always moody and this and that all available mention feel the names this horrible names I've been called. Judt to get my head around how does the really affect you this fibromyalgia because I feel there's a lot going on and I haven't really picked point so I can can related to it and see that I can express it to my doctors. That I am not making things up as ivr been called..

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Got to disagree with that specialist. There are a number of drugs that people benefit from but it may be after the 3rd, 4th or 5th attempt. Whether it be pregabalin, duloxetine, or amitriptyline or something else there are people that have benefited but for some they have not found something that has helped.

in reply to desquinn

I couldn't cope with out a med or 2 x

Cumnock profile image
Cumnock in reply to desquinn

Sorry i have had it nearly 20 years now and had osteoarthritis for sometime before that and there is absolutely nothing that touches the pain. It is a fact that all doctors will tell you there is nothing that makes the pain go away. You have got it to come yet cos your fibromyalgia is not at its worst yet. My doctors give me painkillrrs if i want but nothing works. Its in all the medical books that fibromyslgia cant be eased with medication. Best is relaxation if you can

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Cumnock

I am sorry Cumnock but your statements do not track with what all people experience and it is not what all medical professionals say. It is fair to say that when you have a fibromyalgia patient in front of a GP then they options they have are not as easy to prescribe as say tablets for blood pressure.

Search on the meds I mentioned on here and you will find lots of people saying that it did not work for them but you will have people saying that they have got back to or continue to work because of them.

Sometimes a working med for fibro takes a pain score from 8 or 6 down to 4 or 2 and this is not ideal but it makes a difference. Clinical trials support this.

Cumnock profile image
Cumnock in reply to desquinn

I have been with the pain clinic at top hospitals and other specialists and same as with my arthritis they will offer painkillers but advise that they wont work. I will argue with you till the day i die that no painkillers begin to touch the pain and the majority of people who have it are the same. Dont you know that 10 times more people eho have fybromyalgia commit suicide cos nothing touches the pain. You must have a very mild form of it 😭😭

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Cumnock

Well as I speak to medical professionals regularly and speak with the charities medical advisory board I will have to respectfully disagree with you.

little-queenie profile image
little-queenie in reply to Cumnock

ooft

Cumnock profile image
Cumnock in reply to desquinn

As i said my specialist said nothing would work. I have tried lots cos the pain has brought me to my knees and like he ssys nothing works. I wont have stomach ulcers from taking medication. I just have antidepressents to try to cooe x

Flyfishing123 profile image
Flyfishing123 in reply to Cumnock

They have me on gabapentin and 50mg fentanyl. Not one bit of difference has it made.

Micafe profile image
Micafe

That's the problem with fibromyalgia. They don't know what causes it. Doctors used to say that people were making it up. That's what they told my poor mom many years ago.

in reply to Micafe

It's horrible do u to suffer with it x?

Micafe profile image
Micafe in reply to

Yes.

Margiehibbo62 profile image
Margiehibbo62 in reply to Micafe

God love your Mum. My Mum was diagnosed way back in the 70s but then it went by the name Fibrositis. We have a very good GP practice. I have been with them since the day i was born 58 years for me.

I was diagnosed 13/14 years ago now. I take tablets many the same as lots of people on this forum. I can tell you one thing, i still feel pain with my osteoporosis, arthritis and fibro. But if i stop taking certain tablets that pain rises to bloody terrible levels. Its debilitating, so those Drs who say its all in your head or no tablets will take your pain away need to go back to retrain in fibromyalgia!!

Docs told me anxiety at first but I was telling them I only get anxiety because of severe pains every were then I got diagnosed by rheumatologist x

Cumnock profile image
Cumnock in reply to

You got anxiety because of it. Its horrible. Hope you are coping and got soe support xxx

Micafe profile image
Micafe in reply to

Of course!!! Being in pain all the time causes anxiety. Some people don't understand that. Meds for anxiety don't help get rid of the pain!

in reply to Micafe

Exactly bang on x

I have thanks hen it's just horrible to live with u never know wat your going to wake up like that's if I even get sleep xxx

Cumnock profile image
Cumnock in reply to

Its awful not sleeping. Best thing when your mates have a party. The alcohol gets you to sleep.

My specialist told me no meds would work. Sounds like nothing works for yoh too.

Thinking of you.

Ps i was born in Scotland bit dont live there now πŸ‘ŒπŸ‘ŒπŸ˜ŠπŸ˜Š

in reply to Cumnock

I'd love to go Scotland one day and no nothing helps take pain away but does take the edge off for me which I need xxxxxx

What do u find helps u xx

Cumnock profile image
Cumnock in reply to

Nothing only when i go out with friends and have a little alcohol. Tho doc has given me some painkillers which are combined with painkillers and some sleeping tablets. Still complete pain and very difficult to get to sleep.

Like you its really getting me down and i just dont want to be here anymore.

Sorry for whining at you.

Wish you could sleep tonight πŸ˜ŠπŸ˜ŠπŸ’€πŸ’€xx

Cumnock profile image
Cumnock in reply to Cumnock

Sorry meant to say he gave ne painkillers combined with anti deoressants but they dont work. Nothing workd xx

in reply to Cumnock

Depression and anxiety come hand in hand unfortunately with fibromyalgia it does sound as though your low hun there's nothing wrong with a beverage although it is a depressant your not whining your low I hope ur get over this depression sending u a cyber hug xxxx

Cumnock profile image
Cumnock in reply to

Thank you.

I never drink to help with pain. Only if i go out occasionally with friends cos i dont want to be an alcoholic!

Hope you can get to sleep tonight xxπŸ’€πŸ’€πŸ’€πŸ€—πŸ€—

Cumnock profile image
Cumnock in reply to Cumnock

Thank you for the hug sending one back to you too xx

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

While there might be no medications that currently take the pain away completely - both from personal experience and talking to meant others through work/volunteering ... Medication can definitely help take the edge of the pain - often enough just to let you function on a daily basis and live your life to its fullest.

I've had fibromyalgia for 27 years now, and yes it took a lot of trial and error to find a medication combination that helped me ... But I know that if I wasn't on these medications then I wouldn't be working or doing half the stuff I can do.

Medication is not the answer for everyone, and indeed it's not the full answer for me .......I use a lot of other pain management techniques alongside them such as pacing, heat, exercise/keeping active, mercifulness, meditation, reiki, crystals, distraction, CBD oil, weighted blanket and more. Xxxx

Deepika1981 profile image
Deepika1981 in reply to Hazel_Angelstar

Hi Hazel, I have going through diagnosis to establish that I have Fibromyalgia. Doctor are checking to rule out RA. I am in severe pain whole day and have young kid. Plz advice what combination of medicines worked for you or which clinic to go to get treatment to reduce symptoms. Plz advice

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to Deepika1981

Hi, unfortunately what works for me might not work for you. I'm on pregabalin and mirtazapine, with tramadol and paracetamol.

Usual medication that is used for Fibro include amitriptyline, duloxetine, gabapentin and pregabalin, tramadol, paracetamol. Other pain meds such as ibrufen and codeine might also be tried.

Scotsed profile image
Scotsed in reply to Hazel_Angelstar

I have tried all the medications so far and the pain is getting worse. Can I ask what pain medication helped for you

The only thing that helps my fibromyalgia is no medication lots of rest no tap water and a vegan diet with lots of supplements. If I have sugar wheat gluten dairy or anything that’s not natural I feel dreadful and the pain becomes unbearable. When I lapse and eat certain foods I know not to touch I crawl to bed in agony. I started to keep a food and symptoms diary and did an exclusion diet and bingo I found out what made the pain unbearable and what stopped it. anyone who has fibromyalgia suffers as it’s a terrible illness. I wish one day there is a cure for everyone. J.

MaggieSylvie profile image
MaggieSylvie in reply to

You sound exactly like my ex husband. He had OA along with FM and also seemed to be allergic to modern life - petro-chemicals, pine, sugar, wheat. Spent half his life in bed. The exclusion diet was an adventure for me but it didn't help anything. I think he was too negative and impatient. Well done to you for sticking it out and finding the culprit(s).

sidsue profile image
sidsue

To all Fibromyalga Sufferers ..I had a lots symptoms through school, they werent too bad.. growing pains they said.. but after my 2nd child 1980..my dr said it was post-natal, baby didnt sleep, through the day much..and as 6yrs previous I didnt sleep on a night due to my partner started having violent epilepsy, which only happened in his sleep..I couldnt sleep on a night and no longer got naps through the day..I didnt have a lot of support only my 1st son..who came home from school he would take his brother up and down the street..after 17 yrs my sons were older and had jobs ..my partner started to mentaly and physical abuse me ..so I left him..1995..I changed my Dr who sent me to specialist who diagnosed Fibro...Although my life got better the fibro didnt, I got married 2000, left my job in 2004, as I couldnt stand, they gave me a seat, I couldnt sit, I only felt better when I laid down...The Meds got stronger and stronger as my body felt like it was plugged into the Mains.. Although I still have fibro and sometimes I get really bad flare ups, caused by stress mainly.. My body hurts all over, I cant pinprick an area.. I am 65 yrs old next yr. I can honestly say after over 41 yrs of Pain, if you dont take some form of medication now, thats fine..I dont want to say you will.. but you 'probably will' in the future.. I am on Pregabalin, Diazapem, Dosulapin and mainly Zo-Morph, Amtrypilin when I get femoral sciatica, I hope you dont and the drs find something that works..as most people recovering from Covid are getting similar symptoms to that of Fibro... Back to Basic Information about Fibromyalgia in 1990. Fibromyalgia is Chronic pain and Chronic Fatigue in the Tendons, Ligaments and Muscles...The brain is just one of the muscle's too. Fibromyalgia is usually caused by Trauma, Birth, being in a accident or having painful operations, Mental abuse or a breakdown, Physical abuse and Rape, also lack of constant 6-8 hrs deep sleep....which I have had most of these, the more Trauma the more pain..

Soft Huggs to all the Fibro sufferers out there...Mild or Chronic

in reply to sidsue

I am so sorry to hear what you have had to go through and yes you are correct about the causes of fibromyalgia. My son never slept and my husband was no help I went through a horrible divorce and so much more. Keep a symptoms diary and go to your dr to see if they have a a more clearer idea of your symptoms and to see if there are not any hidden other illnesses. I started with CFS. It took 10 years of see many drs and getting fobbed off multiple times before an alternate therapist on one visit knew what was wrong with me. I finally got a diagnosis when I insisted on seeing some one and further along I developed fibromyalgia which took 2 years before I was believed and eventually I got to see a neurologist who diagnosed on the first visit. A lot of people with CFS go onto develop fibromyalgia and vice versa as they can be linked in some way and are very similar. Do you find certain foods make you unwell as I find now I have to be so careful what I eat or I hobble fo bed in agony. Try finding a good dr and see if they can suggest something that may help you. I found not drinking tap water changing my diet and taking supplements was the only thing that helped me but I know it doesn’t work for everyone. Could they send you for hydrotherapy or even acupuncture as both of these helped me a lot. Have a lovely day and I am just so sorry that your drs didn’t know what was wrong in the first place and that they wasn’t able to diagnose you straight away as I was told that the faster you are diagnosed the easier it is to recover or for it not to be as bad. I think it’s because it’s left so long without a diagnosis and treatment that it gets so bad. I hope you have a lovely day and that someone can help you get better. Take care. J

MaggieSylvie profile image
MaggieSylvie in reply to

Interesting what you say about tap water. I have been drinking only filtered water (a simple filter jug and tap water) for some years now. Perhaps that is the reason I don't suffer so much from FM anymore - it's other things nowπŸ™„

Missspringsummer profile image
Missspringsummer

I agree, the more medications you take every day the more side effects you get, which cause other health issues. I find heat and massage the best therapy.

Oct7 profile image
Oct7 in reply to Missspringsummer

Yes heat and my Osteopath help a lot I always seem a lot worse in winter or cold weather my shoulders & knees are bad at the moment .

lolacat profile image
lolacat

Not sure I would find a consultant who made a diagnosis and then says that there was nothing he could do exceptional. And you must have read of many people on here who do use medications successfully so what are you saying? They’re all fibbing? Or (rather more provocatively as you said to another contributor who didn’t agree with you) their condition must be a milder form than yours?

It hasn’t been my experience, and after much trial, including finding medications prescribed for other issues worked, I have a cocktail of gabapentin, etoricoxib (an anti-inflammatory), zapain, oramorph and an anti-depressant. In extreme circs (my legs and back go into severe spasm) I have a muscle relaxant I can occasionally take too. This does not get rid of pain entirely but it reduces it to a level where I can work - I have a busy, professional job, at the moment working full-time because of covid .

It’s depressing enough that the medical profession will sometimes claim something β€œdoesn’t work” even when as a patient you know it does. And I’m fortunate that doesn’t often happen to me. But someone within the community insisting we’re wrong too takes the biscuit. I’m not suggesting that anything medication wise works for you β€” it may not. I do feel sorry for your consultant experience though. And do remember that what doesn’t work for you will do for someone else.

MaggieSylvie profile image
MaggieSylvie

As yet there is no cure. That does not mean you can't get some relief. If you worry about what pain killers will do to your stomach lining, there are remedies for that too that will enable you to take the pain killers without causing damage. The Pain Management Clinic (see your GP) can also be very helpful. One of the things they recommend is distraction. Don't be fobbed off, Cumnock. If your GP won't try harder to find something that helps you (and we are all different in what we need), change your GP. Good luck.

softekcom profile image
softekcom

Rest is the only remedy that works for me. But this means leave from work and housework, which then increases stress levels.

Midori profile image
Midori

For me, at least, Attitude helps immensely with Fibro. I'm an Obstinate old bat, and I don't let my body dictate to me. If I want to do something, I will, especially if it is a challenge.

OK, I cannot do the things I used to, Rockclimbing, Horseriding, Archery, Fencing, Aikido, because at 72 I don't have the strength or stamina any more, and I have to be relatively sensible. Most of my life I also danced, Ballet as a child, then Ballroom, and finally Bellydance, which helped me keep my joints moving and relatively supple. Now my knees are worn out!

When I was first diagnosed with Fibro, I was put on drugs for blood pressure, Statins, things for the gut problems, antidepressants and painkillers.

I have steadily taken myself off them over the years, the blood pressure and Statins first, as my high BP was down to stress and resolved quite quickly. Gut medication followed when I realised what was causing that problem, the antidepressants went next when it became apparent that the problems came from a former abusive partner, whom I was still allowing to influence me from beyond the grave. He had taken over my inner voice, so I told him to get out of my head. Which leaves the painkillers.

I was on CoCodamol and CoDydramol, with Nortriptylline for muscle relaxation at night. The Nortrip went first. CoCodamol went next, and now I just take Ibuprofen and maybe four or five doses of CoDydramol in a month.

There is a school of thought that Fibro is triggered by Extreme Life Events, and that we sufferers have the problem of our Adrenal Glands kicking out far too much Adrenaline; as if the switch has been set to 'ON' at all times. As a person who has suffered extreme Spousal Abuse, and even 30 years later is still a twitchy wreck at the sound of the phone and door bells, etc., I believe firmly that there is something in this. As a retired nurse, I can state that this could easily be the reason for the extreme tiredness an exhaustion we feel, and why we have trouble sleeping.

This is basically my story for what it may be worth; hope it can be of some use to you.

Cheers, Midori

E3178 profile image
E3178 in reply to Midori

Totally agree as am now trying to recover from long term abuse.

Boyboy15 profile image
Boyboy15

I wish everyone well on this post. It has been really helpful to me.

I can not take any form of painkillers as I’m an addict in recovery & don’t want to potentially get hooked on prescription drugs again & relapse.

Reading everybody’s comments has really helped. I went private after my doctor who was so helpful could no longer help me.

The doctor/specialist also told me that it is to do with your gut. So like the lady mentioned. ( forgive me I’m in a flare as we speak. I can’t member your name) as said.

Going gluten free & diary free has really really made a huge impact on my fibo.

I take lots of supplements as well ( magnesium, turmeric, proboticts ginseng etc) I stay away from take aways & try to have as less sugar as possible. Which is hard for someone like me.As I crave the sugar!

I also exercise in the form of a wobble machine that really helps warm me up in the mornings. Gets me going. It really helps me.

Today the only thing I can do for myself is rest & eat right. And know as reading all the comments from the people that have had this for many years, it will pass.

I also believe I have developed this illness from being in a Abusive relationship. The trauma has to release from your body in some way. I guess this is it.

I must stay positive & know that there is always someone worse of than me. There is people living in the streets homeless who no doubt have this condition and worse.

I’m recovery in a warm home & in a nice bed with good friends around me that support me & will help me at anytime.

I do wish everyone well & thank everyone for there comments. This forum is great xx

Kitten-whiskers profile image
Kitten-whiskers

Agreed! I found the Dr Leon Chaitow fibromyalgia and muscle pain book amazing, trouble with all these drugs is that they just mask the problems and cause endless other issues

Broadfield profile image
Broadfield

After years of ME then Fibro and my regular gp not being very helpful, saying just take paracetamol, I changed gp. I'm now on Duloxetine with Diclofenic for when it's too painful to walk. It's a massive improvement!! I have just driven down to the beach and had a little walk on the sand while the dog played!!!! Unheard of a few months ago.

It's trail and error as we are all different but explore other options. Advice on here is so helpful so make a note of anything that sounds good to you and talk it over with your gp.

I did the same as you with friends, it's so important to have understanding and care.😊😊

queenie60 profile image
queenie60

Its hard when your i severe pain just in the middle of my worst flare

up ever.

Alliswellforever profile image
Alliswellforever

I was prescribed Naltrexone low dose for fibromyalgia. It’s kinda experimental, but I’ve seen improvement.

Alanna012 profile image
Alanna012 in reply to Alliswellforever

Did your doctor suggest it? I want to suggest it to.my doctor.

paula9087 profile image
paula9087

I find it hard to deal with, I have trouble in finding my limit in what I can do. It makes me feel useless which doesn’t help mentally. Just take each day has it comes. Must be kind to ourselves x

Canbedone profile image
Canbedone

I try to keep meds to a minimum but when I get major pain and muscle lock-ups, Naproxen works for me but only for three days max. During the relief I try to move as much as possible to regain the muscle usage.

Meds are likely essential for those with neurological effects though.

Glad to hear you have found something that works for you, I too find warm baths work wonders.

Alanna012 profile image
Alanna012

It's a bit irresponsible to assert that pain relief doesn't help, and then say others must not be as bad as you, as everyone is different, but I do understand where you are coming from and have tons of sympathy for youπŸ˜₯. It sounds like you are in a really tough place. Do you have any other illnesses that are impacting you?

I was once told by a nurse who herself had Fibro that because she walks 5 miles at the weekend, I should too. I told her I couldn't manage a 5 mile walk, and she said condescendingly 'well if you don't want to, then don't!' Made me feel rubbish and like you, I remember falling into the trap of thinking: 'well your fibro is not as bad as mine'. But of course, in hindsight I don't know that do I I? have no idea how she manages her walk.

My point is not everyone with fibro experiences it the same way.

You just mentioned being able to have a drink with friends and it helps. Many people, myself included, can't tolerate any alcohol. If I drink even a glass of wine, I know I will be paying for it later. Does the fact you can drink and it helps you and I can't mean my fibro is worse than yours? Of course not. It simply means we're different, and good for you!

Try not judge others who can do more than you, or who can take that medication that you can't, or find a certain therapy helpful that does nothing for you as having 'fibro less badly than you'. It takes you to a negative place.

I'm telling you this cause I've been there, and also come across this at the other end(as I just mentioned) people who can do more dismissing others who don't respond to the same therapy or can't do what they can.

I'm dealing with me. I do not focus on what others are able to do/not able to do and neither should you. We should be supporting each other and helping to raise awareness of Fibromyalgia.

If you are feeling really low, and need someone to listen or moan to PM me! I'm all for moaning. If professional moaning was an occupation I'd be in full time employmentπŸ˜„. Got the πŸ† and everything!

Dizzytwo profile image
DizzytwoModerator in reply to Alanna012

I think thats spot on IMO. I would also just like to add if I may. I think our mindset and personality can go a long way in dealing with any kind of chronic illness and pain.

That's why I think those with a more positive attitude going through a flare up for example seem to come out the other side faster than others.

I have had fibro for 35 years I'm now 64 and do not take medication. That does not mean I'm not in pain. I'm also crippled with OA I've been a wheelchair chair user for over 20 years. But when people hear I don't take medication then I'm looked at with raised eye brows πŸ˜³πŸ€”πŸ€£ so yes we should never judge others by what we do and how we feel IMO we all suffer and we all deal with it in our own way. After all having fibro is not a contest. Its not about how bad someone is. Its the fact a person suffers with fibro at all that should mean we understand what they are going through. This is just my own personal opinion. Have a good day everyone ❀️

Momo

Alanna012 profile image
Alanna012 in reply to Dizzytwo

Couldn't agree more! I also hardly take any meds just occasional Amitriptyline which doesn't come across well with health assessments or when going to the Doctor.

Yellow-sun profile image
Yellow-sun in reply to Alanna012

So true,alana I only take nortriptyline because of where I'm so sensitive to meds,so drs seem to think oh your pain can't be that bad then

Cumnock profile image
Cumnock in reply to Dizzytwo

Like you Dizzy too. I dont take medication. For me nothing touvhes the pain. I have just learnt to live with it. Had an op on my leg but it hasnt worked. Seen a lovely specialist today who has told me that so much scar tissue has been left behind i need another op else i wont be able to walk like you. Like all with fibromyalgia you dont look ill so people dont understand how you feel. Just like having some nice time with friends and a little bit of alcohol that does help a little to get to sleep. Hope you get a little bit of rest tonight xx

mybehcetsxx profile image
mybehcetsxx

It varies for me. And I do not understand why.

I have times I can take paracetemol and others I swigging the oramorph, which still don't take away the pain, just makes me sleepy .

What helps me is understanding and reading my body and being mindful of my mood, whats happened such as any triggers for strong emotions so I can deal with as I go along.

Its a constant analysis of treatment needed as and when my symptoms flare up. I have to be as objective as I can.

But there's plenty of times I think f**k this s**t! I've had enough, and feel completely helpless.

Your right the biggest battle is with ourselves.

mybehcetsxx profile image
mybehcetsxx

Oh wait I forgot, lol, a good pain reduction therapy that works for me is sex !

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to mybehcetsxx

there is research that supports this just as there is for pregabalin et al. Single data points are bad to extrapolate from.

mybehcetsxx profile image
mybehcetsxx in reply to desquinn

Sex is an excellent form of exercise which can include stretching, cardio, weight lifting. It also includes massaging and encourages the release of dopamine and oxytocin the happy feel good hormones. I know of not one person who has said they feel like crap after an orgasam! So combined exercise and release of hormones is no way a comparison of pain relief to that of pregab or any other lab induced pharmaceuticals! Thats as equal comparison of blow up dolls or any other sex toy to sex with an actual person.

There is none.

Sex and drugs work different I would much rather sex as my pain relief than a pregab lol

And you get a much better sleep after sex 😴

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to mybehcetsxx

my point was there was research for both. Also the hormones are some of which that are promoted by some of the meds. And the meds can give more long term and background relief.

Your local Asda will tolerate you popping an extra pill but not some fruit aisle gymnastics!!!

mybehcetsxx profile image
mybehcetsxx in reply to desquinn

Also I said sex is a good pain reduction therapy for me! Short term, some painkillers can help but sex ( For me) always help. I've never felt worse after only better

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to mybehcetsxx

but you are saying elsewhere "The drugs don't work!" which is an absolute that I do not agree with. They do not work as well as we would like and finding the one that works best for an individual is a right pain.

Activity (incl. sex), mindfulness, PMA, meds, alternative treatments all play there part. In a room of 10 you will find at present that they are all in different groups of treatment pots.

Dizzytwo profile image
DizzytwoModerator in reply to mybehcetsxx

Hi, it's good to hear you have found something that works for you. But there are many fibro sufferers who also find sex too painful. We have had many posts over the years from people expressing that they just can not cope with sex and partnerships have actually ended because of the pain when having sex.

So I guess it's like medication what works for one may definitely not work for everyone sadly xx

mybehcetsxx profile image
mybehcetsxx in reply to Dizzytwo

I suppose there is truth is that too, which is a terrible sad state of affairs. However if something doesn't work today there's no saying it won't work tomorrow ive found that with medication definitely. The body and mind are so complex I think we need to always try because one thing that's certain in life is change. So what works today may not work tomorrow and vice versa but never give up

πŸ’–πŸ™‚πŸ’–

in reply to Dizzytwo

Help me momo I don't understand whether I should carry on with my meds now stop taking them can't get hold of my gp practise for love nor money been in a really bad flare for a couple of weeks now and this confusing thread has sent me close to the edge, I'm losing the will to live

Dizzytwo profile image
DizzytwoModerator in reply to

Hi Malmal, why do you think you should stop taking your pills? If you need to speak to an emergency GP have you tried ringing 111. Please don't read this post or any post you may find upsetting. You can always speak with a pharmacist over the phone too. Please don't stop taking your medication until you have spoke with a GP. Xx

in reply to Dizzytwo

Thanks both you and desquinn, I didn't consider 111 I thought they were more for emergency situations and I wouldn't want to use up their time, I just seem to be hearing so many people recommending not using meds these days? I won't stop taking mine until I can get hold of my Gp thanks again xx

Dizzytwo profile image
DizzytwoModerator in reply to

Hi Malmal, to take any kind of medication or not is just a personal choice. Because it may not work for some people that does not mean it will not work for everyone. If it is helping you then I would definitely stick with it. That's just my personal opinion.

But if you feel your having problems or it's not working then please talk with your doctor. There may be alternatives to try. Like I said before no one should ever just stop taking meds without talking it over with your GP.

And please if you find any post upsetting please just move on to another one. We never want to see any member upset if it's possible.

Take care and I hope you enjoy the rest of your day πŸ€—πŸ€—

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

as Dizzytwo says do not stop your meds without talking to your GP. Your post is one of the reasons that I interact on these type of posts as people can be put off taking their meds. Do not let perfect be the enemy of good is appropriate here.

mybehcetsxx profile image
mybehcetsxx

The drugs don't work! They mask, somewhat slightly, we build immunity to them, develop side effects and move on to the next!

Fact

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to mybehcetsxx

not sure this is the case but there is a difficulty finding the drug that works for the individual. Meds can be enablers that allow activity to play its part as opposed to just degrading quality of life over time.

jannah profile image
jannah

Hi all I have been going through all these aches and pains and sleepless night and been called all sorts of names and also no I'm just getting confused and able to concentrate even to do something that I need to do and if I decide to to make a cup of tea is a struggle for me to even hold a can't because my joints in my fingers are killing me.

And all I'm getting this all you been lazy will you be in this or you doing that I just want to get my head around it and focus and exactly what is a cause of fibromyalgia and how does that play your new mentally physically and psychologically so I can get a clear picture and explain to my doctors to see where can I get some form of help.

Is there any help that I can get

This lockdown restriction doesn't help I really don't have much friends I'm avoiding all of them because they've just drained me instead of helping me.

What are the things that you can do to ease the situation get some rest as well because sleeping is my issue now I just can't sleep I once woken is very difficult for me to settle back and then I can't concentrate at all during the day I'm like a zombie

softekcom profile image
softekcom

Clearly, for some sufferers the condition originates in a past traumatic experience and relief comes from the mind and attitude . But for me, this is a purely physical illness. I have never suffered from depression or anxiety, nor been in an abusive relationship. For a long time I have suspected that Fibromayalgia has been treated as a parking lot for cases where there is no clear diagnosis but which share the same broad widespread pain and fatigue (common to several conditions). Of course this does not mean that there are no genuine fibromyalgia cases. There are - but the waters are muddied. There is more than one kind of fish in the fibro pool. That is partly why there is such diversity in the experience and management of the condition. And then there is the nature if the condition itself.

For example, I work full time in a demanding role and I'm a single Mum. (I do have crashes and take 15 days of sick leave a year.) What I do is unthinkable for many sufferers. On the other hand, I have read posts on this forum by a sufferer who runs half marathons - I cannot do brisk walking for more than 20 minutes.

Whiteclouds profile image
Whiteclouds

I retired from work early because of illness sometimes I have so much pain it takes my breath away and makes me cry it is relentless thankfully voltarol gel 12 hour helps me ibuprofen magnesium malate MSM and NAC capsules and red light therapy but have to do this every day or the pain becomes unbearable

MaggieSylvie profile image
MaggieSylvie

Hi, no??

Dizzytwo profile image
DizzytwoModerator in reply to MaggieSylvie

Sorry Maggie, started to write and lost the page lol I was going to ask if you realised this is a 3year old post? Not sure what you mean by your Ex was not J? I have deleted my previous part reply xx

MaggieSylvie profile image
MaggieSylvie in reply to Dizzytwo

Hi Dizzy, I didn't understand what your response meant "hi no" and then I thought "Oh I'm giving away personal information on someone who may be on this forum. When I looked again at the post I was replying to, I saw it was signed "J", and J is/was not my ex! So no indiscretion there. πŸ€—πŸ€—

Dizzytwo profile image
DizzytwoModerator in reply to MaggieSylvie

No worries, we got there in the πŸ˜ŠπŸ€—

MaggieSylvie profile image
MaggieSylvie

My ex was not a J.

Pinklover89 profile image
Pinklover89

I have been using cbd for the last couple of years to help with my chronic pain and I do think it helps especially to get a good night's sleep! I have tried the gummies and I have recently started using cbd bubble bath that I put in my evening bath, I have used the cbd muscle balm aswell but it's too slow a release for me so don't like the balm as much.

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