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what is the best treatment for fibomyaglia

eo41 profile image
eo41
30 Replies

just found out i got fibomyaglia been put on Tramadol in pain and so tired 24/7 dont no how much more i can take please can some1 tell me whats the best 2 take thankyou

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eo41
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30 Replies
Sniffer8 profile image
Sniffer8

Hi there, so sorry to hear you're going through this. I tried Tramadol once and it knocked me for six. Given some time you should develop some tolerance, or request an alternative? I'm sure like me you are already tired out enough without drugs that sedate you further. Rooting for you like everyone else here.

eo41 profile image
eo41 in reply to Sniffer8

thank you glad i found this site so i dont feel like im the only 1 going throught this

bluebell10 profile image
bluebell10

hi eo41, if you have only just begun treatment for pain it does take time to get your pain under some sort of control, are you taking only tramadol? did yr gp say to take paracetamol as well?, it may be an idea to go back to your gp & ask if there is anything you can take with it, he may prescribe you pregabalin or gabapentin also. i found that tramadol & paracetamol just weren't enough to even take the edge off until i was given pregabalin to take twice a day, that did help, a big part of the battle with this horrible thing is learning to come to terms with it. i only just have since being on here for a few months after over 4 yrs of thinking i was alone & not knowing what the hell was wrong, so i think the 1st thing to try & do is get your pain under control.then you need to pace yourself,don't do too much.i know you probably can't do anything at the moment,but you will be able to only not as much & not too much in 1 go, you're not alone we are all here for each other, take care x

eo41 profile image
eo41 in reply to bluebell10

thank you

TheAuthor profile image
TheAuthor

Hi eo41

Firstly, I would sincerely like to welcome you to the forum and I really hope that you find it as useful as I do.

I am so sorry to read that you have this horrid illness and I sincerely hope that you are feeling as well as you can be today? I have pasted below the FibroAction information link for you to have a look at when you get a chance. I think that you will find it extremely informative.

fibroaction.org/documents/l...

I was wondering if your GP has given you any referrals such as to a pain management clinic or to rhuematology etc. As this appears to be standard procedure for many of the members of the forum?

There are many different kinds of pain killers that your GP can give you if yours do not work after giving them a good trial. This is where the pain management clinic comes into the equation. I take Nortryptaline and Co-Codamol but they do not always work. I think this is something to discuss with your GP. Please remember that some patients cannot take anti-inflammatory pain killers due to other health problems, so again, this is something to discuss with your GP.

I genuinely hope that you can find all the information that you are looking for and that your pain starts to ease very quickly. I really look forward to seeing you around the forum.

All my hopes and dreams for you.

Ken

Milynda profile image
Milynda in reply to TheAuthor

Hi Ken, I hope you are well today also. I have not seen this leaflet before. Do you know if it is possible to get hard copies of this? All the best, Milynda

Mdaisy profile image
Mdaisy in reply to Milynda

Hello Milynda,

This is the old FibroAction factsheet which is informative (so no hard copies I'm afraid), however the information has been updated since then please see our website for the factsheets which you can download and print;

fibroaction.org/Pages/About...

P.S Watch this space is the information team are currently working hard to up date again !

Best Wishes

Emma :)

FibroAction Administrator

eo41 profile image
eo41 in reply to TheAuthor

thank you

karma_13 profile image
karma_13 in reply to TheAuthor

Links not working?

Mdaisy profile image
Mdaisy in reply to karma_13

Hello Karma_13,

Yes I know, our website is down at the moment, I intend to contact our CEO to try to find out what is happening ?website update maybe. As soon as I know I'll let you know.

Emma :)

TheAuthor profile image
TheAuthor in reply to karma_13

Hi karma_13

I sincerely hope that you are feeling as well as you can be today? I have just logged on to answer your question but I see that Mdaisy has beaten me to it!

When the website is back online I would try Mdaisy's link to Milynda and not mine, as mine was for an older pdf file, the other is more up to date.

Take care and I sincerely hope that you find the link useful.

Ken x

Mdaisy profile image
Mdaisy in reply to karma_13

Website is back up again, sorry for any convenience caused

moonstonebright profile image
moonstonebright

Hi eo41, everyone is different and so different meds help each of us. Unfortunately many meds don't help Fibro. I've tried different ones over the years. I also have Lymphoedema and migraine and scoloiosis and right now I'm on morphine and Gabapentin and a couple of antidepressants and other meds for hernia etc and all of this does ease my pain and the swelling from the Lymphoedema but not completely as that isn't possible with Fibro. I can now only walk a few yards with a stick and am unable to drive and so had to give up my career a few years ago. I hate what my conditions have done to change my life. I have found the chronic pain clinic to be very helpful. If there's one in your area, ask your doctor for a referral. Good luck!

April

Ginsing profile image
Ginsing in reply to moonstonebright

Morning Moonstonebright it is a rotten combination the fibro plus lymphodema I have the same. My meds sound very similar as well. I did see the lympho nurse yesterday and as usual got no answers i am doing all right apparently. She had never seen Farrow wraps so that was fun for her! As you know we just have to grin and bear it :D thinking of you hope you have a good day xGins

moonstonebright profile image
moonstonebright in reply to Ginsing

Hi gins, it's good to gave someone like you there who understand what this is like. I've only been to the Lymphoedema clinic twice and they ordered support stockings after measuring me and the next time fitted them and told me they'd review me but that was about 18 months ago! It's awful that we just feel left to get on with it!! These conditions can leave us feeling so alone and depressed, thank goodness for people like you and groups like this! Take care

April

sue32 profile image
sue32 in reply to moonstonebright

I'm the same ladies.....fibro, lympho, osteo! I've found this with the lympho clinic. You're treated until your legs have gone down then it's - bye bye, you're OK now!! Last time I went I was told my legs aren't big enough for made to measure stockings so they're looking for some off the shelf ones for me!! That was 2 months ago(!) Watch this space!!! XXX

eo41 profile image
eo41 in reply to moonstonebright

thank you

jillylin profile image
jillylin

Hi,

welcome to this forum. Make yourself at home, grab a coffee and pull up a chair..

I take Tramadol, it takes a little time to work flat out but it helps me. I have the extended release ones as the other type just made me sleep all the time. There are different things you can take and things to try. It won't be the same for everyone as it's very trial and error until you hit what works best. But you'll get loads of input from everyone here :-)

Hugs

Jillyxx

eo41 profile image
eo41 in reply to jillylin

thank you

omshanti12 profile image
omshanti12

Hello dear fibro friend eo41,

Find out as much as you can about this condition. Go back to your GP and ask for something to add in or try a different drug, eventually you will come across something that helps. Ask GP or Pharmacist how long till you should feel the benefit of a treatment and be careful not to stop anything too suddently, some drugs have to be tailed off gradually. I am currently taking Cymbalta (Duloxetine) 60 mgs at night and 30 mgs in the morning, with Paracetamol occasionally. This helps me enormously. Although I can still get a bad day with pain and fatigue, I now have a lot of really good days. At one time I had Gabapentin added in at night - this knocked out all of my pain symptoms but made me feel very hostile and irritable so I cut that out. I am going to go back to my GP soon to ask for something to help my quality of sleep as I have found that the better I sleep at night, the better I feel during the day. Poor sleep is a factor for about 80% of fibro sufferers - I get off to sleep ok but a lot of nights do not get enough of the healing, restorative stage 4 sleep - you will learn about that when you read up on fibro. However, what works for one fibro does not always work for the next person. Just persevere till you find what works for you.

Changes in life-style have also helped me a lot - exercise, whatever you enjoy, but even just a short walk in the fresh air will help release "feel-good" chemicals. Yoga or any stretching is brilliant. Warm bahs or showers, gentle massage. Eat a simple, healthy diet - try to cut out sugary foods, alcohol, fags and avoid caffeine later in the day so as to help sleep - remember tea, coffee, chocolate and fizzy drinks will all contain caffeine. Try to do some meditation, in particular "mindfulness" which is what the Fibro Clinic at Guy's advocate. There are lots of videos about this on Youtube. Also lots of chronic pain/fibro exercise/relaxation videos on there.

It can be a difficult thing to live with but things have definitely improved for me with all of the above. Remember to enjoy life as much as you can, don't forget to smile and laugh as often as possible. Try not to get too stressed about things (easier said than done, I know!) as this makes our symptoms worse. Also, keep an open mind about other causes for your pain, eg have you had MS ruled out? Some people are misdiagnosed.

I hope this helpls you dear friend and I wish you all the very best. Please let us know if you find anything that helps and it would be great to hear how you get on.

God bless and keep you safe,

Omshanti.

eo41 profile image
eo41 in reply to omshanti12

thank you

Milynda profile image
Milynda

I switched from Tramodol to Pregabalin and I woke up. There are side effects but it was worth it to me as I can do a lot more now than sleep.

eo41 profile image
eo41 in reply to Milynda

thank you

Stevan_Mcgrath profile image
Stevan_Mcgrath

Living with fibromyalgia is difficult, especially when the pain becomes severe.

Many sufferers fear that they will not be able to work, or that they would eventually lose their jobs.

But the effectiveness of treatment can be determined by on the patients themselves.

Those who suffer from fibromyalgia must ensure that they take the proper medication on time.

An active lifestyle also helps to relieve stress and reduce symptoms of depression.

Regular appointments with a physical therapist and massage therapy help relief pain and allow people to move about easily.

Fibromyalgia Treatment:

Fibromyalgia treatment methods may also vary accordingly.

It is important for a patient suffering from fibromyalgia to be treated by several different health professionals in conjunction.

This may include:

•General physician

•Physiotherapist

•Psychologists

After carefully assessing the patient, the doctor will draw up an individualized treatment plan.

This may include:

•A regular exercise regimen

•Antidepressant medication

•Physical therapy

read out more how painful disorder it is along with treatments & precautions.

consumerhealthdigest.com/jo...

Gracie_Allen profile image
Gracie_Allen in reply to Stevan_Mcgrath

Nice Info stevan!

eo41 profile image
eo41 in reply to Stevan_Mcgrath

thank you

justmai profile image
justmai

I think it takes time trial and error to find out what works for you. you have to give it time to work, I'm on pregablin, mst and a muscle relaxant, combo does work now, slowly over time I've finally reduced my pregablin from high dose to quite a low dose and it seems to be working ok, but only with the other meds, sometimes I have to take an extra dose of pregablin, but as I used to be on 300 mg twice a day and now down to just 150 mg twice a day, can afford that extra dose. still in pain when I wake up still in pain a lot of the day but it's manageable just

eo41 profile image
eo41 in reply to justmai

thank you

Mdaisy profile image
Mdaisy

Hello eo41,

Finding the right combination of medication for you can sometimes be trial and error . For instance I could not get on with Amitriptyline or Gabapentin but can take Pregabalin, Tramadol, Duloxetine & Pramiprexole,

FibroAction have evidence based information about Fibro based on up to date research, if you follow the link below you'll find factsheets about recommended treatments;

fibroaction.org/Pages/How-I...

Here is also a recently updated factsheet about Complementary Therapies as we have the Information Standard Certificate;

fibroaction.org/News/New-Co...

I hope you find the information helpful

Best Wishes

Emma :)

FibroAction Administrator

eo41 profile image
eo41 in reply to Mdaisy

thank you

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