Status
Not open for further replies.

sar85

New member
Joined
Oct 11, 2017
Messages
4
Reason
Undiagnosed
Diagnosis
10/2017
Country
Uk
State
isle of wight
Hi. I am 31 years old and have the symptoms of fibro, my gp has put me on duloxetine 20mg twice a day but due to pain level they have upped it to 60mg daily. Im currently off work due to the symptoms and the constant fatigue. My hair is falling out too. I have been referred to rheumatology but the waiting list is12-14weeks.i am really struggling to cope and even daily tasks around house are hard.i dont go out the house much as the pain is bad and its just an effort. Any advice please x
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
366
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
This is definitely the right place for that, so welcome to the forum.

No matter what the diagnosis is, it is important to know that you need to put yourself first right now. So that means, taking it easy. This starts by doing basic simple things, like doing less work around the house on a daily basis. If you are in too much pain or are too fatigued, then you skip it all together. On an ok day, you just do the bare minimum. If you can get help with anything (cleaning, laundry, groceries, cooking etc.), ask for it. There is nothing wrong with asking for help, you can see it a social event where you ask a friend/family member for help, you turn on some music, work together, and have a nice cup of tea and a chat afterwards. Anything to make you feel less alone and less focused on how bad you are feeling.

You might also think about keeping a pain/fatigue diary so that you have all your complaints down on paper for the appointment in 3 month's time. In the meantime, talk to your GP if the pain becomes unbearable.

Sleep is also very important, as well as eating healthy wholesome foods and drinking lots of water. All the best!
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Vicky is spot on....this is time to take extra care of yourself...but at the same time try not to stop a little activity to keep yourself flexible.

This is a scary time for you..believe me we all understand...10 years ago exactly i was like a rabbit in headlights.

There is a book called first year of fibro by Claudia Marek which i found helpful at the outset and takes you through the shock and helps you learn to listen to your body....what meds are available and tips for coping with symptoms.

Let your doctor keep you off work until you have found your feet so to speak.

Some people do manage to carry on working ..others reduce their hours and for some working is simply too much.

Like Vicky says ask for help...use your energy for things that you enjoy and do the chores in small chunks as and when you feel able..even if its only 10 minutes and then rest ...then see if you feel up to continuing.

Its going to take a while for you to learn we cant do what we did before and its very frustrating and at times really upsetting.

I am not far from you in The South of UK....your doctor might be able to access councelling for you if you are struggling with the emotional impact and lifestyle limitations of the pain and fatigue...or a pain clinic i think offers the same.

Maybe get a referral for the pain clinic under way or CBT as im sure there will be a wait for those too.

Stay here and let us support you..ask anything or vent about your feelings and worries. There are so many lovely people here who are going through the same.

Take Care.
 

Sam66

Member
Joined
Mar 27, 2017
Messages
14
Reason
DX FIBRO
Diagnosis
08/2016
Country
CA
State
On
Vicky and Diamond are completely right. You need to listen to your body. When you are too fatigued to do anything then allow yourself to do nothing. You need to take the pressure and expectations off yourself and just let go for as many days as you need. If your feeling good than take a short walk. Start off slow and build yourself up as you can. If you can,Get yourself a good Councillor to help you deal with your feelings and accepting your new reality. Get a referral to a pain managemnt clinic to help you find ways to combat the pain and fatigue. Many of them offer services if you suffer from migraines. Ketamine and lidocaine infusions for neuropathic pain, Cognitive Behavioral therapy, nerve ablation. In Canada most of the services are payed by our provincial health insurance and the doctors in the clinic are anesthesia and neurology specialists not sure about where you are from. The key is to find everything that helps you even if its a little. I have tried acupuncture .....didn't work for me but does work for some. I have had success with Ketamine and Lidocaine Infusions. I have tried nerve ablation, unfortunately did not work for me but does work for some. I was recently diagnosed with 4 Brain Aneurysms and had 3 Coiling operations in 6 weeks and am now suffering very bad head pains which according to my neurosurgeons has nothing to do with the coiling so i will be seeing the pain specialists that handles headaches and get a referral to a neurologist. Also something to remember do not put everything down to the Fibro even when you have no idea whats happening to your body bring new symptoms to your GP so that they can be properly investigated. Had i ignored my exertion headaches, I would definately have suffered a ruptured brain aneurysm. If you GP is not in your corner managing all you physicians and supporting you then, please find another one because he or she is not the one for you.

Take Care of yourself. It gets better and you are a fighter.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
US
State
NY
What a fantastic advice Sam66 , and so as Vicky and Diamond.:smile:

I believe in less stress and guilt free environment. Put energy on something that give you the best sense of rewarding while having very low impact on your pains which can be avoid once you start paying attention on how you usually moved.

Positive mind activities and thoughts are a must for any fibro sufferer. Do what it feels right for you first and less what everyone else around or what social believe that you should be. Cause do more doesn't mean that you'll suffer less. Don't think you're being useless because right now you can not work, think vacation! eventhough it might not feeling like one. Give your self a break from all the stress you have carried and eat good diet. Not just anyone else diet but your own. The kinds of diet that your body feel the less amout of pains from. Cause most of fibro patient have lots of food intolerances do to IBS. Sometime it can change variety so study your self first is a very best bet to control your symptoms. I sill find new things all the time that surprises me about me. I find supplements adding very helpful cause fibro often deprive you of your daily mineral and vitamins like crazy. I lost my hair and my teeth crumbling out of my mouth do to it.

There are many helpful info , but be sure to pick what's make sense to you best. Cause many experiencing fibro differently. Some symptoms are the same or similar. Some might be too far different than you , but don't be discouraged by it. Be smart and don't waste your finance on things that doesn't agree with you. If any med doesn't agree with you , stop taking it right away before it making you feel a lot worst.

Fibro often made me think of the story of ' princess and the pea' . I often have to find the most comfortable clothing ( no seams no tags no tightness) and constantly adjusting my bed or sitting cushions. Cause god forbid if I find one grain of sand or small irritation I'll go crazy!
 
Last edited:

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,416
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Diamond and Vicky are exactly right in what they are advising, and I don't have anything to add to what they said about taking care of yourself, just want to say welcome.
And mention that you will need to inform yourself as much as possible on this issue and become your own advocate with your doctor(s) because they all too often do not really know much about fibro.

You will find support and good ideas here, so stick around if you want to.
 
Status
Not open for further replies.
Top