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Fibromyalgia/ME

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Health & Wellbeing

' Forum started by AliCat, Jul 4th, 2015 at 11:16 AM.
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Aug 2nd, 2015, 09:53 AM  
AliCat
Maintainer
 
Join Date: Jul 2015
Location: Worcestershire, UK
Posts: 3,240

HW, you do work very hard, I don't know how you manage it so no wonder you feel exhausted. Have you ever tried duloxetine? I started on 30mg so a lower dose might be OK for you if you don't tolerate meds well. It really helps with my fibro symptoms and yes, there are side-effects to start off with but they soon go. Hope you manage to get a rest soon x
 
Aug 3rd, 2015, 02:17 AM  
thistle
 
Join Date: Jul 2015
Location: Glasgow
Posts: 480

So glad that you're feeling better AliCat. It's great when you get a medication that actually makes a noticeable difference.

I'm on duloxetine, not sure of the dose. It's one of those things that you don't think are helping, until you stop taking them for a few days and all hell breaks loose. Lol. If you haven't tried it HW you may find it helps, though I know that it doesn't work for everyone.
 
 
Aug 3rd, 2015, 16:05 PM  
Daniellejwx
 
Join Date: Jun 2015
Location: Crewe, Cheshire
Posts: 96

I'm not sure what to do. I went to the doctor for the first time with my symptoms a few weeks ago, confirmed fibromyalgia, sent for blood tests and told I would get a physiotherapy appointment. Blood tests came back 'no action', meaning they said what he was expecting. But I haven't yet had a physio appointment, and had no medication prescribed.

I've had a terrible weekend. Out with mum Saturday morning for 3 hours at an agric show, got in the car and we were both in agony (with mum suffering too). I got home, got on the sofa and slept for hours. My whole body was aching, and I started feeling sick and flu-like. Went out for tea, felt a little better, then got in bed that night and could not sleep or get comfortable at all. Finally drifted off early hours, then woke up at about 7am feeling horrendous! Physically couldn't get out of bed until midday when OH came round and more or less dragged me out. He's very good - he knows that I have to keep moving so he has to be harsh with me but I know it's to help me. I felt terrible but soldiered on and did the food shopping. Came back, relaxed for a couple of hours, then went out for tea with OH. Half way through my main course, just lost my energy completely. Couldn't even cut up my food properly and just felt totally drained. This is the worst I've ever been, and today my tailbone is painful again for the first time in almost 2 weeks.

I feel like if I make another doctor's appointment, I don't really know what I would say?! I've been once and I feel like I would be wasting their time going again to tell him the same thing. What do you all think I should do?

P.S. I have been taking 5-HTP from over the counter which has helped very slightly, but I just don't think it's enough.
 
 
Aug 3rd, 2015, 22:08 PM  
AliCat
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Join Date: Jul 2015
Location: Worcestershire, UK
Posts: 3,240

I wonder what else you take or what you've tried but can't tolerate. I couldn't manage without amitriptyline or duloxetine personally. They help me sleep at night and wake me up in the morning, plus they help with the pain.
I've also come to the conclusion that there is no point fighting this illness. If you feel exhausted you've got to rest. Stop what you're doing and get horizontal if you can! Rest is key. I've had to accept that my old life is over. I went out til 11pm on Friday night and I've been paying for it for 3 days. If you keep fighting it just gets worse. Learn to love staying in with your feet up. Go to bed and get up at the same time every day, your body will thank you for it. Plan ahead for days out and make them short. Avoid doing too much and paying the price days later. This boom and bust cycle is ultimately damaging so never wear yourself out to the point of exhaustion.
Go to your GP and ask him what medication he can offer you. It's trial and error and everyone's different. Ask if you have a CFS team in your area that you can be referred to.
Basically I know it sounds harsh but it's a case of accepting that you're ill and adapting your lifestyle to suit. It took me 2 years to let go and admit defeat. Now I've stabilized a lot more and know my limits. Hang on in there, you will find a way and we're here for you xx
 
Aug 3rd, 2015, 22:45 PM  
thistle
 
Join Date: Jul 2015
Location: Glasgow
Posts: 480

I also take tramadol, though I know a lot of doctors don't like prescribing it as it is a controlled drug, can have some bad side effects and is addictive. I've been off and on it for years and have never had any problems with side effects and withdrawal, but my friend was ill for weeks when she came off of it.

Tramadol is the only painkiller that really helps me when the pain is really bad.

Sorry just realised that I got mixed up in my last post and was confusing duloxetine with the meds I take for IBS (I blame the brain fog). I do take duloxetine as well, but would never go without it or I would really suffer.
 
 
Aug 4th, 2015, 12:19 PM  
Daniellejwx
 
Join Date: Jun 2015
Location: Crewe, Cheshire
Posts: 96

Thanks AliCat, I think I needed someone to just give it to me straight. I'm just sick of lying down! My OH is so much better with this than I am. He gets me up when I really have to, and sends me to bed when I'm worn out! I'm so lucky that he is so supportive and is getting to grips with what is happening to me. He's coping better than me!

I was taking citalopram for anxiety but it gave me terrible acid reflux and confined me to my bed. I'd rather be in pain and tired than feel how that made me feel!

I will maybe make an appointment to see the doctor again. On reflection, I think he is trying to keep me off meds for as long as possible, but I seem to have taken a turn for the worse over the last couple of months.
 
 
Aug 4th, 2015, 16:35 PM  
AliCat
Maintainer
 
Join Date: Jul 2015
Location: Worcestershire, UK
Posts: 3,240

Unfortunately I really wouldn't function without my meds so it comes to a point where you have no choice but to take them. I manage my pain OK with strong co-codamol and try to limit how many I take a day. Before I started the Duloxetine I found the AD Venlafaxine quite helpful. I would also recommend a really good magnesium supplement of at least 300mg once a day as it really helps with muscle pain and jerking. Some people manage their condition with clean eating/gluten free etc but I don't have the willpower. One last thing, try to have a walk every day, even if a short one. It's just one of those things that seems to help. It's the main reason I got a dog! At the beginning I could really only do about 50m due to pain and fatigue, but keep it going as it will help
 
Aug 5th, 2015, 22:41 PM  
HeavyWeight
 
Join Date: Jul 2015
Location: Scotland
Posts: 120

Hey loves.

Sorry you haven't been great Danielle. Just talk to your doctor and let them know you are not coping without medication. They can start a trial and error approach to find the best fit for you.

I was at the doctors today and got prescribed duloxetine. I really hope it works as I have been pretty bad lately. I am pretty sensitive to the side effects, but the fix says that this one is much better for that do here's hoping.

I am going to have to request an extension for my dissertation, as I am just too exhausted and my concentration is not there. I feel like I am failing when I have to get different allowances than well people. I already couldn't sit my exams twice due to being ill. Due to the fibrosis I now won't graduate until Summer instead of November .

My doctor has ordered new blood tests as manyarkers were wrong, for blood count and inflammation. I am also getting referred to a rheumatologist.

The advice in this thread about getting up and going to sleep at the same ye is spot on. It really makes a differences.

I hope you feel better soon!
 
Aug 6th, 2015, 01:50 AM  
AliCat
Maintainer
 
Join Date: Jul 2015
Location: Worcestershire, UK
Posts: 3,240

HW, sorry you're feeling rough. I hope doctor has stared you on 30mg of duloxetine. Mine gave me the full dose to start and I was suicidal for 2 days. It's a strong one, but if you can bear with it, it does get better.
I admire your determination with your study. I graduated just before my fibro really hit me. You must be so strong! Don't worry, you will get there. X
 
Aug 6th, 2015, 14:23 PM  
HeavyWeight
 
Join Date: Jul 2015
Location: Scotland
Posts: 120

Yeah my doctor gave me the 30mg tabs. Hopefully it will work out with out the side effects.

Hopefully my uni will grant the extension!
 
 
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