Is this as good as it gets?(recovery after flare-up)

All your fibromyalgia experiences, questions and answers.

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Is this as good as it gets?(recovery after flare-up)

Postby 2dartwork » Mon Mar 07, 2016 12:37 am

I'm trying to work out some sort of benchmark, a reality check, for what I need to adjust to, in terms of pain and mobility levels long-term.

Background: years of on-off back pain, muscle-spasms, leading eventually to horrendous flare-up (neurological symptoms, numbness, weakness, pain, muscle spasms, exhaustion, disorientation etc. etc.) .Long wait, only to be dismissed by neurologist without scan. GP refuses to give diagnosis, but is treating as if fibro, and has finally prescribed amitriptyline.

Symptoms are definitely better than they were (don't think it has much to do with amitriptyline as still on v.low dose), I have more energy, and the pain is less intrusive into my daily life, but...I've had to give up most of the things that I used to enjoy. Even simple things, like reading and knitting, are difficult. My mobility is limited some days and unpredictable. I'm nervous about going far from home, because I've had times when I became disorientated and lost. My hands are still clumsy, my memory not great, my ability to multitask limited and I get overwhelmed at. the. slightest. thing. It takes a lot of work just to function at a superficially level, so I have limited tolerance of company. And, I'm pretty miserable company, anyway!

So...Is this it? Is this as good as it gets? Or am I still likely to be at the tail end of the flare-up that started in July? I have no other illnesses (AFAIK) to impact on the fibro. I know everyone is different, but how long does a flare-up usually last? I'm low, but trying to come to terms with my limitations and set up my life in a way that makes things easier for me. Not knowing what to expect long-term makes it harder to do that.
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Re: Is this as good as it gets?(recovery after flare-up)

Postby heather trippett » Mon Mar 07, 2016 3:43 am

sorry to hear your in so much pain :cry: i know how u feel im sorry to say the attacks can last up to 3mnths or more :too-upset: with little flare ups inbetween hope it get a little better swn xx
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Re: Is this as good as it gets?(recovery after flare-up)

Postby sandiepandie » Mon Mar 07, 2016 9:20 am

Firstly I would go back to your gp and DEMAND a referral to a consultant who specialises in fibro - usually an arthritis one - but you can check on your local hospitals website and then ask your gp to refer you to them. This is your right under the choose and book scheme.

I would also ask for a referral to a pain specialist - again one that deals with fibro.

2nd we are all different when it comes to flare ups. Some last a few days, weeks or even months. Flare ups seem to be different for each of us with variations in what is affected.

What IS important is that you are NOT fobbed off by your gp. If he won't help - then see another doctor in the practice or change gps. You're worth far more than shoddy treatment.
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Re: Is this as good as it gets?(recovery after flare-up)

Postby AlisonL » Mon Mar 07, 2016 9:39 am

Agree with sandiepandie. You deserve a proper diagnosis, and rheumatologist good place to start. They can then refer you to pain clinic. The low dosage of amitryptilline is the correct one, for fibro it is used to calm nerve pain at night and thus promote better sleep, large doses are used for depression.
While you are waiting to see a specialist try self medicating with supplements - Magnesium, vitamin d and vitamin b are among the most commonly recommended, do a little research or ask the good folks here for suggestions. Pacing and mindfulness are also good practices to try. Good luck.
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Re: Is this as good as it gets?(recovery after flare-up)

Postby 2dartwork » Mon Mar 07, 2016 11:58 am

Thanks.

I guess part of the problem is that working through the system takes soooo long in this area. It took 3 months to persuade GP to give me a referral to a neurologist, then another 3 months to the appointment (neurologist discharged me within 15 mins!), then doc wouldn't do anything until he got the neurologist report (which took another 2 months), and I've only just had the blood test results back from the neurology appt. which was back in December! Anyhow, blood tests show major vit D deficiency (which I suspected and have been supplementing for...along with vit B and iron etc).The GP I was seeing for several months suddenly left the surgery, the replacement has now gone on paternity leave...You get the picture!

GP seems to think I don't need a diagnosis at the moment, but that it's more important to just 'treat the symptoms'. I disagree with him (I think docs underestimate the need for patients to have a legitimate label for their symptoms, especially if those symptoms are seriously impacting on daily life), but it's been made clear that I won't get any further through the system unless I take amitriptyline for a few months. I know at least one other local Fbro sufferer who has been refused a place at the pain clinic because she didn't like taking amitriptyline and stopped taking it. GP says that if amitriptyline doesn't work, he'll refer me on ( to a rheumatologist, I presume). If amitriptyline helps, I guess I'll just have to lie ;)

So...I'm jumping through the NHS hoops on a very slow conveyor belt to get to a place where (in theory) I might actually get the help I need. What I'd really like is some physical therapy to help with my butt muscles (piriformis, I suspect) as that pain has been a limiting factor for years, and I really need a physiotherapist who treats me as a 'whole', rather than focuses on one teeny part of me at a time. But, I think I'll probably have to go private for that, as my experience of NHS physiology has been: 6 weeks of inconsistent therapy from different physios, each with their own theories, and no overall 'whole body' approach. At least if I have a fibro diagnosis, they won't keep telling me that 'pain is good' and I should 'work through it' ( which has been their mantra for the past 20 years :/ )

In the meantime I'm trying to adjust my life to a manageable level, so I don't trigger another major flare-up. I guess that's why I'm trying to work out if, where I am, ( 8 months on from the start of the worst symptoms) is as good as it's going to get. I'm used to years of on-off unexplained pain, but until the past 2 or 3 years have always had periods when I felt able to regain *some* fitness and have something resembling a normal life. If that's not going to happen then I'd rather find coping strategies now. I'm guessing that after 8 months, this level of pain, immobility, and mental state might be the baseline I have to work with.
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Re: Is this as good as it gets?(recovery after flare-up)

Postby Mk1divemaster » Mon Mar 07, 2016 2:48 pm

Hi, I'm hoping I'm at the tail end of a flare up which started in reality last October. My diagnosis was made by a rhuemy around 12 years ago.
It's the last couple of years when things started to deteriorate for me , up until then I had been coping just taking sertraline 100mg and paracetamol when needed.but silly me thought I was ok enough to stop the ad! Wasn't my best idea ,as things just went down hill from there . When I tried to get back on the sertraline it didn't have the effect it used to,which started a roller coaster ride of drug trials from my gp.
First I was put on Citalopram and gabapentin, really couldn't hack it. Then in October when the flare really took hold my wonderful gp tried me on fluoxetine (Prozac).the worst side effects ever!! And just made it worse. So he's trying me back on sertraline now , it's doing great for my mood ,but not the pain. Went back to gp and he said we have to try amitriptaline in a low dose at bedtime as well as the sertraline in the morning. I'm torn between the devil and the deep blue sea at the moment ,because I feel the meds are making the condition worse (well not the amitriptaline because I haven't taken it yet reason : don't want to wake up feeling hung over ) . My symptoms at moment are tightness at back of legs that radiates into my backside, pain between shoulders, ankles and elbows are sore too. If I don't take the ami I have a feeling my dr will throw the towel in. I don't want to believe that this is it as I have got to a place before where I have been able to cope and I want to get back there again. I still go to work as I work for myself, but over the last few months it's been tough.lets hope the Spring gets into my step as well as the weather ! I hope your flare goes ASAP
How long have you been on ami? At what dose ? Do you think it helps?
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Re: Is this as good as it gets?(recovery after flare-up)

Postby 2dartwork » Mon Mar 07, 2016 3:56 pm

I was on 10mg for 2 weeks, then increased to 20mg. The first 10 days were a nightmare - I felt very spaced out all day, struggled to drive, etc. and the muscle spasms were worse. After that, the side effects decreased and, as long as I take the drugs before 9.30pm, the morning effects aren't too bad. (I work evenings, so that timing isn't always possible).

It's hard to say if amitriptyline has helped as it's still early days and it's supposed to take at least a month for results. It does seem to have taken the edge off the aches and pains, and I'm walking better, and longer, but as my fibro is so variable, it's hard to know exactly how much effect it's having, yet...

I didn't have any major sleep problems before starting it (one of the reasons I wasnt keen to take it was that I didn't want to mess up my sleep). If you have sleep issues then it's possible it will help with that. For me the sleep is very 'drugged': sometimes I've found I've inflicted small injuries on myself in the night and not woken up as a normal person would, which concerns me a little. Everyone reacts differently, though, so I guess you won't know until you try. I've heard positive things from some users of the drug, so I'm willing to give it a go and we'll see. I have to stay as positive as I can.
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Re: Is this as good as it gets?(recovery after flare-up)

Postby Mk1divemaster » Mon Mar 07, 2016 5:23 pm

My flare ups usually come after a bout of insomnia due to anxiety, that's why my dr thinks treating the anxiety with anti depressant meds will start the process of me getting better.
I just concerned that it's not working this time around , as my symptoms seem worse , I get a burning sensation over my body which I'm not sure if this is a fibro thing or the med, my dr reckons it's an anxiety thing that the meds will make worse initially but then subside over time.
Have you ever felt this ?
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Re: Is this as good as it gets?(recovery after flare-up)

Postby pad all » Mon Mar 07, 2016 6:03 pm

Sorry to hear you are in so much pain. I went to a private hospital and paid for a consultation with a rheumatologist and got a diagnosis of fibromyalgia. Well worth it as my GP did not have a clue. Next I took the advice of someone on the forum and found a local practitioner of the Bowen technique which is about pain relief. This treatment is non invasive so does not hurt. I had a thorough examination and this lady is also a qualified medicinal herbalist. Amazed at what she found wrong. She also advised me to find a local yoga exercise class. Luckily there is one for seniors which concentrates on muscle and joint pain. Found a group of new friends. Also found that certain food/drinks upset me particularly my legs. Avoid tomatoes and peppers in particular as they are inflammatory to joints and peppers raised the level of lactic acid in my legs. I find it,s important to get into a routine. Try looking on the web at the research of Dr Frank L Rice of Albany Uni New York. He explains causes of fibro very well. I now know mine is hereditary from my mum, but people develop it for differing reasons.
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Re: Is this as good as it gets?(recovery after flare-up)

Postby Mk1divemaster » Mon Mar 07, 2016 7:41 pm

Yeh I too had to pay to see a rhuemy! As the dr didn't have a clue when my bloods came back ok.thanks for the info will look that guy up :-D
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