Sound familiar?

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Sound familiar?

Postby Bloomingbutterfly » Fri Feb 14, 2014 9:28 pm

Hello,

I was diagnosed with fibromyalgia and CFS mid last year after blood tests/scans and referral to general medicine. I became very ill after a throat and mouth infection(totally covered in ulcers, which I'm prone to but nothing like this) I was constantly in pain and aching all over, going from one room to the next was exhausting.

This went on for months, was doing blood tests every month to check my ESR levels which were high, general medicine also done various blood tests, and because most of them came back 'normal' I was simply diagnosed with fibromyalgia and CFS.

I would say in June of last year it seemed to calm down and felt back to somewhat normal, but then out of the blue in sept/oct time it came back, mainly in my back(always seemed to of had lower back problems/sciatica) my legs and feet.

Occasionally it will effect my arms and all over the body, like it feels very achy and heavy. With my back it seems to be in the lumbar region but it's very muscular feeling and at extreme times feels like it's seizing and I feel stuck. My legs vary from sharp, sciatic pain, dull ache to almost a tight sensation almost feels like its in the bone it's hurting most. My feet get very sore even when I haven't done much walking, so tender to walk on the heel, sometimes feels like a ripping pain in the arch. This all happens with bending, lifting and walking.

I've been given naproxen 2 times a day when needed and I take the strong co codamols, it tends to take majority of the pain away but still left with sore aches. I also suffer from anxiety which is a nightmare at times because I'm so exhausted from the pain and CFS it doesn't help the anxiety. I'm hoping to try and get a fitness plan to help, but that won't be easy coming across that.

Applied for ESA as I have recently lost my job to being off ill for a long period while still in my probationary period, but blessing in disguise as it was nearly 2 hours away and was taking its toll on me. Any info or advice on anything would be good :-D
Last edited by FluppyPuffy on Fri Feb 14, 2014 10:09 pm, edited 1 time in total.
Reason: Split large paragraph into smaller ones for easier reading.
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Re: Sound familiar?

Postby DeedleDee » Fri Feb 14, 2014 9:57 pm

hi there,
Sorry you're having such a hard time. I'm not an expert as I have only recently been confirmed as having fibromyalgia, despite having had symptoms for years. However I can tell you what my doc and consultant have both told me. Unless there's any evidence of inflammation (swollen joints, hands, feet etc or anything that may have shown up on a blood test) apparently naproxen won't help you. I'm not sure if that's right but that's certainly what I've been advised. I've also just been told by my consultant that co codamol doesn't help a lot for neuropathic type pain, so might not be suitable for a lot of us fibros - which is strange considering I've been taking it for years now and the only person who's mentioned that is my consultant. :crazy: maybe that's why I've been on it for years!!

I can sympathise with you struggling - it's not easy and although I've not had a lot of your symptoms there's many others I have had. I think maybe a trip back to the doctors and request a different treatment? Like I say I'm definitely not an expert and can only share my own experience.

Hope you feel better soon and keep us posted. You're not on your own and don't be afraid to speak up. It's only through doing that I've finally been diagnosed and am in the process of getting my medication correct.

Keep your chin up x :-D
D xx

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Re: Sound familiar?

Postby FluppyPuffy » Fri Feb 14, 2014 10:41 pm

:welcome: to our little FibroFamily Bloomingbutterfly :cow-wave: :cow-wave: :cow-wave:

I've moved you into here with this being your intro post. I've also split your post into smaller paragraphs as quite a few of us find reading larger blocks of text quite difficult.

There are a few of us on here with both FM and CFS cards in our collection, so you're in good company :bear-dancing: :bear-dancing: :bear-dancing: It sounds like your journey to being dx'd was relatively smooth.

The things you've described with how your conditions have been behaving over the past few months aren't too unusual, with things flaring up then easing back off again, then flaring~up again a bit further along the line. Same with how you have said it affects other bits of you.
DeedleDee wrote:Unless there's any evidence of inflammation (swollen joints, hands, feet etc or anything that may have shown up on a blood test) apparently naproxen won't help you. I'm not sure if that's right but that's certainly what I've been advised. I've also just been told by my consultant that co codamol doesn't help a lot for neuropathic type pain, so might not be suitable for a lot of us fibros - which is strange considering I've been taking it for years now and the only person who's mentioned that is my consultant. :crazy: maybe that's why I've been on it for years!!

Whilst Naproxen is known primarily as an NSAID, it does also work as a pain~killer. It does this by blocking the action of a substance in the body called cyclo-oxygenase (COX). Cyclo-oxygenase is involved in producing prostaglandins, in response to injury or certain diseases, such as arthritis. These prostaglandins cause pain, swelling and inflammation. Naproxen blocks the production of these prostaglandins and so is effective at relieving pain and inflammation.

There is info and advice across the boards, to see if there is anything relating to something you're wondering about, you can either use the Search function in the top right corner of each page, have a trawl thru the boards and see what there is, as well as ask about things. Hopefully you'll find some useful ideas/suggestions to try out :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Sound familiar?

Postby Bloomingbutterfly » Fri Feb 14, 2014 10:56 pm

Thanks for the replys. I think I may just go back to the doctors to see what's available. I also want to ask about possible physiotherapy or if they can refer me to some sort of exercise coach type thing to get a exercise programme suited for me.

I've also been referred to psychiatry for CBT for help with anxiety/depression, but read that it can also help with fibromyalgia patients.

I feel that it's possible I have had CFS pretty much all of my life because as a kid I would tire easily, get very run down easily and before a few years ago with getting flu jabs I was always had some sort of infection(throat or chest) and times before I got really ill I would be easily run down, I.e not coped with full time jobs or being on the go all the time. But of course when I mentioned this at general medicine the consultant said that it was just part of me, some people are more prone to that than others.

But they say in some research that trauma can cause fibromyalgia to which makes me think the mouth and throat infection I mentioned earlier could of been the start of it, as I had its or about 3weeks and it didn't help that the first doctor said it was a viral infection, two days later it was even worse, went back and was told a throat and mouth infection and had liquid antibiotics as swallowing was hard. What do you think?
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Re: Sound familiar?

Postby DeedleDee » Fri Feb 14, 2014 11:17 pm

hi fluppypuffy,

Intrigued by the naproxen thing so think I might ask about that at next appt - would love to get off co codamol.

Thanks for the info :-)
D xx

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Re: Sound familiar?

Postby denys » Fri Feb 14, 2014 11:27 pm

Hi and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave:
Denys

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Re: Sound familiar?

Postby Katieanne » Fri Feb 14, 2014 11:31 pm

Hi, I was diagnosed in May last year and am now on naproxen and amitriptyline. After reading all of your posts I realise that am lucky in that I am not crippled with pain and can still do most things. If I do too much I am achy and tired and really can't be bothered with anything. I hate feeling like this but know that I am lucky compared to most of you. I dread this getting worse but feel a fraud because I don't look ill. Will I get worse? Or have I just found a good level of pain control. Ps big valentines kisses to Garry - I know you will read this. I love you. Xx
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Re: Sound familiar?

Postby Bloomingbutterfly » Fri Feb 14, 2014 11:47 pm

Hey,

This recent flare up has started about 2 weeks ago, before then I would get aches and mild pains but would be bearable. But I've heard a lot of people go through flare ups and then just have general days, which to me is the bearable days, still ache and feel tired. But the flare ups feel like a battle all the time.

And at times I may wake up and think okay, this might be a better day but as soon as I start doing simple things like putting a washing on or tidying up or making the bed and then the pain starts, and at times I just want to cry coz I am in so much pain/discomfort and fed up.

Everyone is different, some people may have it only mildly and others severely.
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Re: Sound familiar?

Postby FluppyPuffy » Fri Feb 14, 2014 11:53 pm

Bloomingbutterfly, when you're asking about physio, you could also see if there is a CFS Clinic/Service you could be referred to. As part of the process when I was dx'd with CFS, I was automatically referred to the one covering where I live and was accepted for a course of 1~to~1 sessions to learn more about the condition, how it affected me personally, and how better to live with it. I had about 8 sessions which covered things like how to allow for fatigue when determining what I was going to do, and how long I was going to do it for, graded exercise approaches, how to manage the psychological impact of the condition, and a host of other little things that I felt would be helpful to me.

Prior to the sessions, I was continuing to do things at the previous rate I had managed preCFS dx, which was too much for me and started causing me additional problems. If I hadn't been able make use of the CFS Service, I could see what might happen to me as I'd gone thru something similar with FM a few years earlier.....total meltdown :oops: :oops: :oops: :oops:

There are also similar sessions run where the focus is on how to manage pain levels more effectively. Might be another one to add to the list of things to ask your GP about.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Sound familiar?

Postby Paula200 » Sat Feb 15, 2014 12:12 am

Hi all

I was offered CBT it was brilliant my specialist said it is one of the best treatments for fibro, sgojrens, lupus ect I have first two waiting on diagnoses for third but is not easy to fund. It made a huge difference to me I gave my confidence back, I feel I can stand my ground with out getting as emotional as I use to. Good luck it really helps xxxx
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Re: Sound familiar?

Postby Bloomingbutterfly » Sat Feb 15, 2014 4:04 pm

I've seen a few posts that have said that they have been referred to a rheumatologist? Is this common because I haven't been and not sure if I should request to be referred?
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Re: Sound familiar?

Postby DeedleDee » Sat Feb 15, 2014 4:12 pm

i was referred to a rheumatologist but she also deals with a lot of fibromyalgia patients. I've heard of others being referred to other specialists though. Might be worth asking. I had to have diagnosis confirmed by rheumatologist as doctor wanted to cover all bases so to speak.
D xx

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Re: Sound familiar?

Postby Smurfy » Sat Feb 15, 2014 8:49 pm

Hi and welcome :-D

I was finally diagnosed with Fibro after many many tests for other things, last May by a Rheumatologist. He has a good understanding of fibro and wants to see me every six months. I had a spinal fusion 20 years ago, resulting in a spinal stenosis, causing excruciating sciatica. They think this triggered the Fibro. I can relate to your pain!

Having tried Gabapentin with awful side effects for a year, I now take Naproxen in the day, co-codamol and amitriptyline for night pain. It doesn't take all pain away but this combo seems to be best at the moment. Different things work for different people, hopefully your GP will be able to guide you.

I havent worked out how to cope with down days and the fatigue, working 30 hours a week is a struggle but does take my mind of things!

Lots of luck xx
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Re: Sound familiar?

Postby FluppyPuffy » Sat Feb 15, 2014 11:46 pm

Bloomingbutterfly wrote:I've seen a few posts that have said that they have been referred to a rheumatologist? Is this common because I haven't been and not sure if I should request to be referred?

Quite often a GP will refer a patient on to a Rheumatologist to either dx what is affecting them, or to confirm the dx the GP has made. However, there are more and more GPs who are sending people for tests, scans, x~rays etc etc then making the dx themselves, just as your GP has.

If you feel seeing a Rheumatologist (or other specialist that deals with conditions like FM) would be helpful to you, then you will need to ask your GP about a referral. As things tend to vary area~by~area, the range of what a Rheumy can/will do can vary too. Some will just give/confirm dx, then send you off back into the care of your GP. Others seem to have a more involved approach, and may make suggestions about meds, treatments etc, want to see you at a follow~up appt or on a relatively regular basis for a while. It can be a bot hit and miss, so maybe trying to find some info about the Rheumy/specialist that you could be referred to might help you decide about a referal.
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Re: Sound familiar?

Postby Bloomingbutterfly » Sun Feb 16, 2014 5:24 pm

Well it wasn't my GP that made the diagnosis it was general medicine that I got referred to, he didn't seem too positive about fibromyalgia in the sense of he says that some people think it's a real condition and others didn't. That was it, he never said any more about it no suggestions or anything. I kinda left thinking now what.

And was only put on naproxen a few months ago coz I was saying that other painkillers weren't working as we'll.

That's why I think it would be good to be referred to someone with more knowledge and understanding of the condition.

X
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