Bizarre pains even for fms-feel a freak

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Bizarre pains even for fms-feel a freak

Postby wobblycat » Tue Jul 01, 2014 11:50 am

Hi all hope you are as good as can be. Always follow the forum but not posted for ages. Sorry for long post but grateful for any comments. Last 5yrs have been a living hell. DXD with fms and sciatica. I only had 2 tender points on both thighs.Sciatica was caused by disc protrusion L5/S1pain in left leg, was excrutiating but no other pain elsewhere. NHS was useless, saw physios and 2back specialists no one agreeing.No help with pain relief.Finally offered surgeryas mri showed worsening signs.Sciatica cleared on its own after S
18moths.

Waited months for any help.Started getting pain and swelling in my left heel and ankleafter the sciatica had gone.Passed from pillar to post to a foot specialist. Senior reg offered surgery, but consultant said not necessary. Dxd with Haglunds deformity more months wasted. Last 6months got pain around my middle -ribs and upper abdomen.

Last 4months now got pain in right inner ankle really difficult to walk. Pain in outerindex finger and little fingerof left hand.Foot consultant passed me back to gp to refer me to rheumy as thinks something systemic is going on. Gp doesn't think I have fibro. Recent blood tests are largely negative.Now waiting months to see rheumy.

Starting to get pain across left arm at elbow and today feel burning pain around my head. Lost my career through muscle pain and stiffness. Have had counselling not on nhs, seena clinical psychologist but services keep shutting down. Just keep deteriorating and feel very distressed and frightened.Mods sorry cant paragraph and don't know why red lines show under words.Thank you for reading this.
Last edited by FluppyPuffy on Tue Jul 01, 2014 2:09 pm, edited 1 time in total.
Reason: Made paragraphs clearer, as well as twiddled with punctuation/grammar, for easier reading.
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Re: Bizarre pains even for fms-feel a freak

Postby u37mr » Tue Jul 01, 2014 1:07 pm

Hi wobblycat,

Am sorry to hear of what you're going through. Sounds like you're having a nightmare. You must have the patience of a saint putting up with all medics bandying you about. I would have lost the plot ages ago! Lol

In my experience, you really have to kick up a stink when this happens. Pester your gp and insist on seeing someone to help. Have you got private medical insurance? It might be worth looking into. I got seen within 3 weeks of my gp writing away and fortunately saw a lovely doctor who actually listened (unlike the jumped up patronising so n so I saw at the nhs pain clinic)

If your gp doesn't think you have fibro, what do they think you've got? They think this is an acceptable statement to just say that and not explain what you could have?!

I also lost my job because of this and feel like I'm deteriorating, pain keeps shifting and in the oddest of places!
I really hope you get your rheumy appointment soon and get some answers. Have you thought about trying physio or massage (gp can refer) or even just a spa day to treat yourself if you feel up to it (completely understand if not)

You are not alone, I feel exactly as you do and am determined not to let this stupid disorder beat me.

All the best and gentle hugs xx
Last edited by FluppyPuffy on Tue Jul 01, 2014 2:10 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Bizarre pains even for fms-feel a freak

Postby FluppyPuffy » Tue Jul 01, 2014 2:41 pm

wobblycat wrote:Mods sorry cant paragraph and don't know why red lines show under words.Thank you for reading this.

I've sorted the paragraphs out to make things a bit easier to read. I can only guess that the red lines you have mentioned relate to possible spelling and grammatical errors that a spell checker in your browser has picked up.

Have you tried a change of approach with your GP??? Sometimes going in with a more direct approach and armed with info from reputable sources, and taking more of a lead with the appt can bring about a a more pro~active response from who you see. If you can put together a condensed, yet detailed timeline of what has occurred during your various appts etc, and list all the things you need to know and why, you might get someone spurred into action. If necessary, become a regular visitor and keep seeing different GPs until you find a more helpful one.

the only other solution I can suggest is seeing if there is a more understanding and helpful surgery in your area, and looking into what needs to be done to transfer to them. Maybe give them a call and ask if they have patients registered with them that have FM and/or other similar conditions. If they do, see if there is a particular GP that deals with these patients, or has an interest in such conditions.

As u37mr has suggested, seeing someone privately may be another possibility, if you have insurance or can cover the cost of appts. Whilst having the support of a GP may not be necessary to see someone privately, having yours onside can have benefits, esp when it comes to suggests about treatments etc that may be made by a doc you have seen privately.
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: Bizarre pains even for fms-feel a freak

Postby wobblycat » Tue Jul 01, 2014 4:41 pm

HI Flupand u37mrthanks for repliesand sorting my computerproblems out.My gp surgeryis the only one local to me and are useless.Cant get appointmentsfor weeksand often canonlyget telephone consultation.I live on the so calledafluent south coast but been unable toaccess a regularpain clinic,acupuncture.counsellingon the nhsI feel like naming and shamingthe two nhstrusts I have dealt withand lost allhope of getting any help.I haven't got private insurance and I don't thinkmy o/h would supportme going private but am getting so desperatewith these crazy pains and rigidity.Thank you for your helpwas just wondering if others had suchweird symptons
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Re: Bizarre pains even for fms-feel a freak

Postby FluppyPuffy » Tue Jul 01, 2014 5:14 pm

The symptoms you described are part of what some of us experience at some point along the way. I can understand why they would make you feel so peculiar as there is no pattern or regularity to them. With you experiencing these problems, and with you having an upcoming rheumy appt, it might be worth keeping a note or diary~type record of things that affect you, incl time and where it happened, how long it lasted, how long it took for you start to feel better after it, and anything else that you think is relevant. It can all help with painting that overall picture of how things are for you, and might be of help to the rheumy in trying to determine what is behind things.
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Re: Bizarre pains even for fms-feel a freak

Postby Diane64 » Wed Jul 02, 2014 2:13 pm

Sorry to read you are having a hard time right now, these things you are suffering from are more or less pretty normal for fibro..whatever normal is!! I would write down everything that gives you problems and when you get your appointment hand it to them instead of trying to explain and forgetting a lot of it.

Don't give up hope of trying to get some sort of diagnosis and in turn get meds that might alleviate some of your ailments. with fibro 2 days are usually never the same with something weird but not wonderful popping up..
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