All new members

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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All new members

Postby LindyM66 » Wed Aug 09, 2017 9:34 am

Hi Everyone,

Apologies for the late welcome to some of you - and a "group hello" from me - had a brutal few weeks!
I hope we can all share our thoughts, coping strategies, mumps and grumps - the whole shabang.

Much Love to you All
Lindy x
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Re: All new members

Postby Firefly1508 » Sat Sep 02, 2017 12:51 pm

Hello, I am a new member, living in Norwich, Norfok,feeling isolated. So if theres anyone out there who wants to connect please email me (taken of email address due to security reasons as we are on an open forum. Please contact member via personal message for email details... Lisa...Admin & Mod)

Thanks.
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Re: All new members

Postby LindyM66 » Wed Sep 13, 2017 7:52 am

Hi Firefly,

Fibromyalgia really can be isolating. I've been off work for over 5 months, and hardly seen anyone, apart from my husband, and a couple of friends.
I don't know why, but many people just seem to "disappear". I guess it's difficult for them to understand how our lifes are impacted upon by FM. It's as if we get kicked to the kerb, because we can't do what we used to do.
Feel free to message me anytime, as the forum can be pretty quiet.
Apologies for the delay in responding to your post.

Much Love
Lindy x
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Re: All new members

Postby MrsGardner » Thu Feb 01, 2018 4:30 pm

Hi,I'm new to the forum,been keeping myself to myself for too long and decided it's now time to start connecting with people who are suffering too.
I was diagnosed in 2015 and I have found also that people start to stop visiting or calling as often as they did,probably because of my concentration or the fact I'm not as up beat as I used to be.
My partner is my main carer (I used to be a care worker before fibro kicked in so have gone from being the carer to being the service user and that has absolutely destroyed me)
Has anybody else developed a hypersensitivity to medication too?
I can only tolerate low doses so am struggling because I can't have higher doses as it make me worse :-?
Also have severe anxiety issues with depression on top,nice meeting you :-)
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Re: All new members

Postby LindyM66 » Fri Feb 02, 2018 12:58 pm

Hi Mrs G

Nice to "meet" you :-)

I'm very, very fortunate that I can tolerate the medication I'm on - as its fairly high dosages. For now, it seems to be keeping me on an even keel, and letting me function to a degree.
As my post above said, I was off work last year for 6 months. Started back in October. I was a nurse for many years, and now work in the education side of the care field.
Being off sick, I learned alot about myself and my little friend FM. I now place self caring at the top of my list. Learned to pace myself and I don't allow myself to get stressed over anything.
I thought I was "done in" last year. Was a very horrible time, lots of GP & Hospital visits - medics were thinking " is this MS rather than FM". My body was gubbed - for want of a better word. Severe pain all over, my speech was slurred and I stammered, problems swallowing, and my memory was shot to pieces. Like you, my husband had to assist me to shower/dress, and even had to wipe my ass! Jeezo! And I used a crutch for support. It wasn't nice.
However, the difference that an increase in medication made, turned me into a new person. I have also started taking my dogs for short walks - I really missed doing this! And my husband bought an exercise bike in the January sales - so I've been doing a VERY slow 5 mins a day. I still use heat pads - especially to sit on, as I get painful butt cheeks! I started taking B complex with B12 and I kid you not, there is a really marked difference to the fatigue.
Peoole don't realise how FM impacts on our lives. It's completely debilitating and affects every aspect of our lifes.
I've learned, and continue to learn, how to "work alongside the FM" as I know and accept (now), it's not going to disappear.
I take each day as it comes, and go with the flow. It's all I can do.

Much Love to you Mrs G
Lindy x
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Re: All new members

Postby MrsGardner » Mon Feb 05, 2018 11:36 am

I'm so glad to see I'm not alone in feeling like I have had a stroke with the slurring n mind fog,it's horrible.
I've got crutches here for when my hips and knees hurt but I can't use them,they hurt my arms and shoulders too much. I wish they worked for me.
Another few things I worry about is that I keep having weird moments,usually in the night where my heart races and I feel dizzy and sick and feel shaky and have to lie down with a fan on me to try and cool me down,always got the fan on in bedroom anyway as I'm always feeling hot but those odd moments really concern me
Been to docs about them many times but not getting anywhere just giving bloods,first time came back had to redo thyroid test and second one said blood sugar count was 6,I have gained a lot of weight and doc said it's due to my meds
I also retain water loads and get chest pains now and then but I am so fed up with getting myself motivated as I have anxiety too,to go down the docs for answers or help and just being told to book in for blood tests and see what they say and don't get answers
Even though I take zapain I still have serious back of neck pain/ headaches too,doesn't make sense lol
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Re: All new members

Postby LindyM66 » Tue Feb 06, 2018 5:30 am

Hi Mrs G

You're most definitely not alone.
I used to take Zapain, but it stopped working for me. That was before I was formally diagnosed.
I can relate to the dizziness, heart racing, sweats - I too, had a fan at my bedside and in the livingroom. I'm also at that sensitive age that ladies experience - blooming menopause! I couldn't work out if my symptoms were due to that, or the FM.
The breastbone pain, could be costochondritis. It is absolutely brutal! The pain spreads to your ribcage. I used a hot water bottle to ease that - it was the only thing that eased it. Heat, is very much my friend.
Oh the lovely cankles I have, due to water retention! Toes like chipolata sausages - most attractive!
I would say, don't let your GP palm you off. Mines did for a long time - everything was either my age (51), or being overweight. I kept going back. Probably drove him imsane, but he eventually starting listening to me and referred me to the appropriate specialists. If you feel the meds aren't helping, go back and rattle his cage a bit.
I always say, if people could live one day, in the shoes of a person with FM - they would think differently.

Keep on, keeping on, Mrs G
Much Love
Lindy x
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Re: All new members

Postby *Lisa* » Tue Feb 06, 2018 11:35 am

MrsGardner wrote:I'm so glad to see I'm not alone in feeling like I have had a stroke with the slurring n mind fog,it's horrible.

Another few things I worry about is that I keep having weird moments,usually in the night where my heart races and I feel dizzy and sick and feel shaky and have to lie down with a fan on me to try and cool me down,always got the fan on in bedroom anyway as I'm always feeling hot but those odd moments really concern me
Been to docs about them many times but not getting anywhere just giving bloods,first time came back had to redo thyroid test and second one said blood sugar count was 6,I have gained a lot of weight and doc said it's due to my meds
I also retain water loads and get chest pains now and then but I am so fed up with getting myself motivated as I have anxiety too,to go down the docs for answers or help and just being told to book in for blood tests and see what they say and don't get answers


Hi, just wondering if you have had your hormones tested? Obviously I'm unsure of your age but just something else to think of? I Have very similar symptoms and been told I'm in early menopause. The weight gain, bloating, feeling hot, fast heart beats and heightened anxiety are all symptoms and ones I have. As I said just a thought...

The problem having fibro is the symptoms mimick that if many other illnesses and conditions and it's very hard sometimes to distinguish what's what.
As a Public Moderator & Admin 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...Lisa
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Re: All new members

Postby MrsGardner » Fri Feb 09, 2018 1:59 pm

*Lisa* wrote:
MrsGardner wrote:I'm so glad to see I'm not alone in feeling like I have had a stroke with the slurring n mind fog,it's horrible.

Another few things I worry about is that I keep having weird moments,usually in the night where my heart races and I feel dizzy and sick and feel shaky and have to lie down with a fan on me to try and cool me down,always got the fan on in bedroom anyway as I'm always feeling hot but those odd moments really concern me
Been to docs about them many times but not getting anywhere just giving bloods,first time came back had to redo thyroid test and second one said blood sugar count was 6,I have gained a lot of weight and doc said it's due to my meds
I also retain water loads and get chest pains now and then but I am so fed up with getting myself motivated as I have anxiety too,to go down the docs for answers or help and just being told to book in for blood tests and see what they say and don't get answers


Hi, just wondering if you have had your hormones tested? Obviously I'm unsure of your age but just something else to think of? I Have very similar symptoms and been told I'm in early menopause. The weight gain, bloating, feeling hot, fast heart beats and heightened anxiety are all symptoms and ones I have. As I said just a thought...

The problem having fibro is the symptoms mimick that if many other illnesses and conditions and it's very hard sometimes to distinguish what's what.

Hiya,I'm 42,I've had full bloods done and fasting bloods and nothing about early menopause was found
My mother started her menopause early so I mentioned it to the doctor so she did a blood test which included menopause test and it came out fine
I get confused because when I see the nurse and describe hot flushes etc she says it could be my age and that's all,I've been having the fluttering in my chest and feeling hot for about the last 18months,my bloods come back fine
First bloods said I had to redo my thyroid test then it came back ok and my fasting glucose came back as 6 but nurse said that is ok,I am at a loss as that's the top of the normal blood sugar level
Only thing they say about my weird symptoms is to stop my meds for 10 days and try different ones,even tho I only have low doses they do the job and if I forget my meds one day I know it because the pains worsen,I've tried all the usual meds and couldn't tolerate high doses so all I have now is naproxen,omeprazole,mertazapine,amitriptyline and zapain but can only tolerate one zapain at a time
MrsGardner
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Re: All new members

Postby MrsGardner » Wed Feb 14, 2018 12:11 pm

LindyM66 wrote:Hi Mrs G

You're most definitely not alone.
I used to take Zapain, but it stopped working for me. That was before I was formally diagnosed.
I can relate to the dizziness, heart racing, sweats - I too, had a fan at my bedside and in the livingroom. I'm also at that sensitive age that ladies experience - blooming menopause! I couldn't work out if my symptoms were due to that, or the FM.
The breastbone pain, could be costochondritis. It is absolutely brutal! The pain spreads to your ribcage. I used a hot water bottle to ease that - it was the only thing that eased it. Heat, is very much my friend.
Oh the lovely cankles I have, due to water retention! Toes like chipolata sausages - most attractive!
I would say, don't let your GP palm you off. Mines did for a long time - everything was either my age (51), or being overweight. I kept going back. Probably drove him imsane, but he eventually starting listening to me and referred me to the appropriate specialists. If you feel the meds aren't helping, go back and rattle his cage a bit.
I always say, if people could live one day, in the shoes of a person with FM - they would think differently.

Keep on, keeping on, Mrs G
Much Love
Lindy x

Hi Lindy :) my doc referred me to mental health team again and weight management specialist in July last year,still waiting,did see a psych but after telling her I have days I can't leave the house and missed a sitting she wouldn't reply to my texts to reschedule another appointment so I have had to be re referred.
Down at my surgery too u are not guaranteed to see the same doctor especially if it is for an urgent appointment so u have to make a week before phone call to see if your preferred doctor is available a week after and last minute u get told while waiting in the waiting room that u have to see someone else who doesn't understand sends me into turmoil
My preferred doc is lovely and helpful whereas the young locum doc is a bit of a cow who stops me in my tracks to deal with one issue to be helped on that day
Was supposed to been referred to the pain clinic when I first moved to this doctors surgery but I havnt been able to get an appointment with that doctor since as he is in demand.
Just don't know what to do any more,change surgery possibly? Then again I would have to go through all the mess I have now
Something I have to think about when I'm in a less anxious state if I remember lol x
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