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The UKFibromyalgia Forums • View topic - Newly diagnosed and miserable



Newly diagnosed and miserable

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

Moderators: perseus, *Lisa*, FluppyPuffy

Newly diagnosed and miserable

Postby hollytehmoomin » Fri Nov 14, 2014 7:04 pm

Hi there,
My name's Holly and I'm 23. After struggling with joint pain since primary school I have been diagnosed with fibromyalgia and arthritis. Now I knew what too expect as my mum has it but I am really struggling. I suffer with other conditions such as PCOS and depression/stress/anxiety.

Recently I have been feeling very down, crying more abs just being generally miserable. My partner doesn't quite understand, he thinks it just like a sore leg, or just a headache. I don't quite know how to make him understand that its constant pain and I'm not being lazy.

I feel pathetic half of the time and I'm fed up of feeling like this. I'm glad I've finally got answers but then a long with everything else I have to live with this for the rest of my life and at the moment I can't see how.

Sorry about the rant/moan but it feels better doing it a place where someone understands.

Holly xx
Last edited by FluppyPuffy on Mon Nov 17, 2014 9:50 pm, edited 1 time in total.
Reason: Made paragraphs a little clearer for easier reading.
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Re: Newly diagnosed and miserable

Postby smcachoward » Fri Nov 14, 2014 7:25 pm

Know how you feel I have arthritis and have recently been diagnosed with fibromyalgia. Get really stressed about being
Tied all the time. Also bored of being in pain all the time.
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Re: Newly diagnosed and miserable

Postby natmac73 » Fri Nov 14, 2014 7:32 pm

I can sympathise with you both.....I've just been diagnosed and with CFS in march, I also have Arthritis in my neck amongst other things! I just feel so guilty for my uselessness! And For my family. ... The pain is the worst to cope with because it just seems to be endless! I'm hoping the gabepentine kicks in soon! I have lots of hospital appointments coming up ..hope they can help! x
Last edited by natmac73 on Fri Nov 14, 2014 7:34 pm, edited 1 time in total.
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Re: Newly diagnosed and miserable

Postby hazely » Fri Nov 14, 2014 7:34 pm

show him the spoon theory its in the main apart of the forum I think
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Re: Newly diagnosed and miserable

Postby jrules1fair » Fri Nov 14, 2014 9:58 pm

Hi i know how you feel. I have longstanding osteoarthris and gradually it has spread to several joints after having several knee ops including both knees being partial replacements. I was diagnosed with chronic pain syndrome/fibromyalgia about two to three months ago i am currently experiencing a flare up at the moment which has slowly increased in intensity over the last couple of weeks so i am not in a good place at the moment
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Re: Newly diagnosed and miserable

Postby Angie Baby » Sat Nov 15, 2014 7:34 am

Hello everybody, I've suffered from Fibromyalgia and arthritis since I had an accident at work in 2008. I've suffered a prolapsed disc. This happened in March . It took me a lot of going back to the doctors and complaing about how painful my back was then and still is today. I had a mri scan in August that year which confirmed that I did have a prolapsed disc.

I went to see a specialist in Hull's Royal Infirmary and Mr Spink said that he could operate and ease the pain. I've had 2 spinal operations and I'm still in constant and excruciating pain. I have to use a wheelchair because I cannot manage to walk without excruciating pain. I've had 2 sleep downstairs and had a wet room put in downstairs. I'm on 100mg morphine patches and strong painkillers which includes taking 150 mg of amitriptyline at night to help me to sleep. As you can see it doesn't work for me. Lol!

I've had cortisone injections into both knee's and my left shoulder quite a few times. I still don't get a lot of relief. My injection into my shoulder was early November and I cannot have another injection until February next year. I'm supposed to be pain free until then. Not a chance all my joints are inflamed and very very painful.

I'm sorry that I'm using this forum as a sounding board. It's because I know that when I try to say how bad things are to me. Their's someone who knows exactly how I'm feeling. :needhug: :grouphug: :hugs: :hugs: I wish everyone a pain free day. Or at least a more bearable day.:-)
Last edited by FluppyPuffy on Mon Nov 17, 2014 9:52 pm, edited 1 time in total.
Reason: Split into clearer paragraphs for easier reading.
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Re: Newly diagnosed and miserable

Postby Lilmagic » Sat Nov 15, 2014 12:54 pm

Ok. For the second time - as it dumped my original post!

Hi Holly,

I'll put this into brief, having written it all in full and lost it!
So please excuse the bluntness and add the niceties yourself xx

Ok, see GP for double appointment and fer right medication. If partner is negative and disbelieving then dump him! Ask for counselling, it helps to talk! Take life one day at a time and don't look at the bigger picture. The big picture is scary, little bits are not so bad. Look around you, there is always someone worse off than you, so try to be grateful for where you always re in relation to them rather than looking always ret the negativity of the illness.

I'm fortunate to have very supportive family and friends, but without them it would be much harder, so distance yourself from anyone that is not understanding and supportive.

I wish you luck and love in your life. Remember, one day at a time! Xxx
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Re: Newly diagnosed and miserable

Postby Lollyd » Mon Nov 17, 2014 9:29 pm

Hi

I am 43 and was originally diagnosed with FM about 2 yrs ago, to be honest I didn't really believe in FM and just got on with life. I was re referred to a Rheumatologist last month as I am in so much pain in my joints etc and have been now for the last 6 months. He re confirmed it is the FM. I also have osteoarthritis in my spine and both my knees and have been told I need a right knee replacement.

I have no choice financially but to work full time ( I am a midwife) I also have a family, 2 dogs, 3 horses, chickens and a sheep. Atm I am just at the end of my tether. I am soooo tired, in bed by 9pm and up again at 6am, do not sleep well at all. In constant pain in most of my joints, my hands don't work properly any more, was making blinds for my daughter's bedroom at the weekend and struggled to sew, pin and fit the blinds.

I feel so sad all the time as I think my life has ended, I cannot ride my horse, am struggling to muck out and lift things I used to, my body just seems to let me down and I feel I am putting extra pressure on my partner. I don't want to go out, I have put weight on ( I used to do a lot of exercise, the gym, running, cycling, riding but atm cannot do anything for the pain) I cant walk my dogs far at all as just get exhausted with the pain.

I really struggle with meds, I am really sensitive to most drugs either pain relief or gabapentin types and amytriptiline type. Just been prescribed Duloxetine but even reading the side effects makes me dizzy! I have to continue to function and know that if I take this I wont be able to.

I had a back massage on Sat, which was lush and relived me for about an hour after but now just feel as bad as before. I just don't know what to do. Not sure if my family really understand. I don't know what to do and really hate myself and my body for how I feel. :cry: :cry: :cry: :cry: :cry:
Last edited by FluppyPuffy on Mon Nov 17, 2014 9:49 pm, edited 1 time in total.
Reason: Split larger paragraph into smaller ones for easier reading.
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Re: Newly diagnosed and miserable

Postby Gingermama » Wed Nov 19, 2014 12:33 am

I literally have just been diagnosed today! Im feeling pretty shell shocked despite the fact that I had my suspicions that this was what was wrong with me. For the last 4 years I have had so many issues, tests and on going issues. I had SPD when I was pregnant with my youngest (4years old in dec) which never really went away but then had a fall when he was 15months which jarred my already sore hips. After nearly a year of pain I saw the physios that dealt with me during pregnancy who said I have hyper mobile joints and an unstable pelvis. I also have an underactive thyroid following the birth of my first child 7 years ago. I also developed pernicious anaemia when pregnant with my youngest! My body does not like being pregnant! I had post natal depression and have managed to get thru all of that only to hit a brick wall with constant pain and fatigue which has been ongoing probably since I fell over when I was carrying the baby! I'm glad I can finally say to people "this is me, I have fm" as I have felt people thought I was crazy/ lazy/ hypochondriac etc. However to be told I have a life long disability when I can still walk, go to work and have hobbies, I feel like a fraud. I know I'm not but it also terrifies me what the future may hold for me... Will I lose the abilities I still have? Am I going to just get progressively worse? How do I get practical support with the things I can't do (housework being the main thing). I guess I feel like a failure for putting this on my husband and 2 kids, as Mum I should be the one looking after everyone, keeping the house and family together but I just can't! By the time I finish my morning at work I can barely get off the sofa and feel like a zombie. I'm constantly feeling harassed by the everyday chores I need to get done, even just doing the school run knocks me out and it's awful! I'm planning on going to uni next year and just feel terrified I won't cope! I just hope the gabapentin the GP prescribed will help and rheumatologist will give me some helpful advice when I see them!
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Re: Newly diagnosed and miserable

Postby hollytehmoomin » Thu Nov 27, 2014 9:54 pm

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