Dealing with chronic pain
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arthritis and now fibromyalgia

jjdd70jjdd70 Member Posts: 62 Connected
edited May 2019 in Dealing with chronic pain
ive had   

osteoarthritis

for many years due to a nasty fall but over the last 2 years all over my body was totally acheing,and physio kept saying its your arthritis pain doing this but when it gets to the point where a bit of walking causes a burning sensation to my hips and thighs painful so after 2 years.off seeing physio for exercises etch specialist was brought in to see me at gp and he asked questions and said he wonted to do some tests.he only pressed on certain parts of the body like legs neck shoulders i need to be peeled of the ceiling.it was so painful and he told me it was fibromyalgia i was suffering from, now waiting for gp appointment to see what can be done 

Replies

  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Hi @jjdd70, I imagine this was a big shock! How are you feeling about the change in diagnosis? I hope a correct diagnosis will prompt better treatment for yourself and hopefully reduce your pain levels! Here is a list of conversations that have been happening on the community about fibromyalgia. Please do let us know how your GP appointment goes :)
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  • jjdd70jjdd70 Member Posts: 62 Connected
    he has put me on amitriptyline but don't like them make me feel light headed and dry mouth so going to tell him dont like them at all
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Sorry you are getting side effects from the medication! I'm not a medical professional so can only go on my own experiences. I take amitriptyline so can relate to that, it also makes me very drowsy at times! I found the side effects eased after taking it for a month as it has to build up in your system. How long have you been taking it? If you do continue having unpleasant side effects then you should be able to get it changed by your GP :) 
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  • jw0957jw0957 Member Posts: 48 Connected
    jjdd70
    oh my l so relate to this!! I have had fibromyalgia for many years and after a number of falls and several surgical procedures l was diagnosed with osteoarthritis in multiple joints. My first steps on getting out of bed on a morning are excruciating to say the least and doesn’t get any better as the days wear on. I’m 62 but feel 92 a fair portion of the time. I feel deeply for you having to deal with it all 😖😢
  • jjdd70jjdd70 Member Posts: 62 Connected
    omg i feel like that since monday honestly couldn't get out of bed my fingers on my left hand were so stiff excutritiang pain,
    honestly couldn't get out of bed same today forced myself hate this feeling i had 1 day off last week then back to been from feeling 49yr old to 99 yr old, its awful,and in between this trying to get my husbands pip sorted hes been under mental health for 6 months and he hates been around 2 or more people gets really panicky ,I feel i dont have the enargy to deal with the === they are given they said paper based now the wont face to face he can't do that, struggles with overwhelming stress 


  • zakbloodzakblood Member Posts: 419 Pioneering
    amitriptyline is a wonder drug, works well for me, but does have the side effects like most, for me i take them at night time only so sleep somewhat slightly better and also when i get a migraine etc or the onset of one and if i'm getting more stressed than normal, but works with others i'm also on, but know also a few others who they didn't works so well with, aged 52 next, they have helped me, but at first it was something odd to get used to, so seems to take a while at first to get into the system and work, but once in, and after your body gets used to them, mine were ok, but my girlfriends mum can't, makes her sick and also too dopey, so falls asleep to often on them, so came off, so good luck and go back and tell the Doctor and let them know your feelings, as there's others to try and see if they work for you
  • ladygonegagaladygonegaga Member Posts: 11 Courageous
    Hi, I have MS and fibromyalgia and I am on amitriptyline. I take it at night about 8pm, it helps me sleep, I read once that you need to take it 12 hours before you want to get up, this helps stop the dopey feeling. The dry mouth will ease up when you have got them in your system but it is 1 of the side effects.
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Thank you for this @ladygonegaga! This maybe what I am doing wrong... I tend to take mine about an hour before I go to bed, yet this isn't always 12 hours before I need to get up! I'll be trying that tonight!
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  • zakbloodzakblood Member Posts: 419 Pioneering
    edited June 2019
    sometimes for me, i ignore what the packet says and do as my body tells it, and tell the doctor the same, and she's fine most of the time, as she says as long as it works for you, she happy, so i do, as it says on mine, take when needed, or before changed said take as directed lol, then it changed to take 1 to 3 per night, to now take when needed
  • jjdd70jjdd70 Member Posts: 62 Connected
    hi all been again to gp he's put me on gabapentin 300mg 3 a day
    also got this letter from gp 
    Im on standard and standard at moment on pip do i tell them about this cause i feel it wouldn't make any difference they problem still say with a aid i can cook a meal lol
  • zakbloodzakblood Member Posts: 419 Pioneering
    i was just told today in a letter from the test center i failed at, that and i'll quote it " the medical advisor states that no one disputes your medical conditions, how a WCA assesses how you can bla bla bla" then goes on to say "our professional trained health care disabled analyst's" lol "in terms of medical evidence you provided, the medical advisor explains that the health care professional is not required to review or read anything or everything presented" end quote, or that's what i got today when i made a formal complaint against the nurse who did me, 3 page letter paying me lip service and how they see the law, didn't explain or even comment on my being described as a women in one part then a man in the other, so yes very factual, so good look but get advice first on what to do
  • jjdd70jjdd70 Member Posts: 62 Connected
    Hi all in December i got my papers from pip for renewal and i filed them inland sent them off with my evidence and today without having a face to face i received me decision, and they have given me till 2024 standard care standard mobility,I did tell them my OT gave me a perching stool to try to help with cooking, but its just not working for me becuase using the stool next to the cooker its too hot to sit there to cook, and with fibromyalgia and chronic pain its not safe to do this description but they still awarded me 2 points for it.Im thinking of contacting them for a reconsideration for the cooking part 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Hi @jjdd70 and thank you for updating us. Great new about your decision! You are able to appeal.

    However, they would have to review the whole award and you might not be given the points you need to get standard in both again. How many points do you have for daily living? If you aren't close to the enhanced rate then it wouldn't make a difference to the award you would receive.

    Please do let us know how you get on and if you need anymore information. :)
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