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Fibromyalgia , EDS and Pain

klh_1987klh_1987 Member Posts: 8 Listener
HI, I need some help

I have recently been diagnosed with Fibro and my Hypermobility has been reclassified as EDS. I am in so much pain. I have been sent to a pain clinic but the clinic is a group therapy session. I am not interested in that I want to know what pain relief i can have. I am currently taking Amitriptaline but that isnt working at all. 

Can someone advise me? 

Thank you

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    Hi @klh_1987, how are you doing? It can come as a shock when a diagnosis changes and I'm sorry to hear you are in so much pain. Have you found that heat or ice helps at all?

    Have you spoken to your GP about more pain relief? They might be able to give you something stronger.

    Also, I'm tagging @ClaireSaul who is our amazing chronic pain adviser.

    You also might find Live Well With Pain a really useful resource. 
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  • klh_1987klh_1987 Member Posts: 8 Listener
    Thank you for your help. 
    I am in quite a bit of pain, struggled to even put my socks on this morning so i ended up wearing tights!! 

    My GP wanted me to wait until i have seen the pain team, but he doesn't know this is a group session, so i may have to ask him for some help too. 

    my hands are seizing up, I'm feeling dizzy and had a fall this morning and just feel blah! 

    Sorry to moan. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    You're not moaning at all @klh_1987, it sounds like things are really tough at the moment. How are you feeling after your fall?

    I hope you're able to have a relaxing evening.
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  • klh_1987klh_1987 Member Posts: 8 Listener
    I feel rubbish and bruised. I'm sat at home with  duvet on and just feel so yuck :(
  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    I'm sorry to hear that @klh_1987, do you have anything to keep your mind occupied when you are having a bad day?
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  • deb74deb74 Member Posts: 671 Pioneering
    Hi @klh_1987. I have fibromyalgia as well as other things my doctor referred me to a pain clinic which was group sessions. but I was able to phone the clinic and get an assessment over the phone and they sent me a booklet with advise on pain relief and relaxation. My doctor was not happy that I didn't attend the clinic in person but it wasn't just that I didn't want to go the clinic is a long way from where I live and I wouldn't be able to get there. I hope you are feeling better now. Like Chloe said it might help to try and keep your mind occupied.
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    Hello @klh_1987
    Apologies for taking so long to pick up on your message.......I had a particularly nasty fall myself and dislocated both shoulders and a hip. So....what I need to say first is that as someone with EDS I completely understand.  You are not moaning - my daughter tells me that I apologise too much for seeing myself as a nuisance, but sometimes it is difficult not to isn't it?

    I know that you said the pain clinic is a group session, but do you know who is running it?  Maybe you could speak to them in advance? When I went to a pain clinic I had to attend a 2 week inpatient group course before I could even be considered for help (in my case a spinal cord stimulator).  I was terrified and even more so when told I would have to be weaned off my opiates.  But it was worth going and I actually found a group of people who "got it"....I had never had that before.  The support we were able to offer each other was invaluable and there was no judgement.  

    Amitriptylline is commonly used with nerve pain, but there are other medications available that might give you more benefit - I can't advise you on specific drugs (we're not medical professionals)but your GP should be able to discuss with you. (https://www.nhs.uk/conditions/peripheral-neuropathy/treatment/)

    How are you feeling now?  Have you thought about joining the EDS community online? EDS UK has some great support groups - most have regional facebook groups that also meet up physically every couple of months.  My hubby and I have both found these really helpful.  (ehlers-danlos.org/support/support-groups/) There is also a regular magazine called Fragile Links 

    Let me know how you are doing.
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • brujah81brujah81 Member Posts: 56 Courageous
    I have been on Amitriptyline, Pregablin, Gabapentin. And also lots of Opiod pain killers. I am about to go onto LDN Low Dose Naltrexone which is quite new in the UK and hard to get prescribed from what i understand.. but it seems to be a good drug from all the people i have spoken to with Fibromyalgia EDS and ME in the States.

    Kelly x
  • smothy27smothy27 Member Posts: 1 Listener
    Hey sorry to jump on this post but it’s exactly what I’m feeling at the moment I got diagnosed with EDs about a year ago and am struggling I got sent to pain clinic as have chronic pain due to multiple dislocations a day and wearing splints 24/7 
    the chronic pain team wanted to take me off all meds as I’m only 25 and doesn’t think I’m old enough to be on theses type of meds and there words “ go get on with life as your only young” I found this so hard and thought I must be making such a thing of my pain and everyone must be getting annoyed.
    i spoke to my gp who has put me on gabapentin as she doesn’t believe I should be left without.
    i just feel like I never say that I’m in pay otherwise people will think I’m constantly moaning, but sometimes feel so alone because of the pain x
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