Fibromyalgia

Mandy
Mandy Member Posts: 7
edited 21. Sep 2021, 08:38 in Say Hello

Hi everyone I was recently diagnosed after a long time of doctors not taking me seriously, but now I'm diagnosed there is no help they have just left me to get on with it.i feel let down and depressed.in pain every day and night and no light at the end of the tunnel

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Comments

  • Chris_R
    Chris_R Moderator Posts: 490
    edited 14. May 2021, 18:12

    Hi@Mandy

    Welcome to the online community great to see you posting.

    Recently being diagnosed with fibromyalgia can be very daunting and make you feel scared.We are here to try and help and understand your situation and work with you to get a better understanding of your diagnosis.Has you GP given you any medication for pain relief? you didnt say.

    Here are a few links to help you.

    Fibromyalgia | Causes, symptoms, treatment | Versus Arthritis

    Managing your pain | Treatments and self-help (versusarthritis.org)

    Arthritis and depression: what you can do about it (versusarthritis.org)

    Hope these links help you in some way.Meanwhile please got to our forums and talk to people on there all friendly and understanding as we all suffer from various forms of arthritis and pain.

    All the best Christine

  • Mandy
    Mandy Member Posts: 7

    Yes I have codeine for pain ,but it doesn't work.

  • Mike1
    Mike1 Member Posts: 1,992

    I have all the symptoms of firbo on top of my OA and everything else, my GP said that as there was no definitive test for it and as he would only prescribe morphine, which I am on already, he would not investigate it further; he even said "after all it is just another label for you".

  • Mini
    Mini Member Posts: 33

    I to have Fibromalgia in tears this morning as pain is so bad I have come off my medication Duloxatine as makes me so 4gettfull and like im in a daze all the time Im waiting for spinal surgery been waiting now 24 weeks they say its a 15 month wait The burning in my joints is so painful on flare ups but I just cant be on medication that makes me feel so awful just doesnt agree with me

    Im wondering weather 2 give up my aqua aerobics class I do 2 a week 4 time being till after my surgery abd just walk the pool instead as not sure if its 2 much on my spine

    Trouble is no one seems to give u a plan at hospital 2 follow while your waiting 4 surgery on whats not good 2 do and whats right 2 do

    Im struggling with my stairs as crawling uo them im trying to find somewhere 2 live on ground level

    I can honestly I have never felt so low in my life I cant even keep a relationship like I am I hate myself 4 ending up like this falling out of a moving car has ruined my life like this having both knees replaced and hip abd spinal stenosis prolapsed disc I just feel like I want my life over im fed up waiting 4 my ops I feel 4 u all having pain as its awful 🤗 enjoy ur day 🥰

  • Mandy
    Mandy Member Posts: 7

    I think these doctors need to be kinder,more understanding wouldn't go amiss,makes me so angry .

  • Mandy
    Mandy Member Posts: 7


  • Jona
    Jona Member Posts: 393

    Hi Mandy,

    Some doctors recognise fybro some don’t like Mike said it’s a label. They don’t know what’s wrong and don’t have the finances within the nhs govt guidelines to find out I’ve been appalled by my treatment 9 years ago they said fybro and I’ve fought bitterly since then and X-rays have shown osteoarthritis in nearly every bone in my body plus a skin condition I’m also autoimmune and have iron deficiency with high inflammation markers felt dreadful for years but all I got was oh it’s not that bad well I said it is that bad and until you suffer it then don’t comment needless to say I’m non compliant or a serial attender I’ve even been called hysterical a bone spur in my spine pushes on a nerve I couldn’t raise my right arm seen by a dr who was 6 months away from qualifying and insulted so I was calm told him straight what I thought and left (non compliant) I’m angry, hurt and humiliated but now I won’t go near one, one even yawned when I was explaining my pain guess he read front page of my notes fibromyalgia

    I hope you find an understanding doctor and get the help you deserve take care

    love Jona 💐💐

  • Mandy
    Mandy Member Posts: 7

    Thankyou for understanding,your very kind.

  • Jona
    Jona Member Posts: 393

    Just look after yourself and be kind to you 😊💐

  • Tracie
    Tracie Member Posts: 57

    Hi

    I saw a consultant last year he tested different places pressure points on my body all were painful . He explained if they were tender n the way I have been feeling with exhaustion it was fibromyalgia. Fibromyalgia goes hand in hand with oestoatheritis. He was very nice gave me a leaflet to explain. And recommended physio keep taking drugs from dr. I think def be kind to yourself n if you are tired rest dont feel bad cause morrow you can do a little exercise. Def helps take care tracie x

  • Ltrus81
    Ltrus81 Member Posts: 3

    Hi Mandy,

    I have fibromyalgia as well as osteoarthritis. I take 40Mg of amitriptyline, there are a number of drugs in the same family as amitriptyline I would definitely push for something, it’s made a huge difference to the sleep I get but I have to say it doesn’t help the pain.

    For the pain have 2 weekly acupuncture and cupping treatments I also have a tens machine which has a fibromyalgia setting so it runs for a lot longer than other setting and heat always helps I have a wheat bag and a hot water bottle I can wrap around my back.

  • Rosyrojo
    Rosyrojo Member Posts: 1
    edited 18. Jan 2022, 19:16

    I was diagnosed Fm over 17 years ago. Soon followed by Rh. ARthritis. I take no prescription drugs for either condition. Have had adverse affect from prescriptions in past. SElf care, determination and nutritional guidance -not avail on NHS. For FM- pacing techniques essential. Learn to recognise onset of fatigue. If unable to cease activity/work at that moment .. rest up asap. Psychologically tell yourself ‘ “I am deserving of a break’, or. I’m doing little/nothing.. I’m on holiday.””(Even if you are not!!).

    I take high dose turmeric capsules (with other ingredients) called {xxx}* . For FM I find high dose magnesium.. magnesium citrate/Elemental Mag. {xxx}* I have taken organic Chlorella 2tabs 500mg ea meal for over 20 years. Since then my iron levels have remained normal. And only had 1 virus during that time.

    Med `herbalist sent test to Germany for “leaky gut syndrome’ over 9yrs ago. Confirmed leaky gut syndrome , ie: good gut bacteria non-existent, bad bacteria over high limit. ADvised gluten free diet and many different baccilus capsules over 4 months. Then retested and correct level of glut bacteria confirmed. Remained gluten free ever since. Much research available on leaky-gut sysndrom+ associated with Rh; Arhritis and FM. Much associated with gluten.

    Never drink alcohol or smoke. Exercise- gentle walks when energy permits. Otherwise choose some of “Versus ARthtitis”home videos to exercise with to support muscle joint flexibility/strength. I only see Consultant Rheumatologist twice a year. Insist on copy of blood test and show /send to my Medical Herbalist. All private treatment and costly. Sad for those on limited income. Sadly for people such as us , NHS has become No Hope Service.. due to lack of research into NON-drug remedies and very little knowledge/guidance on diet/nutrition. Self reliance essential but really hard work! Blessings and good luck.!

    *Edited to remove product names. Anna (Mod)

  • Anna
    Anna Moderator Posts: 591
    edited 18. Jan 2022, 19:19

    Hello @Rosyrojo and welcome to the online community,

    Thank you for joining in and telling us of your experiences with complementary treatments and medicine to help deal with your FM and arthritis. I also use the Versus Arthritis exercise videos and can highly recommend them to help keep flexible and reduce pain. I agree that self-care is so important too - well done for embracing that.

    It's interesting to read of the complementary meds you take. They are not for everyone, but some people certainly find them helpful. Before stopping prescription meds, or starting to take complementary meds, however, you should always consult with your GP or Rheumatologist first.

    You might be interested to have a look at the Versus Arthritis website that discusses the benefits and risks of alternative and complementary treatments:

    Best wishes, and keep posting,

    Anna (Mod)

  • Eirianwen
    Eirianwen Member Posts: 2

    I have been prescribed Amitryptalin but I also take Turmeric which I find helpful. My polymyalgia has flared up again so I am back on steroids for 3 weeks. The aging process is so cruel !

  • Poppyjane
    Poppyjane Moderator Posts: 357

    Welcome @Eirianwen to the online community

    I see that you have been following this interesting thread and mention that as well as turmeric you are taking steroids to help you with a flare up of polymyalgia. As Anna says many people combine both types of treatment under guidance and work out what suits them.

    I hope you have had a chance to look at the various links above on complementary therapies, polymyalgia and managing pain. All of them provide interesting information and will no doubt create more questions or comments , so don't hesitate to contact us again and share your own experience.

    If it would be helpful to talk to someone do contact the Helpline

    Take Care

    Poppyjane

  • Hi.....I'm Sue and I was diagnosed with fibro 2 years ago in addition to OA in my fingers & toes. Since then I've also discovered I have OA in my lower back, hip and knee. I was diagnosed by a rheumatologist who saw me twice and discharged me back to GP. I've seen 2 GPs who clearly do not know how to deal with fibro. I was on high dose pregabalin but gp cut it right down due to it affecting my liver. I was told nothing else could be suggested apart from self managing with diet and exercise. Exercise just makes things worse no matter how gentle. Just at my wits end now. I also have family coming to me with their problems and just want to hide away. I'm seeking counselling now in the hope that will help. How does everyone else cope? Thank you for reading this

  • PeterJ
    PeterJ Moderator Posts: 516
  • Diana62
    Diana62 Member Posts: 6

    It’s very isolating. I was diagnosed with fibromyalgia in 2006. I’m pretty much left to get on with it. There’s no groups in my area, I don’t drive and have only family and limited friends support to rely on. Meds don’t do much and have many side effects which can be worse in the end. Learning to pace yourself is very important to helping minimise flares. Sometimes doing something that you really want can cause a flare, however sometimes it’s worth it depending on what the occasion is. If you know you have an important event coming up then rest as much as you can beforehand to reserve energy. It’s difficult to get family and friends to really understand the complexity of this condition, I found passing on links to websites useful so they could read up stuff at their leisure, that way they don’t have to sit and listen to lists of ailments associated with fibromyalgia. I think there should be more accessible resources available for people with long term chronic health conditions. Perhaps things will move forwards soon.

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