Is the severity of fibromyalgia generally the same for everybody? Now the weather has changed I feel horrible every morning totally exhausted and back arms and neck hurting like hell after about 2 hrs from having my meds it relieves it and I can try get on with my day. I was loads better during the summer. Pregabalin helps loads before I was prescribed it I just wanted to die and spent most of my time laid down because that was the only thing took the agony down a notch
I know what loneliness is and how negatively effects your life I only left the house at most six times a month and very rarely spoke to anyone. It’s really opened my eyes to the suffering of elderly and disabled people of what they have been going through. This awful condition has stripped me of my humanity. At times I think I’m only alive to suffer. I developed a blood clot beginning of last year and didn’t realise what it was and put it down to the fibro until it then developed a massive infection. I’ve never been in so much pain in my life but was refused pain relief because I’m on a methadone program even the I’m regularly drug tested and there always clean of illicit drugs it was badly delt with by the hospital at first missing it not treating the infection and told me to see my GP i dare not ask for pain relief for fear for been classed as a drug chasser I attended the hospital three days on the trot sat in agony for 15 hours in total. Trying to explain my pain from fibro was sniggered at by nurse and totally ignored then at third day told I didn’t have a clot and see my GP even tho I couldn’t stand up right or put any weight on my leg and had stinking discharge running down my leg I suffered any two week and my GP rang an Ambulance they wheeled me to the nurses station then told me to jump off and go sit down they clearly didn’t believe a word I’d said about the pain I was in after half an hour I couldn’t cope any longer and collapsed sobbing on the floor begging for pain relief which I got for the first time after suffering for weeks they confirmed a massive infection I had a high temperature high blood pressure they would’ve liked me to stay in so I could have IV antibiotics but my anxiety was so bad I just wanted to go home they prescribed me pain relief and high doses of antibiotics it took three weeks I’ve been in bed not even been able to get to the toilet because of the pain once it cleared up I realised I still had the symptoms I started off with luckily for me whilst attending an appointment with another doctor for a different problem I explained what had been going on and she examined my leg and rang a friend who was a vascular surgeon for advice he booked me in for a scan which confirmed a blood clot I was prescribed a blood thinners but there was no follow-up the GP wasn’t informed I had a blood clot and once I finished the course of blood thinners I still have the problem it’s taken me a year of begging to be referred back to the hospital before I’ve actually now been sent i’m told I should have an appointment in January it would’ve taken eight months to get the appointment after having the pain relief whilst I had the infection the GP has refused all pain relief because I’m on methadone and he said that I’m on enough pain relief recently I’ve got a new GP and she apologised and told me I should never have been refused pain relief but what’s done is done now how I’m still here now today alive I do not know unfortunately still in today’s day and age medical staff totally disregard people with fibromyalgia has been lazy hypochondriacs I wish they could live a day in my shoes do you understand also the attitude to drug users is automatically the same that you’re a drug chaser a deceiver a liar you only want one thing to be in a situation where you’re in agony you don’t ask for medication to relieve the problem because you don’t want to be accused of drug chasing me too afraid to ask because I wanted them to take the problem seriously and deal with it I shouldn’t of had to keep my mouth shut too scared they’d send me way and not help it’s not fair you feel like you’re worthless your pain doesn’t matter when I’ve managed to get myself clean after 25 years of using Starting at 15 self-medicating after going through a horrendous abusive childhood suffering sexual mental and physical abuse.
We are taught as children not to judge a book by its cover just seen a drug user without understanding their story and the reasons they use drugs to begin with it wouldn’t be done with any other victim of abuse things need to change
It feels good to be able to have a rant and get it off my chest sorry so long I’m not looking for sympathy or attention I just I know you really do understand what it feels like and your not going to judge me
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Gavin79
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Hi Gavin - firstly in answer to your question... No, the severity of fibromyalgia is not the same for everyone. It can vary from someone who has mild symptoms that are little more than an inconvenience right up to someone with severe symptoms, housebound and even bedbound (and everywhere in between)
Sorry to hear that you have been through such a difficult time... There's no reason why health professionals dismiss fibromyalgia so much and it happens far too often - with too many people struggling to get adequate care and support.
Thankfully your new gp sounds a bit better, and can hopefully help you to find something that will offer relief
my new GP was the first I left feeling heard and a plan put forward I’ve struggled through and I’m still here we just got to keep going. Finding a GP that actually cares and believes you is few and far between. I’d love to find some volunteering where I can put my life experience to good use maybe find my true purpose x.
Hi GavinI think it's marvellous you have written about your experiences.I hope others read it all and appreciate how much you are helping yourself. From my career I know what you see isn't always what you get.
Hi Gavin, just read your post and you are so right, you should never judge a book by it's cover! I suppose we are all guilty of it to some extent but I've always found people never fail to surprise or impress me as you've just done. So glad you've found a good GP, they're not so easy to find these days. Take Care x
hi Gavin, first of all well done to you for 25 years clean, such an achievement, that’s amazing. I am so sorry that you have been treated this way. Medical people I always thought signed an oath to protect and care for humans without bringing in their own beliefs or discriminations they are there in their capacity to support and help you 😤they should never ever be judgemental and it’s an absolute disgrace how they have treated you. Sadly this seems to be all to often with the horrific situations such as yours. Sending you 🤗🤗🤗🤗🤗and my heartfelt thoughts. Have to go to work now but just wanted to let you know that I am thinking of you. Take care Gavin, you are an amazing person and never forget that 🤗🤗xx
oh my goodness gavin 79 I can’t believe the horror you have been through my heart goes out to you I’m so glad you have found us and able to let it all out I wish you luck for your future take care 🥰🥰🤗🤗
So sorry to hear about your horrific experience. I can’t believe people who are supposedly in a caring profession can be so callous. I’m glad you’ve got a more understanding gp now. Some people just just don’t’get’ fibromyalgia at all. It’s good to rant and do good that we have this site to support us. Sending good wishes your way. Stay strong! 🙏🏻
Dear Gavin, I was very moved by your post. You have suffered greatly but you still have compassion for others and a desire to help despite your ongoing pain and suffering. I'm glad you have found a good doctor. I hope everything will move and improve for you now. Most of us don't come across people who are right at the coalface of life but you are also part of a narrow seam of people who are diamonds at heart in their bravery to confront their own past and their desire to help others. - Everything tough seems to be happening right now. Weather, sickness and the fear of it, political turmoil, war! Urrrgh! Even our Earth is suffering. All of this adds to the sickness and pain felt by sentient and sensitive people. - Maybe connect to Nature as often as you can too but it's probably wise not to go wandering off in the cold away from where people are in case you feel too tired to get back home. (It happened to me and I was then diagnosed with fibro).- Someone once wrote "You are a child of the universe no less than the trees and stars. You have a right to be here." Type in 'Desiderata' to your search engine and you will find all the words if you don't know of them already. These are words every human being needs to hear. -Be gentle with yourself! - May life's blessings flow back to you. It's definitely time for that. x
Excellent rant Gavin and just about sums things up. It is not the same for everyone and the attitude of the medical profession is not the same for everyone either. I just go with the flow and usually end up in hospital. I had a conversation after a two week stay with my GP and it went along the lines of GP "how did you end up in Hospital", Me "taxi". GP "I meant who referred you", Me "I tried the surgery nine times, spoke to the locum twice, the rest of the time I got advice from the receptionist on when to call". GP "yes, but who told you to go to the hospital", Me " called a taxi, got into it and told the driver I did not feel well and need to go to the doctors, he took one look at me and took me to the hospital, so I was referred to the hospital by a taxi driver". Two days after that I awoke to a consultant asking me how I had gotten into the hospital reception apparently the taxi driver carried me in. One hour more and I would have been six foot under, the shape of things to come perhaps, perhaps already here. Rant!
Hi Gavin, if only people took the time and didn’t make assumptions about peoples situations. I too had and still have at 61 ptsd from early childhood abuse from as I call him ‘it’ I am the middle child of three sisters. He livedy younger sister, was fine with my elder sister but for reasons unbeknownst to me that I shall never get answers too absolutely hated me from a small, but young enough to remember child. It as I know has had the most devastating effect on my whole life. I can’t change it, I have to‘live’ with it and will do until my dying day. It affected the partners I chose because I never felt worthy, I gave my everything to relationships but was so eager for love that it made me a door mat for them to tread all over. At 50 I finally found my worth through a very dear friend I work with and she has made me understand how I should value myself. 🙏I cannot underestimate how she has changed my life, she has made me grow in confidence and self belief that I never knew I had in me. Today I stand up for myself and will not let anybody make me feel worthless ever again. The sad part is I asost of us have trust issues and will never be able to have a relationship because I cannot afford to put myself in a situation only to be let down again. But thankfully I am happy on my own and have such special friends, enjoy my own company and a thankful that I now have had a peaceful rewarding life for the past 15 years. I feel sad that others have made me feel that I cannot trust because I would have loved to have been happy in a relationship and celebrated anniversaries etc but I’m doing more than good so I count my blessings. Take care Gavin and keep in touch with all the wonderful people on this sight that are there for each other and want nothing in return 🤗
Pain is a strange thing and we all perceive it differently. For me, there is always muscular pain, but I have taught myself to ignore it to an extent. I also get bone pain, which I find worse. If I knock myself or fall, I bruise like nobody's business, and it takes ages to go (my knees are the favourite places to get walloped,) Now, I do have one duff knee, so I have to be careful when I'm walking, because I can't get up again!
Almost all my pain is from the waist down, although my left shoulder is giving me some grief lately, and I'm starting with arthritis in the hands.
I am very temperature sensitive, cold makes it worse, warmth eases it to an extent, but summer heat can get too much.
I joke that my internal Thermometer is broken.
I also have gut issues which results in an intake of antacids if I have had too much bread, cake or pies, gluten sensitive I'm certain , but I cannot get a diagnosis without going back on them and getting blood tests and a Biopsy. No chance!
I'm not prepared to go through all the pain and discomfort in order to get a diagnosis.
I find fibro very frustrating as I used to be an outdoors person, hiking, rockclimbing, riding, I used to help out on a farm most summers, but what can you do when your body says 'NO!'
I also was a qualified nurse, but that, too had to go.
I now live in a bungalow among lots of elderly folk, whom I can interact with or ignore as I please, I don't correspond to what folk expect of an old lady! I wear clothes I like, which is trousers, Teeshirts with slogans on today's is an owl giving the side eye and says 'Stuck between IDK, IFC and IDGAF!) I refuse to conform!
I think I'm the bane of my son's life and long may it continue! I'm 74, and my son is my carer!
I don’t know where I am right now, I’ve got a plate of spaghetti hoops on a slice of toast that has gone cold for my dinner, easiest thing I could think to make. My dear Mum 94 had another fall two weeks ago tomorrow, 1am as all her falls have been going to the bathroom. Ambulance called, took her to local hospital, no beds available so into another hospital where like others waited for 4 hours in the ambulance 😡for a bed. It’s such a good hospital and I thank god for the amazing care she is getting🙏She was diagnosed with melanoma just before covid lockdown. Mum has never spent time in the sun, so just one of those things that can never be explained 😢scan shows cancer has spread and blockage where bowel, mass on her liver😢next step will be intensive care as Mum is too Ill for any surgery and she wouldn’t want it anyway, she’s had enough. Next step for Mum will be intensive care and the end of her life. Had a call this afternoon, thought it was the hospital but it was my drs surgery straight off telling me he was taking me off my naproxen and diazepam. Tipped me over a cliff as can’t get through a day without either because of pain and my co codamol was being stopped too. I explained in tears and emotionally I can’t get through a day without them and he finally agreed to prescribe th for the next 3 months because of the situation with my dear Mum. I’m not going to apologise my long msg as I needed to get this out. Empathy I’m being honest will be greatly appreciated but in my darkest of days only needed to get it out and sadly in a way I feel I am able to do this here completely even though I have friends and my dear daughter it’s just different and helps
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Work don’t understand or care about my limitations 
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