It has been my longest and toughest journey of my life.

[Mazymoo]

My fibromyalgia started in a writer way. In 2019, I became very ill with several bloody UTIS, which then affected my skin, my body was producing what was similar to small fish scales, they would ping out of my skin all over my body. Come out my tear ducks. When I was on the loo I could hear them hitting the bowl. In my period blood. As I am 45, gravity is not my friend, I could feel these things in the bottom of my feet, the lips of my my lady bits,fingers, back my neck and even lips and tear ducks. I was beside myself and had gone to see 9 different Drs, who had a different name everutime I went in. Before one Dr said I was having a psychotic episode and that what o was describing no on else could see. Which every one I showed could, as I had taken videos and saved the bits. She didn't want to know. Gave me a load of tramadol, oramorph and diazepam and asked to leVe. It took me over a year to get better. But, as I got better, I noticed, I was aching all over, like growing pains,bit more intense. I was getting zapps straight through my bones. I couldn't sleep and then after 3-4days, I would swell non stop. My anxiety levels were off the scale whenever I tried to leave the house, I end up a mess and stay in, so, if I was lucky I would be able to leave the house for about 10 minutes before I would have a break down and have to go home. The pain in my hands and whole left side is the worst pain I have ever had. Eventually I have my job as a senior carer, as I would have forgive myself if anything happened with my lovely ladies and gentlemen because of me. Then the pandemic hit, my husband lost his job and we became homeless. Throughout this whole process my co work on has gotten so much worse, I have been for so many scans, physio, Mris etc. They had me on tramadol, codeine, gabapentin, oramorph and diazepam at one point. So, I had abit of a tantrum and cried "I want something to stop the pain, please help" I was eventually put on fentynal patches, which saved my life. But, as my tolerance went up, so, has the dosage. But, if I am perfectly honest, I feel better in terms of pain than I ever have done. Although, recently have had some really bad days recently. But, in comparison to what it was, I can actually do more stuff now. It's just the bad days that are overwhelming and bring y o u back down.with a thump. Im getting CBT help and I talk to a really nice lady. And, thankfully, aftwr waiting 5 months, I get full PIP, a blue badge and a car. Just need to find a property that has no stairs, as we live above a club, where you have to climb 13 Massive rusty iron steps, navigate the flat roof (death trap in winter) then make it to the our front door without falling or slipping. Im sorry I am waffling, I have only just joined and I am so happy to be meeting people who understand and know this awful condition. Xxxx

[rosewine]

So sad to read the journey you have been through. Pleased that you are now getting the help you need and the full PIP is a big boast. I hope that you will soon be able to get more suitable accommodation, preferably without stairs.xxx

[Mazymoo in reply to rosewine]

Thank you hun. I have just read back my rant and realised how confusing it sounded. Lol I am finding it's a very lonely condition, I spend 90% of my time on my own indoors. So, talking to you lovely people is so refreshing and has calmed my mind alot. Reading all your journies makes me realise I am not on my own and I am far from the o my person who has it. Xxx

[Suffering2021]

omg you poor thing , totally understand the pain right now is unbearable I hope you get your scan and hope the medication helps don’t stay on it too long tho better to be on lower doses of none at all and when those flare up days come take some medication it works much better when you’re not on it all the time .. get off of fentanyl gabapentin makes you put on weight diazepam if taken accidentally can be fatal please be careful

[Mazymoo in reply to Suffering2021]

Oh my god, I have put on 4 stone since I have been on the meds. I have always been fit and very thin. I am the heaviest I have ever been, I am heavier than I ever was with all 3 Of my pregnancies. I actually spoke to my Dr and he was gobsmacked at the dosage of fentynal I am on (137.5mc- so, I have a 100mc patch on and a 37.5mc patch as well, that I have to change every 72hours) he said that I have to come down gradually, but as my mental health is not stable and under control, he is going to give me 3 months and then I will have a review. I have stopped taking my diazepam. I am on 45mg of mirtazipine, which gives me horrendous nightmares. It was prescribed as I was going 3days without sleep. It does make me sleep, but, I don't stay asleep. I wake up every hour or so, then I spend 10 or so minutes trying to calm my mind and go back to sleep. The Dr gives me A weeks worth of 7.5mg zoplicone every so often, which works. But, when I have none left, my sleep goes back to broken and messed up again. I realise I can't be permently on sleeping tablets, but I am not sure what else to do. It doesn't help, that the Drs all say and believe in different things and medications. Thank you for your advice, I really appreciate it. Xxx

[J-68 in reply to Mazymoo]

Hi Mazymoo I’m very sorry to read about your illness I’m also on 100 mcg of Fentanyl but that is for a spinal degeneration.I too have been very depressed and was on mirtazapine I don’t know if you know that this drug can also make you put on weight I gained 3 stone with it .Just keep an eye on your weight there are other antidepressants that will work just as well I’m on cirtraline and it keeps me stable

[Mazymoo in reply to J-68]

Wow. Thank you for your message. I have always been around 8 stone, I am now 11 stone. But I have piled it on in literally 6 months. I had been scratching my head. Bit, now you have sent that message, it is since I have been on the mirtazipine. I am sorry to hear about your condition. Do you find the fentynal works? I wouldn't be able to function without mine, i have tried so many different types of pain relief, but nothing has worked as well as the patches. As for the mirtazipine, they give me awful night terrors. Did you get them too?Maz

Xxx

[J-68]

Forgot to say I’m also an I’ll health retired nurse with recurrent utis we have so much in common x