Posted , 8 users are following.
Hi my name is Pete, I have severe fibro and cfs which I've had for a long time. I needed a friend to get me through when it all started and I was gradually getting more unwell. I was lucky to have a great friend but not everyone is so lucky. So I am offering to be a friend if anyone needs one. I hope I can help - Pete
5 likes, 36 replies
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arlene77671 pete23632
Posted
Hi Pete, that is so lovely of you, I am still trying to get a definite diagnosis of fibro at the moment. I don't know if just my gp can diagnose or I need to see someone else. I am being treated for vitamin d and folate deficiency at present but I hurt all over constantly! My mom has it too and apparently it runs in families. I have had to change my hours at work and have one colleague whom is not being very nice about that. Did you see a rheumy for your diagnosis? X
pete23632 arlene77671
Posted
Hello Arlene - My diagnosis was from my Gp thenI did get conformation from the rheumy, who was really nice, they also arranged further treatment so I could attend a local pain clinic and to have a pain nurse that I could keep in touch with.So make sure you get something similar, don't be fobbed off. Constant pain is nobody's friend Arlene, you gotta keep your spirits up even though it's so difficult at times. Glad to hear from you Arlene, if you need anything I'm here - Pete
arlene77671 pete23632
Posted
Thank you so much Pete that's good to know. Big hugs to you xx
sadie1980 pete23632
Posted
That is so nice Hun
I've had fibro for two years I had the diagnosis in January X I'm still coming to turns with it to be honest , so I could do with a friend
pete23632 sadie1980
Posted
Hi Sadie
Im here when you need a friend, I had great difficulty in adjusting when I started too, I was always hard working and full of energy and it got taken away from me in a couple of months and I had to give up work. Fibro can be tough I'm sure you'll agree, we all need friends, call upon me at anytime Sadie, glad to meet you - Pete
trisha87499 pete23632
Posted
That's so generous of u Pete, that's the good thing about on here, we are all friends immediately because of this illness that has been afflicted on us, I wouldn't wish it upon my worst enemy.
pete23632 trisha87499
Posted
Hi Trisha
its what I like to do, I spent many years working in the care industry and have been a friend to all sorts of people and all sorts of problems. We all need friends and as fibro is so hard for people to understand we need to be there for each other. We are all friends immediately you're right. I'm here if you need a buddy or a grumble - Pete
trisha87499 pete23632
Posted
Thanks Pete, and same here, we are all in this together, and it's only other people with this illness can totally get each other ????
pete23632 trisha87499
Posted
Don't worry Trisha, I have plenty to grumble about most days, you'll be hearing from me x
trisha87499 pete23632
Posted
Sare145 pete23632
Posted
Thanks . I haven't been diagnosed yet .
Think I do have it although a rheum has said they don't think I do. I reckon I'll need a friend in the future .
pete23632 Sare145
Posted
Hi Sare
Its not always about having the label of a particular illness although this helps to get treatment, it's about how we feel and if you feel unwell and its affects on you. In the months or years running up to a diagnosis we can have a lot of questions and go through tough times. I did, and I had no idea what was happening to me and what was next. Hope I can help you somehow if you need it, if not then just someone to complain to. I'm here - Pete
Sare145 pete23632
Posted
Hi Pete, can I ask how you were diagnosed? Did the Gp & rheum do the tender point assessment ?
What symptoms did you have when diagnosed ?
My rheum has done the tender point assessment twice and I only have 5 or 6 - she thinks a lot of my pain is anxiety related and wants me to be mentally in a better place before she can really see what's going on.
I am really anxious about it , I'm also on antidepressants now because of all this , I feel like I'm losing my mind.
Can I also ask if you're better now than when you got diagnosed & if you're on any medication?
Hope you don't mind the questions ,
Thanks , Sare
pete23632 Sare145
Posted
Hello again Sare, I don't mind the questions at all, so here goes. I was diagnosed after have widespread chronic pain for some years along with episodes of depression and anxiety. I was just a mess to be honest with you. I get that you're losing your mind and I think everyone with Fibro or Chronic fatigue can sympathise with you, we all feel like that, even after being diagnosed. You will get your answers, it takes time. Your Doctor has to be sure it isn't anything else. Fibro can be confused with other conditions. I was diagnosed around 5 or 6 years ago and was told at the time that I have very severe Fibro, the doctor said that he had never seen Fibro so bad. I have been through lots of meds and have settled on. A Fentanyl pain patch, which is morphine really. Morphine tablets along with pregaballin and fluoxetine. Things haven't improved with time but I have learned how to talk about it. Hope this helps you somehow Sare. Please don't think you're alone because you're not. Tell me about yourself. If you want to share your feelings then you can send private messages so you're life is there for everyone to read. Whatever suits you. Hope you feel better soon - Pete
pete23632
Posted
sadie1980 pete23632
Posted
In mega pain took my son to longleat yesterday as it was his 2nd b day ! Along with my 12 and 16 year old ! I did amazing all day then on way home the exhaustion hit me and today I can't move !! Oh the joys of this horrible disease ??
pete23632 sadie1980
Posted
Good morning
isnt it horrible that we can't go out for the day without having to plan to be in bed for up to a week afterwards. I could pull my hair out in clumps and it would be more fun. I hope you recover quickly with as little pain as possible. Keep your chin up.
sadie1980 pete23632
Posted
Then bank to work the week after ! Great fun
trisha87499 pete23632
Posted
I had a bad night, I overdone it yesterday, lunch with my grandson, then the cinema with my son, I couldn't sleep most of the night due to knee athritist pain and cramps on legs, insomnia!!! The usual lol it was worth it though, I can catch up on some sleep later, how's everyone else
pete23632 trisha87499
Posted
I have the worlds worst headache today and been up all night! I'm sad that I'm gonna miss a day out with the family today, sat in with the curtains closed. A great start to the summer. Glad I have some people to share my grumbles with, thanks - Pete
trisha87499 pete23632
Posted
Typical isn't it, I'm the exact same today, although I feel so tired after my sleepless night I can't seem to take a nap, it's frustrating! Nice day outside as well ??