Hi everyone, just introducing myself on the forum I was diagnosed recently with Fibromyalgia, it's only taken 4 1/2 years! I'm still reading and learning about this thing and thought the best way would be speaking to the people who have real experience of it. During the last few years I've been checked out for all sorts, bloods always normal and most recently investigations for MS. Had MRIs, evoked potentials, lumbar puncture. All normal thankfully. Having a relatively good day just pins and needles in my right side of face and some thigh, hip and calf stiffness. Oh and some itching, I always itch!
Welcome to the Fibro club. There is lots of help and advice on here, I visit most days. I were diagnosed 3 years ago now, yes the itch drives you mad..
Hi Anne, thanks for your response. Just started on Amitryptiline, had tried Gabapentin but it knocked me for six, felt like I'd had a right skinful, not good, also awful stomach pain. Just learning at the mo really so won't be of much help to anyone but you never know. reading with interest tho, everyone has their own way of coping with it and it helps to chat with people who understand. I thought the itch was the menopause lol!
Hi Bee, yep itching is a nightmare especially when it wakes me up i thought it was maybe the tramadol, all your symptoms are exactly the same as mine, what i don't understand is fibro is supposed to be the same all over body and my right side is a lot worse than the left, i have a MRI scan coming up soon so hopefully that will reveal something
best wishes james
Hi, you must be right handed. I know when i was first diagnosed my rigt side was worst. Pins an needles not so much for me i tingled with pain. I tching yes i thought i was crazy, i thinlk the tramodol makes ypu itch more but it does help pain.i had this illness for about 20 or more years now. Im tired of it,but got to keep on moving on. Hope you test go well.
Hi James, thanks for your post. Oh the lack of sleep is a whole problem all on its own isn't it?! Strange you mentioned your symptoms are worse on your right side, mine are too. Especially my headaches and face and jaw pain. A Neurologist I saw recently thought I had MS, said the symptoms were all under the neurological umbrella, MRIs of brain, cervical and thoracic spine were ok. Fingers crossed your MRI is clear, before I was diagnosed I just wanted answers but the waiting is torture. Doesn't help the stress levels that's for sure! I sleep with a fan on next to my bed, the cool air helps my restless legs and itching. Before I had the Amitriptyline I used an over the counter antihistamine for the itching, one of the older types and it relaxed me enough to help me sleep. Obviously I'm not taking that now so I'm just waiting to see how long my new med will take to work, keeping everything crossed it works! All the best.
Hi! I wonder if Jimtorry is right handed! Interesting. 20 years is a long time, I'm tired of this already, it can be all consuming. I even had to have my breasts checked as they itched and tingled so much, it turned out fine but was prior to my diagnosis so was worried sick for a while. It's a strange and complicated condition. I do wonder if men experience symptoms in the breast area or if the itchiness or tingling there is specific to women's breast tissue? Nice to hear from you and everyone who has answered my first post today, Thankyou all
Hi there, yep I itch like mad too! I do take morphine as well though which causes itching but lately it seems to have got worse. Someone suggested trying after sun which I have and it seems to work,especially before I go to bed-it seems worse at night or when I get warm. E45 anti itch cream also helps.
I was diagnosed approx 4 1/2 years ago as well and it took about 16years, a lot of poking and prodding, x rays, scans and blood tests, but I got there in the end.
I have used other forums but joined this one a couple of days ago and have defo found it's the best I've found-good advice and really lovely understanding people.
aye Bee i am right handed and yep i get itching tingling pins and needles all over haha, especially the right hand side my right leg feels as if it is wooden and inside out its a weird feeling. Everything about F/M is a personel battle as everyone reacts differently and it is a long drawn out battle to find a happy medium. I educated my gp about F/M and she loves the input i give her, be confident with your gp tell them you use this site as they as proffesionals also use it, remember your GP is in the dark as much as you are about this illness. best wishes james
Hi there, after sun is a good one, it makes sense. Gonna give that one a try tonight, I find it worse at night as well, thanks for the tip :-) sounds like you've had a long haul to get a diagnosis too. I'm not one for forums but I've felt so isolated recently and im glad I finally registered here today and I agree the people here are lovely, the replies I've had today have really picked me up.
Thanks for the good advice. My rheumatologist did say himself they don't know why this happens, what causes it but apparently one suggestion is that can be down to a traumatic accident or event in life. Makes sense to me as this all started after a bad pregnancy with pre eclampsia, then an emergency c section plus lost my mum not long after. Just went down hill from there lol. Anyway I'm trying the after sun tonight for my itching, anything is worth a try and it just might help! Hope you get some sleep tonight.
Hi Busybeemumof3, I totally understand what you have been going through and my pain specailist is trying to tell me I don't have fibro. During my last 4 1/2 same thing blood tests, mri's, ct scans, shots in neck, back and under hernia area when all this started. I have the aches, headache and some pins and needles also. He says pins and needles don't mimic fibro. Had a lumbar spine mri and they see!) a 3mm spondylolistheis at L4-L5 with mild left more than right neural foraminal narrowing. 2) mild bilateral neural foraminal narrowing at L2-L3 is also seen. 3)No significant spinal canal snenosis. So I go tomorrow to him again and have major anxiety about this visit. I just applied for SS on Friday according to my diagnosis from 2 rheumatologist. Do you feel frustrated with the physicians like they don't belive you! I'm tired of being in pain as I'm sure you are. Remember we are in this together!! Have you been to the Rheumo dr's?
Hi Lucyred, I have just had my diagnosis a fortnight ago, so I'm new to this myself and don't have enough experience of this to really advise but I can listen, support and share my experience to date. I asked for a Rheumatology referral after a Neurologist checked me out for MS and found nothing. MRIs clear, evoked potentials and lumbar puncture all normal. I don't want to be unwell, nobody does but I was so frustrated at that point. I thought I was going crazy, starting to doubt myself. It was worrying time and to have no answers after all the tests and stress, was frustrating definitely. It was rightly pointed out to me earlier today that the medical profession don't know enough about Fibromyalgia yet. I have pins and needles in my hands, feet and face, muscle pain/tightening, hand/finger pain, foot pain from tendons. Diagnosed with migraine last year, headaches are horrendous along with jaw pain. Shoulders, hips, thighs and arms. The fatigue can be awful. It was the Rheumatologist who diagnosed me based on my test results consistently being normal, a thorough physical exam and typical pressure points were very tender. If you havent been seen by a Rheumatologist I'd certainly ask for a referral. It just takes one GP who's willing to listen to make the difference, I'd had years and a string of doctors telling me I just had to get on with it or it was stress or because I was depressed. Then I struck it lucky with a locum doctor would you believe. I hope your appointment goes well tomorrow, be firm, it's your health and your body. I'm glad I've found this forum, it's good to talk to people going through the same or similar. Let us know how you get on tomorrow.
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Sorry that just happened something is going wrong with my computer, now I went to my phone. I am glad they finally have come to Fibromyalgia so you know like I it's not in our heads even though it doesn't make it any easier. I'm sure like me you have your good days and bad ones. I will be keeping this whole group in my prayers! Yes two Rheumotologists did diagnose me thank you for the advice I appreciate it very much. I'm glad I found this site! Quitting my job was one of the hardest things in life I ever has to do. I really wanted to make it to and past retirement age. I love people! I worked in pharmacy and loved what I did. Now I have to learn to adjust to a lot of things. Take care of yourself!!
I had too quit along time ago because of back degenaration and fibro. I live alone and it gets so lonly at times. Noone understands and dont want to bothered by me includeing my daughter. Sorry to here you have this stuff. Pain and unable to do much. Do alittle sit down so it goes. I really need a friend. Take care i have alot to share
Hey Debb, I know as well as you having Fibro and disc degeneration is no fun. I'm sorry for your loneliness, when others aren't walking in your shoes they don't have a clue! I quit the end of August now permanently because of not being able to focus, making mistakes etc.. Sorry that you have to be by yourself so much! Well we will talk more! Have a good eve!
I know what you mean about forums etc-my mum has been on at me since my diagnosis to find a fibro group to go and meet to chat to people in the same boat-said she'd come with me as my anxiety means the only place I go alone is to work, but I'm so exhausted that I really haven't got the energy.
found this forum four days ago and have already found it a great way of chatting to people when you feel like. You can come on and have a look when you have the energy. And when you haven't been on for a bit people are still there with advice
I hope the after sun has helped you a bit and you're feeling less isolated xx
I work in a pharmacy and LOVE my Job. I worked with dementia patients for 13 years and loved that, but found the hours and the work too demanding-I just couldn't keep up and give my patients the support they needed and deserved, so left, which made my depression much worse.
started work at the pharmacy and found that I could still interact with people, but I'm finding even three hours a day hard to manage at the moment.
Before my diagnosis I though I was really loosing the plot-I'd had so many doctors do x rays scans blood tests, you name it, but all said there was nothing wrong. To finally be diagnosed was actually a relief in a wierd kind of way-I cried for the rest of the day, but don't know if it was with relief at finally being told I wasn't crazy or that I have a condition that I have to learn to manage at 31 years old. I'm now 36 and like you expected to have a happy heathly working life and get to retirement age doing something I love, but that is looking less likely by the day.
I'm glad I found this forum as people seem lovely and are always ready with good advice and support.
good luck and hopefully chat again xx
Hi Victoria,
I used to feel down all the time the same as you there were days when i just couldn't be bothered. Then i started practising meditation/self hypnotism there are loads of free stuff on the internet to try out, i then came across a hypnotist Adam Eason (google it) his website has loads of free stuff even videos where you can have some fun and practise self hypnotism technics his work is very refreshing and has made a big difference to my life and coping with F/M. You will have nothing to loose by checking him out and you can even send him e-mails about your problems with health. He will go out of his way to help you.
best wishes
James