Hi everyone ☺️ I've just joined and I'm hoping having people to speak to will help as noone gets what I'm going through. I feel like I'm going mad lol I was officially diagnosed in June after a year of tests eliminating everything else and the rheumatologists said if everything came back normal then it's likely fibromyalgia as I am having problems with sleep and brain fog too. I thought this may be perimenopause, but I've been on HRT for nearly a year now and the pain just keeps on getting worse every day and it doesn't matter what I do. Rest, exercise, pace myself, etc, the pain keeps on increasing. I worry that I don't have it as it just seems to be in my arms, especially my upper arms, my upper back and neck. I did have pain in my hips and groin area but this seems to have died down a bit, but the pain in my arms and neck is excruciating. I am still able to get out most days for a walk, but by lunchtime I'm knackered and doing tasks is getting harder everyday as I'm not sleeping and getting 4 to 6 hours sleep and broken waking up between 4 and 6 times. I keep waking up in pain and it even hurts to pull the duvet over me. I can't even push myself up out of bed. I suppose I'm just wanting to know, does this sound Like fibromyalgia? If so, is it normal for the pain to keep increasing like this? Will it stop at a certain point? I know it must be FM as I haven't done anything to cause this pain, but I also worry that it's something else, but know it can't be as my test results are normal! Arrrggghhh. It's really getting me down and it has completely changed my life. I have even had to leave my job in the NHS which I loved. If anyone has any advice, it would be gratefully recieved
Feeling isolated and confused - Fibromyalgia Acti...
Feeling isolated and confused
Oh I'm sorry you're struggling so much, and I thought I'd just try and give you some verbal support, I'm hoping you'll get plenty of replies regarding your health issues and maybe you'll have a better idea on FM, I presume you've had every blood test or even x rays to cover your condition, I'm going through various scans since May, and even now I've not had the results back even though I know I have a growth in my pelvic area and also a couple of smaller growths on my adrenal glands. I've done a lot of ground work myself to even get this far, boy o boy and I've still got to go back again for another scan on my liver.
Would a diagnosis make you feel like it's something less sinister and try to live with the FM, or are you worried its something else, I'm not in control of my situation as yet, and obviously I can't do anything, but wait, I'm not worried as such, and until I get an idea from the surgeon I'm not getting myself in a frantic state of mind.
I truly hope you get some good feedback from the kind folks on here,and I'm sure they'll reach out to you and give you a better reply than I can give, I wish you well 😊
Hiya 😊 thank you for your reply. It is nice to speak to someone who is unfortunately suffering too. My friends don't really get it and don't know what to say 🙃 unless you are going through this, then you couldnt even comprehend how debilitating it is! I hope your results come back positive. I had a shoulder xray, no other scans. It's hard to get on the nhs without being referred to a particular speciality and the waiting lists are soooo long. So one shall persevere. Thank you for your support and let me know how you get on with your scans. Have a lovely day 😊
Hi, I have never posted on here before so first time .I felt I had to answer I have Fibromyalgia like yourself & also had this pain your describing neck,shoulders,hips groin & arms both sides. i always get brushed off at Doctors but seen this female Doctor at my surgery last week & she listened to me she said that she sure it is Polymyalgia that I have also so gave me steriods lowest does and omg 😲 I took 1 tablet & within an hour I could feel the pain getting better.I'm can't believe the difference this had made me feel 😀
Have a look online at Polymyalgia.
Good luck 👍
Hiya 😊 yes I had asked my GP could it be that, but my tests have come back negative. I am going to go private and see what they say, as although my GP has been great. I feel I've hit a brick wall and she has done as much as she can. Likely fibromyalgia isn't a good enough diagnosis. It is either that or it isn't. I hope you continue to get better xxx
Hi pony, I have polymyalgia rheumatica as well as fibromyalgia etc. when my doctor said I may have pmr she said within a day or two of taking prednisolone I would be much better and that’s really how it was diagnosed. Get your gp to prescribe it you- you cannot stay on it long term as there’s too many contraindications but it definitely helps at the time. 🙏
I will ask. I didnask if I could get a course of steroids, but she said I would get some relief but it would just come back?,
Unfortunately it does flare up from time to time- I had almost a year after first diagnosed and a flare. You are usually started on 15mg for 4 weeks then gradually decrease hope this helps you
I will certainly ask 😊 thank you
Take care going private; it's expensive, and often when you go back to your GP they won't accept the results of the private Doctor's tests.
Private medicine is a minefield for a desperate NHS patient. As a Former nurse I have had experience in both NHS and Private medicine, and NHS is better! OK you can get tests and results quicker, but if your GP won't act on them, you either have to continue with Private or stay stuck in the queue!
For me, it's just a waste of money, and very few Private Hospitals or Clinics have Emergency Services. Take great care.
Cheers, Midori
Ahhhhhh! Thank you! Yes I am desperate lol im speaking to a rheumatologist that I used to work with and see how long the waiting list is NHS.
Thank you for your honesty xxx
Hi Pony240852Sorry to hear you are in the thick of it. I have complex autoimmune as well as Fm and random symptoms can increase worry,that then makes things worse.
I have found if useful to control the things I can and ask specific questions. I let go of things I can't change.
I have had help with sleep (sleepstation) and pain (flipping pain online)
As soon as my sleep and pain upstanding changed I could cope better.
It is scary,
I hope you get some more sleep soon..
Take care.you are not alone.
Gigi
Thank you for your reply. Yes I think if I got my sleep under control then that would help, but I have tidied up my sleep hygiene as much as I can? I've stopped drinking caffeine altogether, I'm teetotal, I go to sleep at 11pm every night and alarm is set for 8am. Lol I never get to 8am! I read before my bed and I get to sleep okay, it's the waking up. I used to be proud of my sleep quality and would get a solid 8hrs with no waking 😒 have you any tips? I have seen sleep station before. I wil check it out again. I don't think I had the money at the time. I do try to be positive, but as you know it's hard, I have a good understanding of what's happening and that it's not controllable, I can only control how I react to it. I am working on my nervous system at the moment too to process past trauma as this is apparently a trigger for FM.
Any tips on sleep will be gratefully received
Thanks
Magnesium spray and 30mg of duloxetine saved my sleep! Everyone is different with the pain killers tho… and duloxetine took weeks to work but I am so glad I stayed with it.
I also had to give up a job i loved - but in that first year i slept so much and got everything imaginable - my body had basically screamed at me to stop and it took a full year of rest and then the most gentle swims and the shortest walks to be able to start to function again.
That bit at the end though - I was in ever escalating agony, reached the foot of the stairs at work and thought - I just can’t do this. I ended up going private ask the waiting list as a year where I was to see a rheumatologist.
The consultant diagnosed me with EDS OA and Fibro and I have not worked since. It’s been a huge shock but am here to tell you to try everything. Turmeric helps me, some people it won’t, amitriptyline was awful for me - for some it’s great.
I honestly feel like I have turned a corner so am here to say do not give up hope - you body has just taken control and is screaming at you to stop and listen. It can and will get better.
The community on here is brilliant and you will find you are not alone - even at 3am!
Take care
Ellen x
Thank you 😊 🙏 💓 yes the spray worked for a while and I tried amitriptyline, but it did nothing. It helped with sleep at the beginning, but alas it was short lived. I bought a tens machine at 1am this morning lol and that arrives today. I am trying to stay away from the antidepressants for pain relief. But I fear I may have to buckle as living in this amount of pain is not good. I think I still do too much. I've been off work 18 months now and i don't do very much apart from a walk in the morning if I can. I've tried doing nothing and it doesn't help, and I have tried soooooo many things to see if that helps with the pain. But nada. I will have a look at the private route too. Thank you your advice and inspiration and hope that things will get better.
I am so happy I found this community as I was in a really dark place at the beginning of the week, but feeling a bit more positive now
Thank you 😊
no problem - keep us posted as to how you get on.
I found a tens machine a lifeline in labour so I have one in the cupboard in case!!
I will do 😊
Hmmm I used it yesterday and I'm really sore today 🙃 it's hard to say if it was that lol
ach - I blamed the rain here but good to have a warning that the tens machine could make it worse!!
Yes I feel a big difference from yesterday, I'm too scared to try it again lol 😆
We can’t win 😂😂🙄
I know I go rigid the day after a massage so it sort of makes sense that a tens machine would do the same.
Sorry you were a guinea pig it’s the last thing you needed!!
Will try mine at the next flare and report back…
Bloomin Fibro 🙈 x
Lol aye i will just return it. I only had it on at 1! £25 better off in my pocket lol the quest goes on. Can I ask? When your FM first started, did it increase in pain for the first year? Does it keep increasing? Have you found any ways to reduce the pain? I have tried a lot of things, like a lot lol my pain management physio was like wow! 😆 and nothing seems to reduce it and it hasn't decreased at all since it began a year ago xxx
No problem at all! It started when I was in a car crash when i was 27.
It was low level mainly lower back pain for a long time. Then I had my daughter at 33 and went back to work when she was 4 months old - the trauma of that and her not sleeping gave me a huge flare. So from that point on I would see it improve when I rested (holidays) got in the sun (ditto) and then really work up to a crescendo each winter.
As the joints failed from OA each time I went back to work from my late 40s I felt more and more in pain - but it was, I think, weight gain from being unable to exercise and sitting still for long hours working that just made it finally tip me over the edge.
I am now at 40% of the pain at its
worst - but Saturday, after a drive to Brighton on friday and some rain … could barely move.
Some of this is EDS and some of it is OA, but it is all pain and how we process it. I just gave in, laid down all day and took paracetamol which always sends me to sleep since I starts to take Duloxetine.
I am lucky - but 2 years ago I was going out of my mind and it felt hopeless. So your post really resonated
x
Thank you for your reply. Yes I'm trying to just accept this is how it's going to be, but I'm struggling. If I got better sleep I know that would help. It's just how to get the pain levels down so it isn't interrupted. I even bought a 7cm memory foam mattress topper which is great for everywhere else lol so some benefit, I was using the pregnancy pillow for a while. But this now hurts my neck. I am like the princess and the pea at the moment. But with pillows lol 😆 I have about 5 different ones on the go and I even asked my friend for her pillows I was using when I stayed at hers as they helped me.....at that time. Mine all started last year when I was off work for tennis elbow and rotator cuff insufficiency and I had surgery in September. I think as I was in pain and then went under anaesthesia my nervous system was like, right missy! Time out! My job was extremely stressful as a medical secretary working for 3 consultants! Life trauma. Childhood trauma, developmental trauma so im not surprised and since then it has slowly crept up on me. I am exploring lots of ways to process stored energy and I do somatic work to help regulate my nervous system. But this will takes years of unravelling. I am so glad I found this page ❤️ everyone has been great
I hear you it’s a bloody nightmare when your body won’t let
you sleep!!!
I did the free Curable App intro about reframing pain - it was useful.
other than that I listen to audible books and they send me to sleep and seem to switch off the bit of my brain that pays attention to pain.
just keep trying different things and be kind to yourself this bit is so tough as you feel like you are between a rock and a hard place!!! x
PS I have four pillows
It’s ridiculous - and yes, princess and pea!!
Yes I did that as well. I understand what's happening, but my brain has other ideas lol I don't even have any stimulants to blame! I don't drink at all, I stopped smoking. I've lost weight. I stopped caffeine lol I even did a gluten free. Dairy free. Sugar free. Processed food free diet for 6 weeks and nada!! Getting to sleep is not a problem, my brain just goes ouch better wake you up lol 🙃 I will build a fortress tonight so i can't move. My GP gave me 5 days of sleeping tablets zopiclone and I've used them in the past. But I'm afraid that I will be that zonked out and lie in one position too long and be in more pain when I get up. I am so glad I am bit alone, but I would prefer it of noone was going through this! Right that's me off to chase this elusive sleep lol you have a good rest too xxx
Yes,The Polyvagal system has a lot to answer for.I use Deb Dana Polyvagal cards to remind me of all the things that help.
I hope you find more ballance.
Take care
Gigi
I bought some cards ❤️
Hi there,
Sorry you’re feeling so bad. It’s unlike anything I’ve ever known too.
In my case, I was diagnosed in May after multiple visits to the Drs, suffering cluster headaches (which regularly become migraines), pain (specifically in my right arm, upper spine, left hip and left knee and feet) and chronic fatigue to the point I feel I need to nap after getting up and heading downstairs.
I’ve questioned many times if this is fibro - or if it’s anything else. My right arm pain is so bad I cannot lift my arm out to the side or push it backwards which also causes pain trying to turn in bed with the duvet on and has me struggling to even pull up my trousers. X-ray of shoulder showed nothing, And medications don’t work. So it makes you feel like a fraud as, who has this level of pain and limited range of motion for what most people see as ‘nothing’ still. I do think fibromyalgia has so many negative views - even from healthcare professionals (and I say that as one).
I’ve had to give up my job too, and that hurts like hell after spending so many years training and loving what I did. I’m currently wondering what the future looks like, my pain has increased over the last year or so too. I doubt I’ll ever go back to the same job role, and what other employer will consider someone who has migraines multiple times a week, needs to pace everything they do, can’t walk much, can’t remember things, has constant fatigue? It’s impossible.
So I’m here to say yes, it’s likely you have fibro, and unfortunately you’ll feel similar to most of us, ignored, not believed, left behind. They say pacing, acceptance is the first step, but even that is hard as we still need to ‘keep house’ and live even without the additional stress of working to earn a living.
I send you my best wishes - and just wanted to say you’re not alone.
Thank you. Snap! Lol I am so glad to hear that it's not just me! I can't raise either arm or put them back and also struggle pulling up my trousers! Putting a jacket on is a nightmare as have it in both arms and neck at the moment 😔 and getting dressed in general. I've even had to get zip bra tops as I cant out a bra on now. yes I definitely won't be going back to an office job, I enjoy photography so I might go to college next year to do a course, health permitting. Yes it's so hard as you don't know how you are going to be from one day to the next and it's hard to not get caught up in the pain loop and saying it just keeps getting worse as you just reaffirm it to your brain. I am working on regulating my nervous system and I'm going for TRE therapy today and I'm about to start SSE (safe sound protocol) have a look. I believe that mine has been caused as one trauma/unprocessed stress/emotions too many. Lots of research on it. Dr Howard Schubiner is a great neuroscientist on chronic pain. He has stuff on you tube and I watched a talk with Dr Chatterjee and Dr Howard Schubiner
youtu.be/kYK7utae7Cg?si=u--...
Thank you for your reply. It means a lot
Have a good day!
Trauma is definitely the root cause ! I have no doubt about this. Please keep me posted how the treatment plans go, I’d ve interested to know xx take care
I will do 😊
I think your the first person I've come across who has got cluster headaches on here as I regularly check in on the migraine support page, they are truly awful and extremely painful, they are known as " suicide headaches " the pains are so bad, and I honestly never felt pain like this before, I had different types of medication for these headaches for several months, but eventually was prescribed topiramate which worked for a couple of years, but they came back with a vengeance. I then tried the nerve block injection in the base of my neck 3 times in total, that didn't work, ended up getting sumaptrapin injections and verapamil tablets to keep things at bay, I hope you have successfully got rid of these headaches, kind regards!
Thank you. Sorry you’ve struggled so much. I hope you’re getting some relief too. Luckily sumatriptan works for me, however I have that ‘wiped out’ feeling straight after taking them, which on top of chronic fatigue means I’m pretty much none-functioning on the day I get the migraine. Take care of yourself. X
Sounds like a Flareup to me. Could be the change to colder weather, it always gets me, or it could also have something to do with the menopause. Some folk say that the menopause can really knock you for six if you have other Conditions. I was lucky and had few side- effects, although the fibro did get worse for a while.
Keep yourself warm, avoid draughts and when you excercise, slowly cool down. Some folk like weighted blankets, I haven't tried one yet.
Cheers, Midori
Lol this is one long flare up! Every day I am more sore. I have even tried a 6 week elimination diet. No gluten. Dairy. Sugar. Processed foods. Eggs. Peanuts. Etc and it did nothing. Each day the pain has gradually got worse? We thought it might be hormones last November so I started HRT but that hasn't helped with pain. It is very tiring and I'm sick of being left to my own devices to find out more about it 😔
I agree, except for the information leaflets available from this site, there is little for us, and folk don't understand why we can be all right one minute and almost collapsed next minute.
I find The Spoon Theory is quite good for explaining how the energy goes after a short time. look it up on the Net.
My pains and aches are mainly below the waist; although my left shoulder is painful and stiff sometimes. Plus the start of Arthritis, of course! And Age plays it's part, I'm 76 and still going, after a fashion!
Cheers, Midori
Hello, welcome , fibro throws out so many symptoms for us, pain being one of them, for me personally my neck, shoulder blades ache the most, I get relief when I have a warm soak in the bath, using my hot water bottles at night, the only time my pain is more manageable is when I stop doing things and resting, weather seems too play havoc for some of us, it’s been so wet damp with constant rain it keeps me indoors , but I do not fair so well in the colder months. I’m sending my empathy as a lot of members have had had too give up their jobs. I say day too day and I only book things if it’s say a doctors/dentist appointment , I’ve learned now too say no ,we have too do what is comfortable for us I think, take care , I hope the forum helps xx
Thank you 😊 yes I'm good at saying no now and I just do what's right for me. Infind it hard to just be. I feel like I'm on this continual journey to find a way to reduce my pain. I'm finding it hard to accept this is it. Surely it can ease over time? I'm only a year in. I'm tempted to go private and find out once and for all. Thank you for your reply xx
Your very welcome, im roughly 9 years in diagnosed now CFS/Fibro/Sleep,apnea, it’s life changing for sure , just helpful we get too chat here, we are in this very big club no one wanted too join☹️xx
Have you checked your vitamin and mineral levels, especially D? Low D can cause pain.
Karen
Yes they were low at one point, but I managed to get them back up. Although they probably could be better as I live in Scotland lol 😆 I sat out in the sun this morning for a couple of hours, That was probably it until next May!
Confused
Raspberry Ketones and Fibromyalgia - Warning!
Confused/worried/frustrated.
Confused
Jaw, neck and shoulder pain is horrific 😢 
