Hi, this is for me a very honest heart on the table post. I’m saying it how it is and how I feel which isn’t easy. I’m recently diagnosed with fibromyalgia and I’m really struggling to accept it. I’m ever the sceptic and I’m sure this doesn’t help me. I keep thinking is it just an excuse for ‘they don’t know what is wrong with me’. I’m glad of this forum more than I can say because reading others ailments is helping me to accept the inevitable diagnosis but even then I ask myself if we all have some other major issue causing all of this that being missed.
right now, I have so many issues upon issues upon issues going on and it terrifies me. I’m scared that something in particular in my body is causing this and they’ve not figured what it is yet and my worry is that the longer they’re taking to find it the worse it is getting. I feel this because as the months go by I am becoming more ill. Just writing this has caused me to start sobbing and tears are running down my face. I don’t want pity. Just answers somehow. I know I won’t get them. Or maybe thoughts.
to date I have electric pins and needles everywhere, stabbing pain in muscles, especially right side but now all over. Fumble hands, headaches, brain fog, lack of self care through just not caring about myself to do so, gut issues that feel like I have acid spreading into my every tissue, sleep disturbance and constant awakening throughout, energy depletion and whole body weakness, and now eye Demodex Blepharitis (the only ‘real’ diagnosis I’ve had of an actual thing) that seems to link to extreme ear pain that feels like there should be an infection in there but there is none.
this past fews weeks I have started getting stabbing pains in my heart area but I can’t decide if it’s a possible heart issue or just a stitch, but it moves around and comes and goes in slightly different areas of the same area along with some tightness across the front of my chest. I’m going to call my doc about it today as it’s a bit of a worry and I guess should be checked out.
right now my eyes and ear issues are really dragging me down as I’m physically drained with it. I want to go out and walk in the mountains so desperately but I can’t even contemplate the energy I’d need to do that.
My concentration levels are on the floor, I have a thousand and one things I need to attend to and by the end of a day have achieved very little to nothing. And now I’m asking myself why am I writing all this? Back to my initial question, do I have something going on inside my body that I’m missing that is the key to why this is all happening? And if so how do I find it? That’s what I want. Is this crazy? I’m really not a crazy person. I’m not expecting any answers I guess but it’s helped writing it down. Thank you for reading it and any small thoughts would be so very much appreciated. Strength and love to all.
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hi, I’m sorry you’re feeling so bad. I can definitely identify with your feelings though. I only recently tried to get a definite diagnosis of fibromyalgia because up to then I just had a doctor and a physio vaguely suggest it could be. I went to the docs with the question “tell me what is wrong with me, please rule out anything serious”, but after only a 10 minute phone consultation he confirmed fibromyalgia from my symptoms and prescribed Gabapentin. It is very frustrating because like you I feel like there must be something concrete that can be seen on a test to make me feel this bad. I worry about heart problems or diabetes both of which the doc was somehow able to rule out from talking to me on the phone. I’m trying to just accept the diagnosis and try to make the most of life.
Hi, thank you. Your words mirror my experiences. I think if we can sum up the energy we need, keep pushing if we need those answers. It’s too easy for them to just placate us. I was diagnosed and given amitriptilene and gabapentin but I didn’t feel it was right to take them. I was then given an appointment with the pain clinic. She described something really interesting to me. She shook her head when I answered her question about what meds I had been given. I said I hadn’t taken them. She said ‘good!, because your brain is searching your body for an illness to figure out what is wrong and can’t find a cut or break and therefore sends pain signals out everywhere. If I take pain medicine to dull that, she reckoned the pain would get worse as the brain seeks to overcome them and search harder thus causing worse pain. This shocked me but made perfect sense! I asked her if I could tell my doctor that. She said you don’t have to, because I will! I’m amazed but my gut feeling was right. I’m not suggesting anyone comes off their pain meds without consultation but I would suggest asking the question or seeking out an appointment with a pain clinic to get help and answers.
I had the exact same issue with pain meds! I came off them, and I feel better. I’ve tried pre gab, gabi and ami - i have worse pain on them. My anxiety told me I have the dreaded C and that no one will find it because everything is blamed on Fibro. I had three knee surgeries, two MPFL reconstructions, one of them they left a screw only half way in and that snapped.. I went to Ortho with the pain and lump, was fobbed off as Fibro.. I said nope! You need to check, and there it was a broken screw. I had it removed in January, and since then a huge amount of my pain has subsided, prob because I can walk better meaning my hips and back have stopped being out of alignment. So I relate massively. I just take paracetamol and occasional codeine (im allergic to nsaids)
I’ve managed to walk 10’000 steps daily for past few weeks, maybe the exercise has help with the pain.
Hi, I'm sorry your feeling so low and upset,. I too feel the same, that somehow the gp and specialist has missed something. I have same stinging feelings as if I have needles stuck in my body and when I move it stings and aches, I have tightness in my chest and my back and hips cramp which is just horrid. I worry about my brain fog as my mum has dementia and also my grandmother on my dad's side. My other grandmother had lymphoma cancer, Both my uncles have schitsophrenia and my dad has leukaemia. I feel that my genetics are doomed but the gp and specialist just shake their head at my worry and tell me it's fibromyalgia that I have. I am so tired and have no energy and feel my life is crumbling around me. I just hit the 40 year milestone and couldn't even be bothered celebrating. I suppose we have to put our trust in the professionals instead of worrying and stressing more than we should be. Easier said than done. At least you know your not alone in the way you feel.
Hi, thank you for your thoughts. I’m sorry you are going through this too and at 40. I’m 61 and sometimes wonder how 85 year olds are able to function but I guess maybe they don’t have issues. I feel for you having the worry that your genetics may form your possible outcome but I think each an individual and perhaps how we live our lives, diet, health etc, may possibly bend those rules in our favour. I hope so anyway. I find it hard to just accept the professionals because of some experiences I’ve had with some of them . I’ll push a bit if I need answers. But I’m almost starting to succumb to acceptance as I’m too tired to fight what feels like a losing battle. Not the battle with the illness, but those I would normally go to for help. Having the forum here to check on things does help. I keep telling myself I’m going to put an action plan together to start fighting back, diet, excercise, walking. One day soon… when I have the energy!
Good morning 😊 I am sure there is not many members who have not felt how you feel at some point.
I have had fibro for 40 years and I remember screaming the same thing at my GP. Telling them how wrong they were and how I needed testing and x raying inside and out lol.
Even after every inch of my body got x rayed and I had every blood test known to man done over the years. I still found it hard to accept They had missed something and I was dying. But 40 years on I'm still here.
Anxiety will make everything feel worse. It will also make you feel thing that's not actually occurring.
I have suffered anxiety/panic all my life so know how that can effect the body.
Now if I can be honest. I read you was diagnosed a few years ago is that right? Well take heart. You have not got anything life threatening. If you had they would have found it. Also with out treatment for serious health issuies after so many years you would more than likely be near death doors or even dead by now.
Sorry if that sounds a bit blunt but it is a fact and also please remember fibro is not a teminal illness.
For me personally once I got my anxiety under control I found I was in a better place to deal with my fibro. I learned to take one day at a time and deal with each symptom as it raised its ugly head.
Fibro is not easy to deal with that's for sure. But then no chronic health issue is.
There is life after fibro believe me there is. For me I think its down to a persons frame of mind. I am now a wheelchair user and am been treated for PTSD. Also going for blood tests on Friday for to rule out RA. At one time I would have been like OMG, 😱 and the pain ive had for weeks would have worried me sick.
But the way I think about it now is more positive. I think its probably the worse flare up of my fibro ever. So will think about it more when the results come back. I no longer waste my energy thinking what if.
Gosh I just wrote a book 😂 I dont usually share so much. But I feel for everyone who worries like yourself. And I do understand. Xx
Hello, I differently think a lot of people have thought is there something else going on and it is not all fibro. , you have days energy levels are low and it takes every effort to get out of bed and stay focused for sure. Perhaps a visit back too your doctor and make notes of any new symptom that are going on , I would be honest and say you have not taking the meds , your reasons why ,about your visit too the pain clinic amdcwjat they said. Meds can be very much trial and error , I was put on a different tablet over 5 years ago and it has helped me personally coping with this sometimes horrid condition . Yes it is good too talk here and writing our feelings @thoughts down, if you can get this over too your doctor as well, take care x
Hi I am So sorry you are in the thick of it with your fibro. Fibro does throw up all sorts of weird and wonderful sensations and it can be very alarming but be reassured unlike cancer which can have no symptoms and jump up and kill you fibro just plagues you scares you tortures you even but you carry on. Sounds to me like you are fighting it which is understandable because it is soooo frustrating not to be able to do the things you used to be able to but unless you stop fighting it it will crucify you. I have fibro too and can remember telling my husband I was going (dying) as he stood waiting for the ambulance for my chest pains and nerve sensations , fire and ice, rushing round my body. I was in hospital every 6 weeks for out of control pain and miserable. Gradually I learned to accept I had greater limitations than before and had to pace and work with my body to coax it along. Rest and relaxation is vital. I used to feel so guilty for not being at work but just showering would take an hour and a half of do a bit rest a lot plus help and that is the key.Pacing and recognising when you need to stop and not becoming frustrated. Pushing on just brings a massive kick back flare. Not easy I know. If you can’t go walking as you did try another exercise that assists your fibro like warm water pool therapy. Don’t try to do 50 lengths just move in the water and try and let the gentle exercise calm you. Move a bit rest. Thats the key. Get someone to drive you there and back or the journey will exhaust you before you even get in the pool and rest for the rest of the day afterwards. You can improve your lot with fibro by working with it but its not curable. Diet and exercise is great but baby steps on the exercise front. Our fibro muscles dont repair as fast as other folks so a day at least between exercise sessions is needed maybe more. I found I could pool exercise 3 times a fortnight. twice a week sent me into flare. 20 minutes helped my pain 30 minutes crucified me to exhaustion. Hauling myself out the pool was extra difficult if I was in there too long. My body would feel like it was weighted down with rocks. I would sleep for hours after overdoing things. Balancing fibro is like walking a tight rope. Listen to your body and gradually build up alongside the necessary rest and recovery periods. Re walking get a shooting stick. Walk a bit and then sit and take in the countryside. Walk a bit more. Always go in a circle route so you are actually heading home rather than forward and have to get back after going too far. I used to draw a pic of myself wrapped in barbed wire. This for me was fibre. Stuck in pain and every move whichever way was hazardous and painful and so hard.It is awful but it can be managed. Its easy for me to say chill but if you dont it will only get worse. Do the things that calm you. I crochet, have my meals outside, read in my recliner with a hot wheat bag loose soft clothes and supportive cushions. Only wear a bra when absolutely necessary. Warm wool socks. Whatever makes you feel cosy. It will help your fibro. I also drew a top to toe map re fibro and its companions. We have dry eyes, ( Sica and blepharitis) aching teeth and jaws and ears (probably TMD..tempero mandibular dysfunction) sensitive skin( factor 50 every day) shoulder and neck ache( always wear a scarf and keep everything warm. Get a thera cane and massage those trigger points with anti in flam gels) Always support your neck when travelling or sitting watching tv. Just rest it with a neck support pillow or just a ball of wool behind your head…takes a lot of tension and weight off. We get acid reflux because fibro folks have weak sphincters and we have tummy aches re IBS and joint aches… the myalgia part of fibro. Our legs feel heavy and doing stairs is like climbing a mountain. I have a stair lift now and sing on the way up. far better that getting to the top exhausted I can tell you. Be kind to yourself and find things that comfort and ease your pain. Warm baths and candle light helped me but I had to spend literally thousands on a sit up walk in bath but it is a godsend when I am in flare. Its Hard and awful but it is who we are and we have no choice but to live with it. The choice really is fight it with frustration and get worse and feel miserable or work with it and improve things slowly and gently. I hope you feel better very soon. Re Drs you can tell pretty early on if they have a clue one will say hmmm bit overweight dear and maybe a gym??? Avoid him/her like the plague but the other type says do you have eight or ten pillows to support you in bed and do get fleece bedding it will help your pain to stay warm. Stick with them they understand. Anyway Good luck to you. Don’t despair it can get better. I am 67 and I garden , short walks, warm pool swimming, sing in choirs, crochet so I do have a life and can enjoy it. Hope things improve for you soon. Sending Warm very very gentle Hugs.
hi LilyWhyte, absolutely everything you have just said is how I feel, the fleece on my bed helps me to place my face on the low pillow. The bra issue is shocking , exactly how I feel , if someone had told me before fibromyalgia that this was possible I’d never believe it. There is evidence now, three studies have been done recently I was told by a doctor in the pain clinic. He said they have found in the brains of fibromyalgia people that their pain receptor part of the bran is larger. Also, fibromyalgia sufferers have less morphine receptors, so we don’t enjoy our own endorphins like other people, I can’t remember the third but he did say our pain impulses intensify. We have a shower no bath, I keep asking my hubby for one. I’m craving the warmth. So glad you posted x
Your reply is like you have written it for me, the bra, the reflux, the balancing of pain, the baths, blankets and the things you enjoy to take the edge off. This group is great for making you feel that there are others out there with the same struggles, we're not alone! Thank you for sharing x
Hey there! I'm just in my early 20's and I'm also suffering from the same conditions you wrote there like ear, eye pain, poor gut health, acidity, pain in chest or heart area, lack of concentration, elbow, wrist, knee pain, headache, chronic back pain... lots of pain actually...😃I really don't know what should I do to cure these pain. Though I'm doing yoga, meditation for a month now to get those happy hormones : )
Hi, I think any of us can relate to what you write. But ultimately acceptance is huge. You probably think “Well that’s just stupid” But actually it isn’t. I had the shock of a diabetes diagnosis and then the Fibro diagnosis six months after. That really did knock me personally for six especially as I’ve never been someone who has never suffered with anything before, I didn’t accept that my body can’t and not to worry about not getting something done on that day.
I’ve personally only accepted it (And it is an “it”) since October 22. Had it diagnosed in Jan 2021. In Dec 2022 I was further diagnosed with CFS and Raynaud. Reduced my hours at work in November 2022. Cos I can’t do full time. My advice is do what you can on that particular day, DO NOT worry about what can’t be done, it will happen only on the right day.
Think of one good thing you have every day, If you can stand up and smile then that is good.
I have fibromyalgia and I can relate to this . Every day I am in pain don't ride the bike no more I can not even do all the walking like I use to. I have put on a stone. I have also infamtory arthritis I am on duloxtine and salsvaline.
hi I’ve read your post and laughed! Not to be cruel, but because of the fact I could have written it myself apart from the eye problem. Please try and accept that this horrible illness won’t kill you, and as hard as it is to believe won’t damage your body. The anxiety you are feeling is causing some of your symptoms. I know I’ve been there. Acceptance is a big part of this condition. I found a low dose of pregabalin practically stopped the electric shock pains . I now think of it like our internal thermometer and circuit board is damaged giving distorted messages to our brains. Sometimes I swear at ‘it’ and tell it it won’t beat me. I’m the same age as you having developed Fibro after a combination of a physical injury and I think the menopause. I had all the heart tests known to man! Sharp stabbing pains are very common and not typical of a heart attack, but for peace of mind you could ask for an ecg. Don’t get me wrong, sometimes I go through a bad patch but now know it passes. I’m also a very sceptical, headstrong person and was told by a doctor that to me everything has to be black or white. I thought about that and realised that for now I have to accept grey . I’ve also accepted that friends, doctors and family do not understand, because unless you have the condition you couldn’t possibly. Take care and be strong
I totally understand what the OP has written and I sympathise with her too. I myself often wonder if there is any other "underlying" conditions that certain medical professionals are too quick to declare as fibromyalgia, just becos they would have to dig a lot into, or make an effort to help ye get to the bottom of. I totally get that GP's are under intense pressure and completely overworked, but if they don't show the level of care they are supposed to, then they shouldn't be practising.
I hear all too often that people think/say their GP's just fob them off with the FM excuse. Luckily for me I got a good consultant, unlike other folk I've heard from who just don't feel listened to. I just had him call me on Tuesday, explained the symptoms I have been getting lately, (it's been since the start of covid since I seen him last), and he's now doing more/further investigations with blood tests and scans.
Looking into things myself, I wonder if there is more to it than just the fibro, and if it's to do with side effects of the medications usually prescribed.
I hear a lot of other folk say that they feel a significant improvement in themselves when they come of them, and I know everyone has a varying degree of pain with fibro, but I find myself wondering then how much pain were they actually in when they got diagnosed.
Me myself, I aint no cry baby or a whining type of bloke, but I can tell ye that if other folk are experiencing what I experience on a daily basis in any degree or form, then they are sure as hell suffering big time, cannot be enjoying themselves to any degree, and can't be doing without some major pain relief becos Paracetamol or co-codamol don't cut it in my view.
Anyway, back to the meds and side-effects. I find that my eyesight has taking a serious beating since being diagnosed, and my GP cannot be sure if it's to do with thr fibro, the meds or if it is a natural degeneration of them. Considering I had perfect 20/20 vision before I got diagnosed and started meds like tramadol, gabapentin, amitryptiline etc, I think it has got to do with the fibro or meds. It would be nice if anyone else has noticed the same things since being diagnosed and having 20/20 vision before then. Also, I find that my memory/focus/concentration has gotten worse, my speech is often confused, my limbs don't respond as they should or jerk uncontrollably now n again when I attempt to lift something, and I wonder if maybe even some of this is caused by meds?
I hope I aint coming across like I'm having a whinge or angry becos I aint angry or owt. I just agree with the OP that things need to be explored properly, and noticing that many of these things have started since the meds and suffering from fibro, and not being able to stop taking the meds becos I feel like real crap and that, will my GP, Consultant and me ever know for sure or be able to find out what the causes are of things, or be able to find underlying conditions that I had before even starting the meds or things actually getting worse becos of the fibro.
Hi, sorry to hear you are having a tough time. In all honesty reading your post was like reading about me. I was diagnosed approx 15 years ago and went through lots of various diagnoses for about 5 years before that. It took me about 2 years to actually accept I had fibro. I was in complete denial and fought against it. I then realised as I was getting worse to accept and go with it. Yes I have all the issues you have commented on including blepharitis. I feel you should speak to your medical advisor again about chest pain. I was convinced I was having a heart attack but it was all down to anxiety. I also have other conditions aswell as fibro , gained a lot of weight and fibro totally changed my life. Loss and change is a grieving process that takes time to adjust. Good luck.x
Sending you hugs (all of you actually not just PersonalTAgent!). When I was originally ill, I went to the doctors and just burst into tears. I knew there was something wrong and my main worry was it was cancer. My doctor was lovely and then followed the blood tests, MRI scans, bone density scans etc. At first it was difficult to accept the diagnosis but I've had to as it is not going to go away. I have found that I need to take my amitriptyline so that I can get some sleep, do some sort of exercise every day but also pace myself and if I've overdone it, then I give in and rest. The most difficult part was getting my husband to understand how I was feeling: I might look OK on the outside but inside I felt terrible. I hope your family is supportive. Follow all the advice on here and remember there is always a listening ear - I couldn't have coped without this site when I was diagnosed in March 2020.💗
U sound like how I totally felt at first took over 3 years to tell me fibro. and I'm no better off going to speacialist and today to pain clinic to tell me no meds realy work which i have never santed has not always the best solution .still researching properly basicly . I agree with the statement u put about what they said with our signals and does fight every part of our body I got told and finds somewhere else to go . I donr want them myself but have to work and it's hard doing it when in major pain . . Good luck and keep posting xx
My initial advice would be to try and calm down. I know that's incredibly difficult and I don't mean to be unkind.It's perfectly normal to become depressed and stressed with every thing that's happening to you. You are coping with so much and you're understandibly scared.
But Dr and Specialist Practitioners simply don't hear/listen to us when we are emotional. It's sad, but true.
Have you been tested for any Inflammatory Arthritis? I should imagine that was the first thing they did, but just checking as your symptoms do sound inflammatory.
Regarding your heart pain, it could be any number of things and I could make suggestions from my own experience but I won't. You can't presume anything if you feel something is affecting your heart and don't let your Doc do either.
If they won't send you for tests right away and you can't persuade them to, go to your local emergency room and tell them you have radiating chest pains.
I have austeoarthritis in my spine and other joints I am greatly debilitated with pain and deterioration of my spine.
I've had symptoms of Fibro' since I was 12 years old. I was only diagnosed last year. I am 58!
I also have osteoarthritis in my spine and other joints. I am greatly debilitated with pain from the deterioration of my spine. But since the fibro diagnosis, when I ring to speak to my Doctor, I get redirected to a nurse! Or the Doc's receptionist will fob me off altogether.
I feel as though fibro allows them to attach a red flag to you medical records that pops up when they input your name and says Fibro/hyporchondriac!
I would say, write everything down, it's cathartic if nothing else. Let it all spill out onto the page, how you feel emotionally and physically. Then take all the emotion out. Leave only the facts, the symptoms. Then type it up and email it to your Doctor.
They don't always listen to you, but they have to read if you write to them.
I hope this helps you in some way.
Take care and keep pushing until you're satisfied with the answers. They may not be what you want to hear but at least, it wil help you deal with it.
PersonalTAgent OK first thing, folks usually hop on to say about Costochondritis. Look it up; read all about it. It might explain your weird chest pains? Or not? But worth thinking about before you worry yourself silly. Fibro's tend to get this.
The other thing, like the others are saying, all this worrying is gonna make you feel dreadful and so, maybe you could try to stop fretting over your health and go back to Google to find some nice meditation music or Meditation videos. Youtube have loads of nice ones for free so don't go paying unless you find something you like. Put aside time in your day to get cosy, meditate and hopefully switch off and relax. It is an excellent treatment for most of what ails us and an excellent daily practice to stay healthy and grounded.
Worrying about what is gonna carry us off, really takes away from the life we have left. If you can't stop the worrying, then maybe talk to your GP about your fears? Are you afraid of being ill? dying? both? Is there a reason, apart from your fibro pains? I do believe we can work on our fears. Youtube has so many amazing creators discussing anything we can possibly want to know. On one foray, I chanced upon a lovely and muchly experienced hospice worker who worked with dying patients helping them in those last days. It was so interesting and not morbid like you might think. And so helpful for people who were facing this with a loved one or had just had to face it and had concerns. She was so clever how she could quickly explain and give reassurance. I liked her also for how she could share the science but also the spiritual. Something that tends to get forgotten in our modern world.
What I'm trying to say is there is a lot of info on the Youtube on just about any issue you might have. Whatever trouble we have you can be sure you are not alone and someone has found a way through that might help or just reassure.
Most of us have had very convincing symptoms of nearly everything under the sun. What I learned is being tested is Pants!! Hours out of a day wasted in a miserable hospital setting, being a patient; Trying my patience. So invasive and unpleasant and actually, often undignified and painful; and so boring waiting! And as you are learning, hanging around sitting standing waiting sets off pain, along with the actual testing that sets of pain and setting off pain when you are a fibro is not what you want to be doing!
Most people will say, you should have new symptoms checked just in case, but after that, probably, you need to accept you just have fibro and work on getting yourself an expert in managing your symptoms. Eating well, sleeping well, relaxing, staying relaxed while sitting, working etc. Tension is the fibro enemy.
Hi, I'm glad I found your post because I have so much pain, stiffness, clumsiness and balance problems that it feels like I have forgotten how to walk and have to concentrate hard to take a few steps. I am convinced I have something serious going on like Lupus or MS. I have been going downhill for the last two years and finally had to stop working in January as I can hardly walk, am in constant agonising pain and just want to sleep all the time. I keep thinking the doctors have missed something so I do all I can to diagnose myself, looking up my symptoms and getting several different conditions suggested. My GP is now arranging to send me to a Neurologist at my request as I'm so sure there is something seriously wrong with me that everybody has missed. The way Fibromyalgia has been described in the past makes it seem like it's all in the sufferers head and it's something minor and easily dismissed, not this debilitating syndrome that takes everything from you, everything you ever enjoyed and are no longer able to do.
I was looking forward to my retirement, a chance to go places and do new things and now I'm not able to do either.
hi, Does your doctor do thorough vit blood tests? ie test vitamins B12, folate (b9), vit D, ferritine .And also do full thyroid panel which MUST include FT4, FT3 as well as TSH and anti bodies. My doctor missed the fact I cant fix vitamin D, and that I was folate anaemic. They also missed me being hypothyroid for years. Just fobbing me off with pain killers, anti depressants and PPI, saying maybe it was fybromyalgia. It is still an upward struggle to get nhs labs to do tests in full. You can request a print out of your lab results. I check everything in detail now because I don't feel doctors have the time.
Hey lovely, so sorry you're are having a hard time. I totally get it. I'm 3 years in and it's taken until the few months or so to finally 75% accept I have fibromyalgia ( and only then as I've had SIJ injections, so some of the pain is dulled). I'll continue to search for other diagnosis every time a new issue pops it's head up, but reading everyone's responses on here (and especially yours) make me realise that I really do have it. If not that...we both have something else with the same symptoms.Whatever it is (aswell as down right unfair for us), I've just been trying to cut the top off (reduce slightly) each of the most irritating or painful one at the time. By only distraction at times.
The best thing I did was to read about the spoon theory, I have always been a hands-on and can-do type, so I have been through some pure frustration and downright crying episodes...at work, home, lost friends, pushed friends away, all the meds, tests, scans, steroids injections, exercise types, sleeping and finally a wheelchair for a while.
Then I gave in and decided I was going to find out what my limits were (my no. of spoons), by starting with reducing things I was doing until the pain reduced. I was reduced to doing next to nothing.
Then I added in v.light exercise (although it hurt, it took my mind off the same daily pain I was getting, and gradually helped more and more as I was doing something that I had control of. (That helped me emotionally, being in control of something!), gave away jobs in the house that I would normally do, delegated more at work, thought about how to make every task I did easier on myself.
It's without doubt been a journey.
I'm allergic to nsaids also (someone else replied saying they are too, which is interesting).
I have Raynaud's & get frostbite so easily.
My left elbow and left big toe hurt often. My right thigh stabs now and again and I feel like someone is grabbing at my nerves all over my body.
I have a much shorter temper (but working on this )
My skin hurts & my knees feel weak.
My muscles feel tight around my hips, groin and sides of legs.
I have osteoarthritis in my L4 & L5,and Sac. Joint dysfunction, so have spinal injections about every 6-7mths,
When I have these I can then move off gabapentin...but all the things that I thought were because if the meds are still there...twitching muscles, really dry ears & eyes, twitching diaphragm, brain fog, acid reflux, gasey stomach...noise is a problem for me some days just people talking hurts!
I've learnt to be a bit kinder to myself, just a bit.
And it helps, without doubt to have people around you who understand, if you don't have them I'd suggest trying to find them. Feel free to get in touch if you want to call/chat. It really does help when people do 'get-it'. Or find a local group (?)
I was pleased that one of my doctors I saw recently was a little more straight-talking with me, more black and white. You have fibromyalgia, you need to stand up and find your own best-path through she said. Take charge the best way for you.
Baths (not too hot)
Gabapentin before bed (for sleep)
Yoga & light weights (for movement) 20mins max
Rest as often as possible
Try and sleep well
I've reduced my days at work (just stopped beating myself up about this)
I save any spare money for massages
And mostly try and do things for today that I enjoy (& not think too much about the future)
Split all housework up into different days
Get help for difficult or ones you don't like)
Keep sugar low (I'm not good with alcohol or sugar, or coffee/chocolate)
Drink more water (I like hot water now)
...but I'm not giving them up, so I try less if I can.
I get bad days and ok days, but I try to keep positive now, which for years has been impossible.
I could keep writing and am sorry for the essay(!), but hoping that some of the things that were good/easing for me will be for you too xx
Take care my lovely and if you ever want to chat or just have a shoulder do get in touch with me xxx
Your experience is very relatable. I found the diagnosis - and the consultant stating so very bluntly that of all rheumatic conditions, fibro is the most disabling in his experience - very hard to cope with. The loss of control over your day to day life, the loss of freedom and independence, the loss of your ‘old’ healthy self. My life has changed so dramatically. I’ve tried every form of therapy suggested to me, including all the meds, but the single biggest thing that helped was counselling. I found an amazing counsellor I began to trust and open up to and I saw him weekly for a year. I honestly think I’d have spiralled into the abyss if it weren’t for him. It’s a travesty fibro diagnoses don’t come with emotional support as standard… it is a hard, hard fight and often a long and convoluted road to diagnosis. I wish you all the best and I hope you find some solace and support in sharing x
Thank you so much. Your words are very comforting. The loss of our ‘old healthy self’, that description hits the nail on the head. I hate that I’ve lost the old me and I want me back.
I have to say this forum is helping me. I can’t do counselling at all. I’ve tried a few different times and the just don’t work for me. It may have been I had the wrong people but I couldn’t keep doing it searching for the right ones. I’ve happily accepted it’s not for me but I’m glad it helps many, and you. I also like to try and practice mindfulness, especially teachings of a Vietnamese Buddhist monk called Thich Nhat Hahn. His words and practice give me a lot of strength.
I’m so sorry you’re struggling. I get it, I sometimes get a kind of despair feeling wash over me. Then I try and what I call ‘wake myself’ out of that feeling. But can you not demand you are seen? I’m not sure what part of the country you are in but no person should be refused if you are really struggling and need to see someone. I think if I ever felt I wasn’t being seen I’d take myself off to A&E, if I felt that bad that is.
I’m so sorry you’ve had this that number of years too. That’s such a long time and I completely understand why you feel you’re struggling. It’s no wonder. But you have a right to see a doctor. I’d push and demand it if you can. I hope this forum helps. Having somewhere to chat and learn from others is helping me. Take care
welcome to fibromyalgia. I have all the same symptoms, but not the eyes and ears. To strip and make my bed in one day, is about all I can manage. I would love to be able to go for walks, but it’s not possible. The pain would be unbearable, and would need a sleep before managing to walk home again. We are all in the same boat, once fibromyalgia is diagnosed you won’t be able to get any other diagnosis as they don’t bother looking for anything else.
I am absolutely flabbergasted and shocked at the number of replies and the fact throughout, many feel the same whilst some are almost wearily accepting the fate we have been dealt and understandably so.
I don’t think I’ll ever not keep asking questions of the doctors and pushing for better answers and treatment if needed. There has already come a point where I guess I know what my ongoing symptoms are this far and what’s the point of keeping going back to report that the same thing is going on. I won’t and I can understand that’s pointless too, but if I feel I need more advice about it I will do it. Whether they like it or not.
I will say one thing, although I’ll advise caution here but I wouldn’t want anyone to stop or lower their meds, but I’m reading that some are on pain meds and it doesn’t help or the pain is getting worse.
I was at an initial appointment at a pain clinic a few months back and was told ‘not’ to take the amitriptiline or pregablin I was offered from my gp as they would make my pain worse and possibly permanent. Her reasoning was that my brain knows something is wrong somewhere but can’t find it so it sends pain signals everywhere. Hence the all over random electric type shocks and stabbing pains. She said if I took those meds they would dull the pain but the brain would then have to work twice as hard to send me ‘warnings’ something was wrong and hence the pain would intensify.
Could it be worth you asking your GP this question if this affects you? Just a thought but it could maybe make a difference to someone here. So at the minute I’m just accepting the pains, until I find out what she has in store with me at my next (first) proper appointment. I think it’ll be going down the road of learning to live with it though. I guess doing so depends on how severe things get. I hope to god not much more. I’ll try and answer individually when I can. But thanks so much to everyone for taking the time to reply. Everyone has made me feel this isn’t imaginary and that I’m not the only one.
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More Myofascial than fibro in neck causing issues - Bruxism
New here. First gp visit after official diagnosis
Got an Ear infection so got antibiotics :-(
Hello everyone Iam back!
So tired ,my tired is tired 💤 
