Newly diagnosed still not exactly sure what fibromyalgia is! Can anyone describe what they actually feel with this condition.like really feel. Im not talking about the pain here and there. As i know i feel anxiety, fear, confusion, pain. How do i know what is caused by fibromyalgia and what is not. I have gained an anxiety where im constantly feel i have something seriously wrong. I feel im being over looked by doctors and i may indeed have a serious condition where i may die. I know it sounds so dramatic but im driving myself crazy i feel im really giving up Does anyone else experience this? Currently i have ear pain, and is inflammed. Slight jaw pain comes amd goes either side. Rib pain. Back pain. Weak hands, stiff neck,hip pain. stomach pains A feel of light headedness like im not really in the room extreme tiredness regardless of sleeping 8-9 hours a night i have been feeling this for around 3weeks now it comes and goes time to time its very hard to describe how i feel and not many people understand. its completely different to how i felt 18months ago and i am really worried Does anyone else have this? Is your pain constantly in the same areas? Does it change? Does it come and go? Thank you
How do you really feel : Newly... - Fibromyalgia Acti...
How do you really feel
Hi TeeRee2What you describe is exactly how I felt before I was diagnosed. I quite literally thought I was going mad or like you say going to die because nobody else felt like me. The random shooting, stabbing, searing, aching pain. The anxiety, the tiredness, stiffness in various body parts, feeling split second dizziness, sore feet and hands, ibs, etc. etc. your life is now sadly different like it is for so many of us with this cruel illness. When you reach the acceptance stage you may find that the anxiety calms down and you donβt panic as much. I find a low dose pregabalin just takes the edge off the symptoms for me, but finding something that works for you is trial and error. Take care x
It's very difficult to isolate exactly what the pain feels like as it comes in different forms for me.
I went for over a year with a torn rotator cuff muscle without getting it looked at because I'd dismissed it as "just my fibromyalgia".
When not having a flare up I describe the background pain and fatigue as "like having flu without the cold symptoms."
Unfortunately people say "Oh, not so bad then.' to which my only response is "I guess you have never had full blown flu then."
Flare ups come in various forms and intensities.
Sometimes it feels like I'm having boiling water poured on me, intense aching in my limbs that stop me from walking or even raising my arms sometimes.
I also get shooting pains starting in my back and travelling to my extremities.
I also get pains in my fingers and toes that feels like I've been hit by a hammer.
Sometimes all the pains come at once and I'm bed bound I usually describe it as being run over by a bus and the driver has then reversed back over me, doused me in petrol and set me on fire.
'the background pain feels like flu without the cold symptoms' thats EXACTLY it! Wow you have literally hit the nail on the head. Ive always struggled to explain this. Word for word my mouth dropped my head has been so mushed up for the past few weeks i can never get anything across my words and thoughts are scrambled and sometimes i do not make sense or do not know how to get my point across but you have just done that for me. I am so sorry you are having to go through this it is awful isn't it. Thank you so much foryour time to respond. stay well take care
Hi Tee Ree, what your saying sounds normal to me. Prior to diagnosis I wasn't sure if I was losing it, every day was different and to be frank if they'd said it's a brain tumor I wouldn't have batted an eyelid! The pain alone was driving me nuts. But everyone is different. Ear inflammation from infection can also make the dizzyness worse perhaps get it checked out at the GP? My high BP can cause this too so I think a constant elimination procedure helps. The upside for me was being diagnosed, as all problems can now be looked into, directly in relation to fibromyalgia. Ive found taking each day one at a time and managing whatevers worse first and going down the list useful. If I'm too tired I rest/sleep and try again. Some days you win, some you don't, but it's better than prediagnosis when I didn't haven't got a clue what I was dealing with. I hope you make use of this platform as I did to try to understand IT a bit better, not feel like your the only one on the planet with it and pick up new self management tips, such as rest and relax, nutrition etc. Eating and getting fresh air somehow seems more important. Good luck Tee Ree, I do hope you are having a better day today. Remember Rome wasn't built in a day and be kind to yourself always.
I completely understand this thank you. When the hospital done my first ct scan i was sure it was a brain tumor/anerism then when they decided to do a second i was sure it was then i had an mri i was really expecting something but thankfully nothing. They then referred me to university college l0ndon hospital neurologists Im still yet to hear back. Numerous blood tests and yet no resultNow ive finally beem diagnosed with something maybe my mind will ease. I am just so use to expecting the worst with no result. I havent processed it all yet and need to learn about this condition and really need to learn to know myself. Thank you again for the response stay well take care.
I am so sorry to hear about your suffering. I am afraid what you describe, sound very much like what we feel. It sounds like fibromyalgia, I am afraid. The pain, constant exhaustion, the lack of understanding from medical profession, sound all very familiar.
I have been suffering with fibromyalgia for several years and over the years I have also wasted much time following bad advice given by medical professionals, which often made my fibromyalgia worse, rather than better. Like for example that doing regular exercise, will make me feel better. So, I have tried the mild exercises as advised, on several occasions, but every time this just caused new and longer flare ups for me.
The fact is, that the more I rest, the better I can function. It works something like this: long rest, like one, two hours, and about 15 minutes of simple household chores, followed by another hour, or so, of rest, and so it goes. Towards end of the day I am usually finished , exhausted by mid afternoon, but at least I can take care of some basics at home. But the longer I rest, the stronger I feel. Some days I can do a little more, sometimes less, but I never push myself anymore because it makes me more unwell.
The same is true about cognitive behaviour therapy, which is often advised by doctors. I have tried it, and it was disastrous for me. The constant pressure to meet various CB goals , caused me so much stress, that I got worse flare ups, so I began to dread every session. There are some other forms of talking therapies which can be useful, like how to deal and avoid stress for example. and they could be of help.
Perhaps exercise and CB works for some people, it would be good to know, but it had definitely opposite effect for me. So, be kind to yourself, listen to your body and try to work out, what works for you.
For example, for me the best "painkiller" and relaxation is a long soak in the warm, but never very hot, bath. But you must check with your doctor before you try, in case you have any heart, or other health issues.
You will learn to deal with this condition, we all had to, but it is important to get few kind and supportive friends and family and explain to them what you are dealing with, do not be proud to ask for help, when you need to. It is also important to distance yourself from any unkind people who are not true friends, you will need too look after yourself and you do not need negativity.
Talking to people who suffer from fibromyalgia, helped me most,as they understand and have lots of knowledge and empathy,
That was a really kind response thank you, Really made me feel at ease. I will definitely take up your 'painkiller' when possible haha thank you its nice to know i am not alone although perhaps i always knew i wouldnt of been its just taken its toll on me and hopefully i can meet/talk with fellow sufferers. Again thank you.
Hi there Arnika - like the name 
- I very much understand what you're saying here about having to rest much more than doing things. Thankfully, rest for me includes typing (but not talking) and short exercises or stretches. Also I don't have to rest as long after short exercises than after housework. I often need to keep both down to under 10 or even under 3 minutes, but more regularly, like once an hour. I can increase both by task-swiching, so it taxes different parts of my body. That way I've managed to get my "30" different kinds of exercises (incl. breathing, & Yoga Nidra to help or substitute sleep) up to even 5h if I feel it's necessary, usually 1-2h per day/night.
CTB: The talk therapy I do at the moment I wouldn't directly call CBT, altho I've done loads of that pre-fibro. For me it depends very much on the psychologist, and I tried 3 before I remembered one I'd been to years ago, and she had the right type of understanding.
Again, I get what went wrong In your case. Whenever it caused pressure or stress (pre-fibro) we focused on that instead of on the goal and sorted it out, that's in my understanding also what is supposed to happen, so I wonder if your therapist didn't see that or whether they whittled it down to the B = behaviour part and neglected the C = cognitive part? Also we are meant to choose our goals together and not get them pressured upon us. Also, when goals are gathered and listed, they should be ordered how hard or easy they appear to us (which can then be corrected while they are being done). So we may choose to start in the middle, at 50%, if we are feeling pretty good, but if we realize that either 50% is too hard or it is actually harder than 50%, then we can put it aside or break it down into smaller bits first. This all doesn't seem to have been done in your case. One problem can become if we have a personality like praps pre-fibro that likes to push-thru and get things done, then we may overdo it and not want to admit it. Then the learning process is to start admitting our feelings, i.e. the pressure, the stress, the dreading... and this is even much more important and takes us a lot further, because it is an example for all of our life..... Get what I mean?
Hi JayCeon,
Thank you very much for your response, and your suggestions. You make a very important point that we each respond differently, and that our personality from "before" should be taken into account when deciding our treatments.
Perhaps I will explain that I was mentioning CBT because it is now so commonly used, as a fix-all remedy for all sorts of problems. I tried it, twice for different medical problems, just to please my doctor but it was useless for variety of reason, it just did not work for me. There are other forms of talking therapies that were more useful, and I benefited from them , but none made my pain any less.
Over the years of suffering from long term conditions, I have found that the less doctors know about any particular condition, the more they try to suggest that it is your own fault, and if only you do this exercise, or buy yourself a dog, or spend more money on some new alternative treatment (all these goals in CBT) your pain will go away, This are just distractions, not solutions. and so this is why I do not see any point in trying all these CBT type goals. I want doctors to concentrate on medical solutions, or honestly admit that they have no idea how to treat us.
Pushing myself is about the worse thing I can do, But I can, and do some gentle stretching exercises, which help a lot with stiffness, and and therefore relieves some of the pain. At times I can walk longer distances, at other times I can barely make it across the room. There is absolutely no regular pattern to any of this. This is totally unpredictable, too. I have to make most of those better days, and be gentle with my body when it refuses to work. I listen to my body, this is the only way I can function at all.
I think we have found our own way of dealing with this condition in the end.
Thank you very much for taking trouble responding, I appreciate it very much.
The way you've seen CBT used seems pointless and destructive to me, I agree. But I don't think actually think it's the method, I think it's the practitioner and the agenda of fix-all remedy. What it should be used for and is used for is for coping, management, reframing certain ways of seeing things. But like you say definitely not that the pain actually gets less or goes away, that's naive wishful thinking on their part.
Same here, when people even hint that pushing myself may be good for me, I explain that was my mindset before my body just stopped and smashed me to the floor.
So not sure if you're agreeing with me, but I'm definitely basically agreeing with you!
Hi TeeRee, I remember when I was first ill and couldn't understand what was happening with my body and mind. I was panicked by the pain. For most of us we have flare ups where the pain and other symptoms (fatigue, brain fog, feeling unwell etc) are much worse and where we need more rest. I have learned much on this site and it has helped me to improve my situation. And just being able to talk to people who understand what you are going through and who are so lovely, has been such a gift. Welcome and I hope you too benefit from being on here π€
Did your symptoms come on all of a sudden? With mine i remember not 'feeling right' in 2017 after my second child always trouble with my back and body feeling bruised, tiredness.. around august/september last year my skin became so itchy, i was having heart palpitations, extreme exhaustion, migraines stiffness.. And from then It has just never gotten better. The comments already are just so lovely and reassuring . I do not remember how i came across this forum but so glad i did. Thank you for your response. Stay well take care.
Aww, bless you TeeRee, looking back, my symptoms came on gradually. It was about 12 years ago and I was on holiday with my husband and adult daughter. I noticed my legs and ankles felt weak and I didn't have the strength to finish our walk.
Over a period of months I kept getting weakness and tingling in my legs until I was in York with my husband and suddenly I couldn't walk! It was so scary. I ended up so exhausted I didn't have the energy to speak. I was diagnosed with chronic fatigue at that time and irritable bowel syndrome.
I also suffered with depression and anxiety. The next thing that happened was severe abdominal pain, which the consultant I was reffered to thought was chrones disease. Investigations were negative for any organic disease and I was subsequently diagnosed with chronic pain.
The fibromyalgia started about 2011, with terrible nerve pain all over my body and brain fog. I thought I was losing my mind. Fortunately my doctor recognised the symptoms and prescribed Gabapentin and Tramadol. I remember getting home, taking the medication and falling onto my bed.
The recent development started in January when my dad died and I experienced months of narcissistic abuse from my sister. I had severe pain in my neck, shoulders, upper spine, hips and lower spine. This, with the nerve pain was absolutely overwhelming.
My illness was made harder to cope with by the response of other people, including family and friends. Because my flare up was really bad. My daughter, who was staying with us and my husband were totally able to see and realise how ill this thing made me.
But the best thing was coming on here. Take care of yourself and always listen to your body. It will tell you what you need π€
I am sorry you had to write all of that i hope your fingers are not aching.
I am so sorry you have had to go through all of that, made me quite e emotional. And reallly hit home with me from similar experiences of my own. Just from a few comments and reading some posts i believe this will help massively physically amd mentally stronger in general . I really do wish you well thank you so much for sharing with me. Take care all the best for your journey
Aww, you're welcome TeeRee. If my writing helps at all, I would write all day long. I'm sure as you say, that you will be helped and supported massively by all the great fibromyalgia warriors here π
Hey TeeRee2It sounds very scary what you have been feeling. The trouble with Fibro is its such an array of symptoms and its so all consuming , I'm not saying this to scare you but once you know what's what and somehow get used to the pain, feelings etc that comes with Fibro you will in turn stop panicking and having waves of anxiety which all in itself can make the symptoms worse as its so stressed related too. So you WILL begin to get to grips with it and you WILL work your life around Fibro and learn how to cope and what works for you to live the best you can.
So don't be hard on yourself for getting into a mess about it its totally understandable.
So take care and I'm sure many on here will give you their thoughts and help.
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Thank you, I am also new to being diagnosed with Fibromyalgia, like you TeeRee, Iβm amazed at the word for word description of how I feel. It helps to know there are people who understand and support us. Hopefully, when we get on top of how we feel, we too can help others who come along with questions. Thank you again for your help and the reassurance that Iβm not making it all up. π
Hi TeeRee2 - love your questions, and lots of good responses, I hope you can also do with my late take on it:
Dead right, it's not just about all the pain here and there - "local pains" I call them, and have got them 95% under control (mainly lots of various kinds of PT, esp. acupressure & stretches, plus supps), same with my IBS (strict elimination diet). But I was still only able to do 35% of the activities I used to be able to, like work. Now with an added condition I'm struggling from mostly 10 to sometimes 30%. Fibro is about much more than local pains, it's about things like an overall severe fluey Ache, feeling (in my case strong and at the same time) fatigued, not ever getting proper sleep, sensing and thinking too much or too little... I've analyzed so much, distinguished 11 types of fatigue, and still I sometimes get sensations which are so hard to put into words.
I'd got my anxiety under control with CBT, relaxation and mindfulness long before fibro, very useful, and wasn't that shocked about the diagnosis, it was my basic inkling. More like a week of bewilderment, it similar to you saying "confusion". Same half a year later when a severe blood fat problem was found without anyone really looking for it. And then looking to the future, what I can do about it.
I don't think you got answered "How do i know what is caused by fibromyalgia and what is not"? Some say ask docs, if they can't find anything then it's fibro. I disagree thoroughly. I say it doesn't make a difference if it is caused by fibro or not, it's much more important to analyze each symptom, hunt for the triggers, learn what can alleviate or even prevent each.
Even after my diagnosis confirming my hunch, I wasn't satisfied, altogether 50 docs helped me exclude loads of alternatives. My oversensitivities implied something autoimmune or that my fibro is an autoimmune type or something. Now my CoV-jabs triggered MCAS which explains a lot of that, not autoimmune, but the immune system going berzerk. But is my fibro part of MCAS or the other way round - it doesn't matter, the diagnosis points to treatments that others find helpful, I try all of them (>100) and some help a bit.
Jaw pain? Yep, started 5 years ago, Β΄pre-fibro. Couldn't find anything, so put it down to trigeminal, psychosomatic and fibro. Turns out it's probably a combination of 8 reasons, but a big inflammation developed which I'm still fighting with supps. So I never put anything fully down to fibro. I know several things to do for the jaw pain, for ear, rib, back, hands, neck, hip, thighs, stomach, gut, for all of them I have at least 3-5 treatments each. Some people say the pain jumps around. But they're all connected and influence and add up to one another....
That help at all?
Hello. Thank you for the reply. Very relatable. I am currently waiting for my diagnosis to be sent to my gp so they can refer me for cbt hoping that will help. Its just a case of having to wait it out and ive found thats with any 'treatment' athat has been offered and ive been waiting for a neurologist appointment since october. I also have been seen by many doctors, consultants, specialist and they also have ruled lots of things out ranging from cancer to tumors to ms etc.. Funny enough i visited the gp today about my ongoing (2months) ear pain and they told me everything appears normal however when i attended a couple of weeks ago with the same problem they told me it was inflammed and blocked.. I dont know weather im coming or going in these places.. I have also recently experienced after months of jaw pain sudden lesions in the mouth all sorts going on and they can not be explained i again am waiting for my 3rd biopsy to be taken.. To me it feels i am just now waiting for something serious to come up and my mind sometimes can not cope with it all. My head feels it is going to pop.
May i ask what supplements you take if any and what treatments.
Yeah, sure: I've tried about 60 supps, didn't tolerate 10, was on 25-30 for fibro, then lipids and jaw inflammation and finally MCAS made me adjust them a bit, but still on around 30.
Basic supps based on lower levels would be vit. D3 (with K2) and B12 (but not cyano-cobalamin), also selenium, zinc (and copper since MCAS) , altho I don't sense them improving anything. Similarly with magnesium malate and glycinate. Wasn't getting any help for sleep from CBD and melatonin, rather severe harm. But then got on to the amino acids - GABA, glutamine, theanine and carnitine, which were game changers - fast strong effects in several areas, nothing like a cure, but much better on low level and better quality of life. But a science in itself. Additionally to GABA passiflora in overdose helps me sleep a bit better without zombifying me, so those are my main ones. B6 as P5P, ginkgo, Ξ©3, PQQ, CoQ10, quercetin, Resveratrol, Rhodiola and SAM-e. NAC was good, but started harming when I got the MCAS, the enzymes NADH & Serrapeptase only worked a few times. Ribose gives a bit of sugary energy, but not worth the while,. If you'd like more details, just ask...
Treatments: Originally whole body cryotherapy, then 1.5 years expert acupressure, Wim Hof breathing - still quite often, cold showers always, like I said stretches, back yoga, breathing and self-acupressure. Acupuncture kept harming me, but my 3rd stint with Chinese acupuncture (22 sessions to date) seems to be doing a bit for energy, but not consistently and unbalances my system, so I have to work with the supps and relaxation to balance it out....
That help any?
I feel grateful for one fact about fibromyalgia. Of all painful and debilitating chronic health conditions that have no known cure yet, fibromyalgia is probably the least lethal of them all. We got to find silver lining somewhere and in fact, what doesn't kill you forces you to be stronger and live longer seems to be the natural prognosis of fibromyalgia. Moreover, the symptoms come and go so in essence, the patients get to play a part in the recovery and remission.
Feel like no one understands!
Tingling legs
What do you say?
how do you get the help you need?
Do any medications help dial down the pain?
