I started off with all the pain and aching in my neck,shoulders, legs, arms etc. As that wore me down I developed ibs symptoms alternate diarrhoea and constipation. I have TMJ problems with clenching my jaw, tinnitus, lightheadedness, and horrible, horrible nausea.
I'm asking the question , because the pain brings you down, and the slightest deviation of another symptom starts you worrying and then you are off on a rollercoaster ride of misery and worry.
Can anyone relate to this? Do you have similar symptoms?
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Funkyfaerie
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I definitely think any unexpected issues or sudden emergencies or stress can suddenly make your symptoms, very bad at the blink of an eye.
Yes. When the pain cranks up, or I'm more fatigued than normal, if I start to think about all the things I have to do --- even things weeks in the future--- I start to feel overwhelmed. I find myself saying out loud I can't cope. I have to force myself to stop thinking, live in the moment, to the point of saying to myself I'm sitting at home, the dogs are fine, my daughter's fine, her kids are ok, just repeating everything at the moment is ok. I suppose it's my version of mindfulness, but it stops that runaway rollercoaster feeling.
I do think one goes hand in hand with the other, a viscious circle, worry about how we,ll cope if we dont work, I know i did 2.5 years ago when I took early retirement,it was a stressful time, being a theatre nurse we did not have regular meal times-if a patient is found to have more complications than first diagnosed we had to carry on the procedure. working different shifts, going to bed late then up early for next shift, working extra shifts to make ends meet, not sleeping becuase of pain, not being able to take meds at regular intervals, all these things cause stress and anxiety, i still have it now being retired-dreading the brown envelopes from DWP dropping on my doormat, trying to sort out mistakes, fighting my corner to stay on PIP--does this all sound familiar? As it is POPPY WEEK I listen to the plight of many servicemen left with PTSD and not cared for -its scandalous how our government dont look after the sick and needy.
No offence taken,,nurse Gladys Emanuel is a character on a famous tv programme with David Jason and late Ronnie barker,she was the district nurse who lived across the road from their corner shop.it was called Open all hours ..I,m a retired nurse and that was my nickname at work
yes absolutely, i started with liver pain and tingling through the right side of my head. this was 2005 and since then i have developed over 40 symptoms. depression, anxiety and panic attacks are part ot the problem. there are 63 different symptoms which you can look up and compare. it took 4 or 5 different consultants to finally figure it out for me. it has made me feel so alone. only a handful of people seem to believe but im now trying this forum and already have recieved lots of love and empathy just in one day.
May I ask you what some of your symptoms are/were?
Mine change from week to week, and then back again. If I get a good day, I am more surprised than I can enjoy it , as I wonder what the next day will bring....
hi, Funkyfaerie, its the same with me. you never know what each day will bring, but you kind of get used to it. try to enjoy the good days as much as you can. its bewildering i know. the symptoms vary too. i get very depressed, severe anxiety, panic attacks with mood swings. i cant think straight on bad days. my memory suffers and can struggle to communicate. i get poor circulation, numbness, pins and needles, palpitations and a severe central chest pain which i thought was a heart attack at first (even called an ambulance the first time i had it). and, obviously severe pain in my joints. really bad fatigue, tinnitus and aversions to loud noise, brightness, some medications and alcohol. insomnia, night sweats, restless leg syndrome and muscle spasms. ive just had some more blood tests and was told im bordering on being diabetic. thats what i can think off the top of my head. i dont usually suffer with all these symptoms together thankfully. whats so frustrating is that on my good days i can do most things a normal person does, hence why theres so much doubt and disbelief in g.ps, e.s.a, etc. i hope this helped you to understand a little more about what we are dealing with. all the best to you, mark.
Like you say, do t get all my symptoms every day. That's what's so confusing.
I do get ibs too though.
Think I must be wired all the time.
Just want to be normal, guess we've got to stop thinking and worrying, your every day person doesn't do that, they just get up and get on with their day!
i understand how you feel funkyfaerie, i try to go to the woods as much as possible and it really helps my mind while im there. i dont know if you could do the same, but i recommend it if you can. even got stuff for making tea and cooking haha. i will check out dr mandell so thanks for that info. keep fighting friend.
I get all the above. After 40 years struggling I am now worn out. Two daughters can't understand or accept just how ill I am. They seem to think keeping me busy is the answer. I think the fact I have pushed myself over the years, to live as normal a life as possible, and tried to put a smile on my face, has been counter productive. Tried just about everything, pills, acupuncture, physio, hypnotherapy, relaxation courses. None work and I can't tolerate the side effects anyway. Husband just diagnosed with dementia and he is already disabled. I'm not sleeping well, having horrendous nightmares and convinced the constant head pain must be more than anxiety. No-one to turn to and I am now feeling very depressed.
I am so sorry to hear how bad you are feeling, and what you are going through at the moment. It's hard enough coping g with your own worries, let alo e having g to care for someone else.
I have only been like this for 5 years , and sometimes I think, well if I had something really bad wro g with me, I wouldn't be here now, it sounds positive, but doesn't help me at all.
For me they seem to, although for me it is episodic. I am currently having a really bad time with bouts of anxiety/panic - they can last days then just disappear, only to return equally unexpectedly.
Just all round really, I get the muscle pain in neck shoulders, back, legs, arms...randomly, the back pain makes me nauseous, the nausea makes me panic, the panic makes me lightheaded, that makes me think I'll pass out. All this churns my stomach and I'll get diarrhoea, then that will scare me so I try not to go and then I get constipation, and if that gets bad I might get some reflux, if I taste that in my mouth I feel nauseous again !
It it all stems from the sickly ache in my muscles.
I sound like a raving Looney, don't I? :-). I'm not, I'm worn down every day by this. I think if I perhaps could have a good cry, I might feel better, but I can't, I'm too busy coping.
Hi Funkyfaerie. Well, I get a whole range of symptoms although I should say that I have a number of conditions, including Lupus. Originally I was diagnosed with CFS/M.E., then a decade later I was told Lupus and other stuff, including genetic. Now my thinking and that of my GP and, I think, the rheumatologist is that there is indeed something of the M.E. or Fibro ilk going on. Interesting sometimes I have periods where fatigue is predominant and pain just a minor or even fairly non existent thing. Then the 'coin flips' and I am racked with pain and less fatigue; I find this intriguing and most odd. My pain can be anywhere but it usually always includes the neck, shoulders, lower back and often right side of my head and jaw, plus wherever else it has decided to enjoy itself. Other Fibro/M.E. symptoms that I get include: sleep onset issues; mood/anxiety issues; IBS type symptoms, plus sometimes pronounced nausea; sound sensitive; cognitive/brain fog issues; muscle spasms; food and alcohol intolerances; chest pain. And more. Of course, some of these can go with things like Lupus, too, so it can be hard to know what is causing a symptom/s and what to take for it (if there is anything to be taken). I have found improvement in sleep issues and whirling mind now that I take Pregabalin an hour prior to bed. For pain, it's a case of 'suck it and see' - some days Paracetamol does the trick, other days I need Pregabalin. I use anti spasmodics for the bowel but increasingly these are not very effective. Occasionally I use Diazepam for anxiety and it also helps my IBS. Anti emetics. Plus other drugs for Lupus and other conditions. I don't know about you but things are so rushed on the NHS that there is no time to really discuss any of this and so the fine-tuning, such as it is!, is down to me.
What a lot of symptoms, just like me really and nothing helps. I sometimes take pain killers, but I don't know why I bother. I sit with a hot water bottle on my back....but all that I do only gives me respite for a while. All of this makes me anxious, nauseous and miserable.
I also am affected by my stomach and I tend to swallow a lot of air, due to being anxious I suppose, that makes me feel nauseous and odd, even needing to go to the loo makes me feel funny now...it seems to be getting out of hand.
I did see a guy on youtube that said he cured his fibromyalgia by juicing, and I'm sure it works, but you've got to have a lot of will power to do that.
The guys name is Marc, that's all I can remember, but if you put it in YouTube with fibromyalgia you should find him, he is interesting to listen too, very down to earth and amusing.
I think If I had someone to talk to about this it might help, as my family are bored with it or don't believe it.
hi mrs mouse, your the first person ive heard mention about the right side of your head. that was the first thing that happened to me. do you feel like a tingling wave happens too? also the chest pain, is it central? i thought it was a heart attack first time. even called an ambulance and had tests on my heart. i have to lay down flat on my back usually for about 10 minutes before it eases, (scary). my dr gave me dihydrocodeine for 10 years and gave me a terrible addiction to add to the misery so now i have to be careful what i take, i.e. no sleeping tablets or calming tablets. i try to go into the woods as much as i can and it really helps the mind for a short while. i cant wait until they can diagnose this condition properly and prove all the disbelievers wrong. frustrating doesnt come close. i wish you well, mark.
The right side of the head pain is excruciating but I don't get a tingling wave with it; there is usually jaw pain and often neck pain however. The chest pain tends to be from the centre out across and to my right shoulder and below the right armpit. I'm glad I don't get what you experienced, I have to say. It must have been terrifying that first time when you had no idea what was happening.
Yes, I can't wait until there is a diagnostic test for Fibro. I also really hope that something will come along to at least help some of those currently labouring, unassisted largely by the NHS, with the label of ME/Chronic Fatigue Syndrome. I don't imagine the advent of a test - and let's hope it is soon! - will also herald a wave of reflection amongst those medical professionals who have been so scathing. But, hey, anything is better than nothing! All good wishes to you, too, Mark.
I am so sorry to hear this, but I do understand how you would get like this, read my reply to MrsMouse.
I wake up every morning anxious and not wanting g to deal with it all another day...but I do and I will, as I used to love life and I want it back again !! Take care you are not alone xxx
I can relate and have similar symptoms. I become hypervigilant about any new or worsening ailment. Which leads to a ''Oh no I'll never get well'' followed by ''what's wrong with me, why am I feeling like this.. Oh this is so bad.....'' A whirlpool of fear and foreboding. I get extra tense and edgy. Both anxiety and depression where I lose motivation.
I can empathise so much, the stabbing pains in my chest are causing me much panic this week - "whirlpool of fear and foreboding" so accurate a description, the more I worry, the worse the pains
Yes I find any anxiety or stress makes the pain feel much worse. When my mum died 7 years ago the grief seemed to manifest in physical pain all over my body and was really bad. I tried explaining this to a locum GP a few months ago and how at times like that I need to up my meds but he got wrong idea about how I use pain meds and I felt I was banging my head against a brick wall - he didn't get the bit about flares and how pain can become much worse
Especially at night in bed or when I wake because I am anxious about all the symptoms I might get that day...I tap my fingers or swing my legs, clench my jaw, I seem to shake internally. I don't thi k I breath properly, I seem to hold my breath, can't relax....it goes on, but its so miserable.
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