Do you personally have any of the fol... - Fibromyalgia Acti...
Do you personally have any of the following as part of Fibromyalgia in relation to Dysautonomia (Autonomic nervous system dysfunction) ?
Please select all that apply:
Restless legs, diverticulitis,
Me too.
i do as well and many stomach problems along with loads of other things
Me too and cramps and spasms
I was interested to hear you have cramps and spasms. I am going through a very bad dose of these at present. My whole body is shaking inside with spasms, and particularly my stomach is cramping, though I know I do have severe IBS, but somehow this is different. Apart from rest, and heat, I just do not know what to do. I am a firm believer in herbal medicines rather than drugs, and have coped with M.E and IBS and Fibro for years, refusing to take any strong drugs. I do find that Vogel has lots of suitable herbal preparations, some which I take.
The temperature regulation is the worst for me. Sometimes I am so inexplicably hot and people look at me like I’m crazy. Then other times I am freezing and can not get warm again. No middle ground!
I have this too, it drives me crazy, there is no letup I’m either way too hot, or freezing cold
I’m exactly the same! I was on holiday in Egypt last year, boiling hot temperature 🤒 and I’m sat shivering in a bikini top shorts and a cardigan on the beach. I was freezing 🥶😂😂
I's awful isn't it. I go around like a radiator. Hot days are awful!!
It is awful, I have a fan in my bedroom and it’s on/off around 20 times through the night 😂😂 I must change myself 3 times at least too, plus I tuck a cotton handkerchief under my chin/neck to keep it cool 😎
I am the same I thought it was the menopause but blood test said it wasn't
My doctor tried to fob me off saying that I was menopausal but I’d already gone through it 3 years previously, I haven’t had a period now for over 6 years. Plus this sweating 😅 was different to the hot 🥵 flushes I used to get when I was menopausal. It took a referral to my cardiologist to get to the bottom of my problem. Although I’ve got Fibromyalgia and had it for 4 years, I knew there was something wrong on top. I was diagnosed with postural hypotension and autonomic nervous system damage. I’m now receiving treatment in the hope my blood pressure can be raised and maintained. 🤞
It's the pits. One minute the sweat is teaming out of me and I am desperately trying to loosen or take off my clothes! I prefer to stay in because of this problem.
My hairdresser always comments that she cannot believe how hot my head is!
And in a flash I am shivering! I never know what to put on.
I hate it with a passion.
Same here
IIH Idiopathic intracranial hypertension
Extreme sensitivity to glare, light, noise or more than one person talking at a time.
Interesting as I have all this too as well as temperature control problems and insomnia.
It kind of makes me feel better that I share fibro and related symptoms with others. I'm not crazy!
You're not crazy believe me. My family think I'm nuts with extreme cold and hot. They just can't believe it😀
Oh how I can relate to that my lot think I'm mad I'm appear to oppose their body heat they're hot I'm cold and vice versa. I have to have a a divided quilt on the bed one side is 10tog as my partner is always cold, the other side is mine at 4.5 winter and summer. I don't know if any of you get the fibro fog, it's awful talk about dithery and not with it. Horrible.
Yes I have fibro fog too. You feel such a fool when someone is talking and then you try to join in and you just stare blankly into space for the life of you not knowing what the conversation is about. And also when you are about to speak and the whole conversation is absolutely lost gone out of your head. I need prompting all the time but I ca have forgotten what the bloody hell I was talking about.
So embarrassing.
Yup my psychiatrist says this is dissasosiative disorder lol
"glare, light, noise or more than one person talking at a time" also puts the dampers on a good night out. I can take about an hour of it before I want to go home to peace and quiet. Has not been good for relationships 
Yes. I feel like they're sucking the oxygen from inside my head. Then I feel lightheaded. My eyes become fixed & I've started with strange sensations in my ears.
Same
I have this. Bright lights and strong smells are the worst. Along with ibs vertigo chronic pain sleep aponea the list goes on and on. Only fellow sufferers understand.
Wow me too or more than one noise I have my phone on silent all time cos I can’t stand the noise
Sleep Apnea
Chronic IBS sensitivity to load noisy places spondylitis and more things too long to list 💐
IBS difficulty urination light sensitive
Disrupted sleep is my big problem even my pills don't cut it for me and sensitivity to brights lights and people.
I'm now have high blood Pressure medication controlled.
I’ve started having nights were I don’t sleep at all? Is that a normal symptom too. This is a relatively new thing happening to me, the insomnia I mean, not the rest of it x
Yes me too the last two it’s taken me to 5.30 in the morning to want to try and sleep feet ,legs,hands and back in pain all the time x
I can’t control my temperature at all and I can’t stand loud noises either or bright lights I never new this was a problem with fibromyalgia though x
Can’t control temperature restless legs. Difficulty walking pins and needles in my hands and legs all the time and my legs often collapse under me my balance is awful these days
I also have hashimotos thyroiditis an autoimmune condition involving the thyroid gland where eating gluten in food triggers an autoimmune response which results in my immune system attacking my thyroid gland at the same time as it's attacking the gluten in food
I have choliocystitis (gallstones) awaiting removal of my gallbladder.
I also have sleep apnoea (Where I stop breathing when im asleep)
I have restless legs and arms which strike when I'm trying to relax
I am also very sensitive to any pressure on my arms and legs,
my feet feel like I'm walking on red hot coals all the time but my feet feel cold to the touch, I wear open sandals all year round.
I joke with my family that my thermostat is broken as I sit and shiver under a big warm blanket tucked under my chin every evening while they are in t shirts
The sensitivity to any pressure on your arms and legs is known as ALLODYNIA 
Oh thanks for naming it for me, it's funny I feel every tiny wrinkle and bump touching my arms legs and back but having a heavy warm blanket over me brings a slight relief to the constant fibro pain.
Yes, it seems like a contradiction, doesn’t it?
But, interestingly, heavy blankets (or weighted blankets) are often used for sensory processing difficulties because the Deep Touch Pressure (DTP) aspect of it has been shown to have a calming, organizing effect on one’s nervous system.
I get allodynia pain from clothing, glasses, hats etc...but being wrapped up in a blanket, as you say, is bliss
Feels like no one cares Doctor more or less does nothing x
I know what you mean but I'm sure they do care, they probably just don't get itx
Yes, I think many do care. Whether individuals do or don’t, medicine just doesn’t have answers for fibromyalgia and our related neurological malfunctioning. They are stumped.
Ibs, migraine, ic, sensitivity to noise, light and smells
Other - restless legs syndrome
IBS, restless legs, breathlessness, flu like symptoms, extreme chronic fatigue (feels like I also have ME/CFS), bloating, frequent urination with excessive thirst, frequent chronic migraines, light sensitivity, noise sensitivity, low blood pressure, non diabetic hypoglycaemia. The list goes on...
Restless legs and the same feeling as that in my private parts 😭 it's really annoying. Chronic fatigue, some days I can't get enough sleep. Even if I sleep more than usual I still feel exhausted, shaky and weak on days like that. It's usually accompanied by profuse sweating and it usually comes on as soon as I get out of the shower so I try to shower straight before bed. It seems to happen more when the weather is about to change, especially when it's windy, even if I don't go outside.
Postural hypotension.Extreme sensitivities to noise(especially higher pitches),temperatures (hot and cold),bright lights.Sudden onset abdominal pain and diarrhoea despite having a gluten free diet as am coeliac.Unexplained skin rashes despite using hypoallergenic products.I’ll probably remember more once I’ve posted.
Hi everyone I've just put two posts on more than I. Have ever done in one go but I can really relate to all of you I now cannot wear different fabrics as they make me itch I'm only ok with some cottons, I don't/didn't know whether it's because the manufactures mix so much other stuff into fabrics now a days but reading this I'm thinking more and more that many symptoms that I thought were something else wrong with me is lie fibro taking more of a hold on me. Doctors are never sympathetic as they don't know what fibre really is even the hospitals are not really sure.🤔
Severe neuropathy pain all over with constant chronic fatigue.
parasthesia of limbs and face, tinnitus extreme persistent vertigo.migraine with aura,RLS
I have:- Hypertension, Hypothyroidism, Diverticulitis, multi skeletal issues, Bursitis alongside fibromyalgia
I get frequent urination. Disturbed sleep. Tingling in legs. Aching muscles. Swollen glands.
Swollen legs and ankles. Tinnitus. Blurred vision. Fatigue.
In fact, never feel well.
Problems with swallowing/choking on food. Sensitivity to light sound smells, recently had very strange reaction to flickering light in a shop.
I too am struggling with swallowing food. Even my own saliva sometimes. Also, falling over myself, sounds silly but legs just wouldn't work when standing, one crossed the other. Couldn't undo it. At least I was at home
Dizziness, fatigue, headaches, blood rush to the head and ears while sitting...
Sensitivity to light and noise, restless legs, fatigue and exercise intolerance, problems with gastrointestinal system, anxiety, tremors, weakness, concentration and memory problems.
Hi, I have many symptoms, including sensitivities to foods, light, noise, hot sun on my skin, and odours and perfumes of various kinds, especially mould and mildew, several types of foods and drinks, etc I am extremely sensitive to. Skin problems with contact to synthetic fibres, many products, etc. in addition to several things on the survey. Also have peripheral neuropathy. Skin and muscle burning at times, tingling and numbness, pressure pain, etc. Diagnosis of POTS and HEDS, IBS.
Other is a huge sense of disconnection - mentally and emotional; almost like being split in two - so that I can see I am not going to make a response but can’t do anything about it even when I am willing my body to respond or, the complete opposite, where I cannot see something coming ... Really distressing ...
Also, noise sensitivity, conversational exhaustion, scalp sensitivity (even hair style pain), walking any length of time brings on weak watery feeling in pelvis & upper legs
I have restless legs and stomach issues
Not being able to hear properly and filtering out noises...like the back ground noises at time
Poor appetite, restless legs, diverticulitis and costipation
Migraine, nausea, limb pain.
My arms and legs become highly sensitive to touch; pins and needles all over.
I have diverticular disease, left ventricular heart failure, sleep aponea, chronic kidney disease, multiple oesteo arthritis site e.g. knees, neck, back, hips as well as fibromyalgia, and fibro fog with memory loss. Happy days eh.
No, none of these whatsoever.
Also - Brain fog and speech impairment when I’ve done too much physical activity. Ie not paced myself. RSL.
I have had speech loss, i.e. no voice, as muscles are too weak to operate my vocal chords, except get a little return with lots of rest, but with deafness and tinnitus too, makes life very difficult to converse with my poor husband/carer. So live virtually in my bedroom alone.
Noise & light sensitivities.
Yes that and many other things
I feel like over the last three and half years, more and more conditions are being added to my collection. I started with Hemiplegic Migraines, then went to Claudication! Closely followed by blockage of my iliac artery which resulted in me having Angioplasty at age 48. They used a plug which crushed my arteries including the main man Femoral, so had to have major surgery with an artery from my lower leg grafted, although never used because it was useless 😮 5 hours later back from surgery. On the ward Femoral Artery bursts and I’m floating in my life’s blood, with a nurse on top of me and her hands pressed in places a lady has never been before 😉🤭 Back to surgery for another 6 hours, apart from developing Sepsis, Bladder infection in hospital I was hunky dory.
I’ve gone from working over 50 hours a week, as a full time housekeeper to a then prestigious premier footballer and his family, to barely even getting my head off the pillow. Frequently I want to die, I grieve the life I had, the life where I was up at 6am and never sat down until 9pm. I used to holiday 2-3 times a year, I loved the beach, and walking around our new surroundings, but now I have to tackle the nightmare of a new mattress!, Jesus, the agony, then the weather change, and for some reason my eyelids swell when I get in the heat now. I can’t go in the sun without factors 50 and above as my skin goes a purple bruised colour and swells, and due to a damaged autonomic nervous system, I can’t control my own body temperature either so hot or cold means nothing to me! Fibromyalgia is another problem i suffer with, so sitting cramped on a plane for 5 hours kills me, my pain is mostly left sided so if I can’t stretch out my leg. After my surgery I thought great clean arteries, but no! Still have Peripheral arterial disease. My right eyelid drooped over my eye, they discovered I had Horners syndrome and also suspected I’d suffered a small stroke because of the blood loss.My voice croaks like I smoke 60 cigarettes a day, and sometimes I can’t swallow or it goes the wrong way! Frequently I have diarrhoea for no reason whatsoever! The list is bloody endless. If I was dog I’d have been put to sleep by now.
I’m also under the cardiologist now as been diagnosed with postural hypotension, being treated with steroids and another medication which is helping slightly despite the fact I’m on the full dose.
I’m having the 24 hour monitor fitted again tomorrow, hope it’s good news, I never get good news😂😂
I am so, so sorry for your unrelenting pain and uncounted symptoms. Keep sharing. It helps a little when others can relate somewhat. I pray for moments when you know peace.
Sending compassion,
Harmony2
I have a condition called ETHROMYALGIA , apparently rare !
( burning palms ....& soles of feet ! ). Anyone out there with this same ?condition ?......Legs feel like LEAD ...& the nerves tingle inside when sitting
Muscles around shoulders ...and arms when trying to lift ......SO PAINFUL !
Feeling really rough at the moment !
Just SO PAINFUL to move !
Have had this on & off now for several years !
Pain in legs
aches in the common places, ankles, lower and upper legs, hips, knees, neck, shoulders and lower back which feels as though ive run a marathon, causing me to walk as my kids put it, as if ive pooed myself... also eye pain as though someones pushing the eyeball in..headaches, foggy brain, ibs bloated stomach, restless legs, formication in the same places all the time, temperature regulation, sleep apnoea, photophobic.... i think thats it....
My heart rate thumps and is fast. The Rheumy I saw said itwas obviously down to the ANS stimulation and I take propanolol to help. Theres nothing worse than trying to sleep at night with a samba drum group bouncing in your chest!!
I have some of these conditions, but some of them (high blood pressure) were evident before Fibro. The most striking change has been my inability to withstand hot weather...I used to be a sun worshipper but can't bear it now, as last year's hot summer showed me. But after watching BBC Breakfast's reports into the menopause, I'm not sure whether that is the cause or Fibro.
restless legs syndrome, IBS, lactose and gluten intolerances, chronic fatigue
Skin problems.
Me too - terrible stomach problems and restless legs
Also, joint pain, tingling in arms and legs, chronic fatigue and appalling brain fog and memory problems.
Restless leg ,IBS, Costochondritis, migraine
I pretty much always feel cold, unless it's really hot and then I feel great. Trouble going to sleep, staying asleep, and going back to sleep. Tingling and numbness in feet and lower legs. Can't tolerate pressure (e.g. blankets, other leg) on my lower legs or feet, esp when in bed at nights.
I have numbness in hands feet head and left side of face and blurred vision in left eye tinnitus and all my bones crack when they move xxxx
Does anyone else have weird sensations in there head numbness and the feeling it’s swelling also get like a spring pinging in there followed by body jerks only really happens when laid down also get lymph nodes constantly swelling behind ears and vertigo plus just about every symptom that’s mentioned on this post so weird so many of us have same symptoms that I didn’t think could be fibro mmmmn really strange
Does anyone else feel overwhelmed when walking in the supermarket?
I feel like I am suffering with visual graffiti. Too much input and it makes me feel giddy I wouldn’t mind if I was moving quickly - (no chance lol) !
The myoclonus, (involuntary movements), is particularly bad first thing in the morning.
Any sudden sounds, even someone just putting on a light switch, makes me jump as if in terror. I can’t stand fans or the sound of water running through pipes.
I love that first cup of tea but hate the sound of the kettle heating the water and the stupid beep when it’s reached boiling point.
Ditto for any loud noise, more than one person talking at me and bright or flashing lights. 🥶
The neurologist calls it over sensitivity of the brain: I call it torture at times !!!
Jan xx
Yes. Visual, lighting, odour, noise, touch sensitivities and also being jostled or just extra draining in an environment that is very busy/lots of activity. Search “sensory processing disorder” or “hypersensitive to sensory input”.
Makes outings so draining to already tired people!
Some deep pressure in joints helps—Search proprioceptive sensory input
Hope that helps a little...
Harmony2
Thanks Harmony, I’ll do some homework xx
Costocondritis, Oesophageal Reflux, Compromised circulation, Smell hypersensitivity, Burning feet, whilst feet actually cold. Food sensitivities. Cramps in hands and feet.
Extreme sensitivity to light, hate bright lights as it hurts my eyes.
Don’t sleep well at all, can’t remember when I have had a full nights sleep.
Memory is totally bad. I would be talking to someone and mid sentence I’ll forget what I was talking about. Do not remember names anymore it’s really embarrassing, awefull when you are in front of someone you’ve known all your life but just can’t remember what they are called!!! 🙈
My life is very small with fibromyalgia. I used to be up at 6am, at work by 8, holding down a very responsible job. I started falling asleep at my desk, tripping over my feet, dropping things, being unable to remember things, dragging myself up the stairs. Whereas before I had run around all day, I literally never stopped. I had to remember formuli and recipes for diluting conc. chemicals and making up stock chemicals from powders or crystals. These days most of the time my mind is pretty much a blank. I can’t think straight, can’t remember things just moments after being told them. When I speak I stutter over words, get them mixed up or lose what I was saying mid sentence. I also am either boiling hot with sweat dripping off me or freezing cold, unable to get warm. Smells make me feel nauseous, and light and noise is hell. When my husband suddenly appears I nearly jump out of my skin. I am so tired I can barely get out of bed, and I have absolutely no interest in getting in the shower, whereas I used to shower and wash my hair every day, I have totally lost interest in what I look like. My walking is pathetic, I fall over or lose my balance a lot. I have appalling Incontinence and terrible attacks of IBS. I can’t go out anywhere without knowing where the toilets are, but still have to wear protection. Where does this life destroying condition come from, what on earth causes it? Is it because mainly women suffer from it that no research is done. I would gladly be a guinea pig. A lot of the time I think that life would be better if I wasn’t around.
It feels so true some days. Can you share with a friend over the telephone or with your husband?
Or post here separately vs in this very long thread. It’s a supportive group when people see your comments.
Thank you for sharing this honest description. As I read this I’m reminded anew not to carry the discouragement by myself — it’s too heavy to bear alone. Thank you.
Harmony2
Allodynia
I also have restless legs ,neck pain,stomach problems,anxiety issuesand brain fog.
I also have: Restless legs, cramps and spasms in legs, feet and toes, involuntry jurks when lying down mostly in legs but can be whole body, IBS (both bladder and bowel), difficuly with eyesight when I get up (can last a couple of hours on a bad day) to name a few. Fibro - the gift that keeps on giving. I also have CFS and OA. Love and gentle hugs to all xx
I also have restless leg syndrome, gastric problems starting with irritable bowel syndrome and much more. I had a bad episode or What was unusual Fibro flare that left me with Tremors. I get central nervous system feeling in my spine like bugs crawling sometimes and like rls can’t sit still. Pain in feet and hands with stiff joints and bursitis in the hips? Now being checked for bulging and herniated discs in neck and lower back! Hope this help the study? Gentle oooo
Yep, many many others! Including tremors, no tolerance for heat or very cold temps. Restless leg syndrome and central nervous system crawling feeling at bedtime can’t sit still. Too much to mention! Migraines too!
As soon as my eyes flicker open in the morning I get this horrible feeling like walking off the end of a cliff then I get the sweats. Horrible! It can happen through the day but is worse on waking. Other times my feet & hands feel like ice! I also have slight swallowing difficulties with meat / bread etc and bowel cramps
There are more symptoms of fybromyalgia than just pain!
I have tinnetus, hot & cold feelings, fibro fog, I don't know if ulcers in your mouth have anything to do with Fibro, I have at least 4 a week & they are so painfull.
I have severe pain, have tried opioids but they don't work. No painkiller works. I take duloxetine , nortriptyline , tizanidine but I can't find relief. My pain is so bad I can't breathe. So depressed I keep thinking about killing myself.
Hello Entela15,
Thanks for sharing your experience. You shouldn't go though these feelings and thoughts alone, so please check your email to see other options of support. Take care
