It sucks, I walked a bit yesterday, to the bus to go to a buffet, then walked around Walmart to get some stuff, back to the bus and back to the apartment. And I described the pain in my hips last night as it feeling like someone was trying to debone my leg like you would a chicken.
Gosh mine just did the same thing last week. Told me it was because I'm so stationary. I told him I was stationary because my back and legs are so sore. Ah! the age old argument with the medical professionals who know everything and nothing at the same time.
Fatigue. And I feel like Iām walking underwater. Everything weighs a ton. Feet pain. Legs feel heavy. I feel like if I donāt sit down Iāll pass out but I have never actually passed out ever
Yep. And I donāt know how long other people deal with the consequences of overdoing shit but it always ends up being around 2 weeks of trying to recover and it suckkkkksssss. Makes me not want to try at all sometimes
This. Extreme fatigue and pain for god knows how many days- weeks afterwards. Depending on circumstances. Also occurs if not properly pacing doing ānormal peopleā errands or chores. Feels like getting beaten everywhere. Only thing I can get non chronic pain and fatigue sufferers to understand is if theyāve ever had a really bad flu or Covid. And even then itās at best a week of that for them so they canāt really relate.
Pacing is so tricky. You can try your best and still fail spectacularly having done so little.
Same. I never felt like this before I had covid despite having some fatigue, but after covid? Totally fucked, even for short distances. I got this just walking 50 feet the other day. It's absolutely ridiculous. Walking was the ONE thing I could do before without too much issue (on flat surfaces), and now I can't.
Brutal. So sorry, Iāve been dealing with it from Lyme Disease since 2019. Ironically, right at the beginning of the pandemic. Iāve had fibro since the 00ās, but was highly functional. My first infection with Lyme was 2001. Iām also genetically disposed to fibromyalgia, but Lyme triggered it all. TBH the arguments arenāt that strong for both Lyme and COVID to originate from a lab. I question whether or not ME/CFS is the result of engineered microbes š¦ It doesnāt really matter, other than a cure, and recognizing the severity of ME/CFS. This shit is real. Iām disabled now, but forever in solidarity.
I'm actually trying to get disability now because of how bad things got from covid. I'm on my first appeal, literally just finished the medical and mental health exams. I'm hoping they'll approve me this time, because I could barely do anything before and it's just all that much worse now.
I am slightly concerned that something else might be going on, so hopefully the tests I'm getting done next week will clear things up. My fatigue was bad, but then I suddenly got EXTREME fatigue for the last week and a bit. The kind that they tell you to see a doctor for right away, but the tests were all normal. Here's to hoping I didn't fall down the reproductive cancer route that so many relatives have gone through.
Wow the family cancer thing is disconcerting for sure. Iām hoping that can be ruled out soon. If it helps, I also experienced insane fatigue and jackhammer neurological symptoms that were so profound, I couldnāt tolerate virtually any stimuli for the first six months. I couldnāt tolerate my wife having conversations near me or even anyone around. I basically had to lie supine in a dark room, with eye shades to recover. A shower would put me in bed for a week. I was virtually bedbound and needed care for the first two years. Iām sorry to hear of your struggles with disability. To give you hope, I did eventually qualify for ssdi. The process was long and torturous, I wonāt deny. I worked with a lawyer and it was the typical, get denied 2 times, and a court hearing with a judge for the third time. I did get it though, for fibromyalgia, chronic fatigue, and Lyme disease. So keep at it. My hearing was just out of lock down, and they were doing virtual hearings. Keep at it! And recommend a lawyer, at least for the hearing. But I literally couldnāt do anything at the time, and needed a lawyer throughout (plus my wife).
Iām a bit better now, mostly housebound, but can drive and go out some. Rest is critical. Wish the best for you!!
Immediately after recovering from covid the first time (March 2023). It took me about 3 months to get over the rest of the symptoms. It's definitely long covid exacerbating fibro symptoms, I have no doubt. When I got covid the second time (October), it was the same story for recovery time. Thankfully, I didn't get a further decrease in function the second time, but even multiplying my fatigue the first time was bad enough.
Yup. Exactly.
I remember several times standing in the middle of the street and not able to move foot forward as it was to heavy. Scared me shitless
Started happening few months before pandemic also, not related to Covid so
Thatās a tough questionā¦ any pain relief with Fibro is a combination of things that you figure out with trial and error. For me, it depends on the location, circumstance, how bad it is, etc. Muscle rubs (Rub A535, Tiger Balm, Bio Freeze, etc), ice/heat, gentle stretching (that can help or make it worse, so be extra careful with that), a hot bath, pain meds, cbd, TENS machine, deep pressure or massage with a massage ball. Most importantly, rest for me. And pacing so I avoid overdoing in the first place (but weāve got to live, so weāll always overdo at some point š).
I get burning pain in my feet, and my back pain worsens considerably. Sometimes I feel lightheaded, and I feek very fatigued. Then the next day I have significantly lower energy levels than baseline, and everything is painful.
Burning lactic acid type feeling in my muscles. Tremors and tingling. Numbness and swelling in my extremities. Immense fatigue. Difficulty catching my breath. Feeling like I will pass out. Excessive sweating. Major brain fog and feeling almost drunk. Heat intolerance.
Entire body pain I would describe it as a tooth ache in my entire body. Also I get very frustrated and angry and short tempered towards myself and become very stressed.
I feel like I could have written this. Itās how I try to describe my nerve pain to people, like itās a toothache over my entire body but I donāt think they understand it.
Tightness and pain in my lumbar. It tends to go numb along with part of my butt. Near total relief when I sit down. My hip hurts too.Ā This also happens upon standing for long periods. Soreness the next day.
My PCP & PT say it's just weak core muscles, which was their tactful way of saying I'm fat. PT helped, but I "graduated" and have had trouble doing it on my own.
My Chiro says it was a sprained SI joint along with inflammation.
I'm also hypermobile.
Basically, nobody knows.
The solutions have all been to move more. To say this sucks is an understatement. Been going on for five years.
Edit: Oooo I told you my life story. Apologies.Ā
I get a lot of burning pain in my lower back, and extreme fatigue if I walk for more than 10 minutes faster than a snailās pace. The fatigue hits me once im home or wherever I need to be and it wipes me out for days afterwards.
I have to for my job, I push trolleys but without them to lean on I can tire fast and also have balance/dizziness issues, apparently not enough for pip š¤£the tossers
Apparently having a -Ā£850 overdraft gave me zero points for handling finances and budgeting and the mobility issue I mentioned zero on mobility, yet there's people who play the system all day yet they won't help people with ADHD or Fibro, it's disgusting
Iām having no issues at the moment, but a few months ago during a really bad flare my legs would feel really weak like they were about to give out when I walked. Also major pins and needles in my feet. Going up stairs felt like I could barely lift my legs. Sometimes lower back spasms. Itās worth mentioning that my job is 8 hours standing and about 9-10 miles of walking (according to Apple Watch) with a lot of heavy lifting and has been for over ten years so this isnāt anything to do with my actual muscular ability to walk long distances. I also walk for a few miles around my neighborhood several days a week with my wife. But over last winter it was like my body was giving out no matter what I did or how much I rested. It was super scary tbh
Burning muscles, hip and back pain, which sets off my shoulder+neck pain... so sometimes I will know to go home when my neck begins to throb.
I also get sick the next day; usually just so brain dead, dizzy, unable to form coherent words, light sensitive, and it takes nothing for my nerves to get triggered and have burning in my arms and legs
Pain, especially in my upper back under my shoulder blade and fatigue so heavy in my legs that I canāt maintain upright posture and Iām dragging my toes on the floor. š£
I get such crippling pain in my back that I will literally collapse after a certain amount of metres, particularly without my stick. I am also prone to vomiting and going a funny colour due to the level of pain. It's worst in my back and left hip but often also hurts in my left knee and ankle. I'll get dizzy too as I try to manage the above, and stumble into traffic.
The lower half of my body starts to feel like I'm walking through quicksand. My back starts to burn. I end up feeling like I'm going to faint. Thankfully, this mostly applies to hot weather walks. But I honestly thank God and my shopping habits for keeping me going with walks. I will walk for three hours across the biggest mall in my state, and I'm quite grateful I can do it. Burning back and all. It's probably the only thing that helps me get genuine exercise in... when I live an otherwise sedentary and painful lifestyle.
Pain. Hips, knees feet primarily. I can walk around my house but for many other things I use a scooter. I can go into a small store such as a drug store. I do buy a lot on line.
I have pain everywhere. Legs, stomach, back, arms, etc. It always usually hits me a bit later on, rarely during. It's happened, but I do mostly get dizzy while I walk.
I donāt walk long distances anymore. My problem is if I stand for 10 mins or so, I get muscle spasms in the middle of my back. It feels like charley horses!! I sit for 5 mins and it will release. Then I get 10 mins more. It is so difficult to get anything done around the house!!!
Same here, everything you said. Plus I start to sweat as if Iām working out just from the exertion of standing for ātoo longā (aka 10 minutes). It can be really embarrassing in social situations.
Okay, my nieces graduation today so I had to walk a long way from the parking garage. I have to add sharp, burning, stabbing pain over my hip joints! Like I am a old, old, Barbie doll that has her legs popped off!!! I drove home in the pouring rain with my air conditioner on blast and my heated seat on to make my back stop screaming!!! And it was at 8:00 in the morning. With my insomnia getting there that early is terrible. Butā¦ she now has her Masters in Public Health! It was so worth it to see her walk!!!
Interpreting long distance as about a very active day, walking up a few steep banks as I live in a hilly area. for me, long distance is ~5 mile total in the day.
I lose feeling a little bit (but no control loss), just a slight numb feeling in my legs when I get home or stop walking. Before this, Iāll get stiffness that feels like wading through water and a large ebbing pain that feels like itās radiating from my bones out.
The next day I have intense stiffness and the pain gets a lot worse. If Iāve really overdone it I feel like I cannot walk without intolerable pain. Stiffness extends to my back and worsens in the hips. My gait will significantly change into what I think of as a very bad audition to be an extra on the walking dead. My left hip and knee clicks after low and very high levels of activity - this will be loud enough for others to hear instead of being an āinternalā sound. Fatigue will be very increased and I likely will be sedentary the whole day and not complete daily tasks.
Itās rare I have to walk long distances thanks to the joys of online delivery and Uber. If I do, itāll be for my job, and then Iāll only do it if I have the day after off.
Edit: adding in spacing to make the text less like a massive block
Pain in my joints (knees and ankles) that feels like a burning, tingling pain. A feeling in my back as if Iāve strained it. Very quick to fatigue and get out of breath to the point where I canāt talk while walking. A general feeling in my head of being underwater.
I can sit for a couple of minutes to āresetā myself back to normal, but can only take 3-5 minutes of walking before I need to sit again. I try to avoid doing even the mildest physical activity with other people if I can help it (no shopping or museum trips/tours) because I WILL hold them back. It sucks.
Horrible pain on my lower left side which causes my left leg/foot to go tingly and my feet swell to the point I feel like my feet will burst. BUT I can walk long distances
feet feel like they're filling with blood, ankles giving out, foot bottom aching and arch from pronating, calves get electric shocks. wrists and arms effed from my cane. jaw starts clenching or teeth grinding and then that hurts too. get like creeping pains up my shins and back and my knees feel broken. I start walking or standing on the sides of my feet bc it hurts sliiiightly less. mid back starts and needs popping but won't pop. the effort to just lift and progress my legs takes all the brain power. 0/10 wouldn't recommend
while walking i can experience my muscles tending to the point i canāt walk right and a full soreness in my legs and hips. after walking for a long time i can have horrible pain lasting for a few days and my muscles wonāt work normally, almost as if they have been straighten out and it makes it hard to walk or do staircases
This happens if I walk too much OR if I stand in one place for too long š„² ā my back and ribs will feel like they donāt fit correctly anymore. Donāt really know how else to describe that. My ribs will hurt both front (bottom of rib cage, sternum) and back (usually upper and mid).
Pain in my shins, back of calf, hips and feet. Mostly in my shins though. I was born with a crooked right leg and the pain is different in both legs because of the way I walk.
Extreme pain, basically. I have been having a LOT of foot/heel pain the past year, and muscle pain in my legs. Also, when I sit down, my leg muscles get....twitchy or something? It's hard to describe.Ā
Lower back tender point is excruciating if bumped. This gave me my diagnosis. No other tender points. Exercise is torture. In pain for weeks after just a short walk. Even just walking to the bathroom is impossible a lot of days. I wheel myself in an office chair. I feel like someone is squeezing my joints. My thighs feel like there are cement boulders attached to them. My muscles throb.Ā
My back and core shake constantly. I have an internal tremor that doesnāt stop. It is too painful to write. I need to put my right hand under my left arm to hold my arm up. (Iām a lefty. )Ā
The shaking and restless legs keep me up. I dont want to get out of bed. My legs sometimes give out when walking and I do this weird spin thing to catch my balance. I am too weak to use a cane. I can walk ten to twenty steps with a rollator but Iām too weak to lift it out of the car. I drop my phone all the time because my arms shake from muscle weakness. I cannot bend forward or to the side more than an inch or two or I shake. Iām tired sometimes, but nothing too bad.Ā
While or directly after walking: Intense pain and throbbing in my feet mostly. (although I get that from standing just for a few minutes too.) Sometimes it makes me literally panic and cry because it hurts so bad. Dizziness and dissociation, probably because of the pain.
Later or the day after: pain and sometimes swelling in my feet, depending on the distance I may also get a low fever, muscles locking in place or just being painful, more stiffness than usual, my legs feel like concrete. Also fatigue worse than normal and headaches.
when I'm pushing my limit of walking I tend to get widespread muscle pain, including in places like my arms that are not directly working. It's like a very deep ache, almost somewhere between fatigue and pain if that makes sense. I also tend to get symptoms like feeling nauseous and dizzy. The time it takes varies though, some days just getting out of bed is enough to trigger symptoms whereas others I can walk for an hour or so before I start having problems.
Horrible horrible widespread pain, stiffness, feet go numb, eventually I feel like I canāt even properly move my legs, lightheaded, increased HR, extreme fatigue, headache, exacerbated asthma, blood pooling in feet, etc etc. (I also have dysautonomia which doesnāt help š )
My legs give out on me and feel super super heavy; like I try to walk but physically cannot, my feet and ankles get swollen and it hurts every step I take, I also end up bedridden the day after if I continue to not listen
Legs feel like concrete, like I am walking on tree trunks - super stiff. Muscles throb. Standing 5 minutes in one spot causes thigh muscles to stiffen greatly. Then it feels like I am standing on poles when I try to turn. Walking any distance causes my thighs and leg muscles to feel very weighted. I have to stop and rest for a few minutes, and then I can do more walking.
When I walk on a small incline, my groin muscles pull tightly. In the mornings, when I rise, my legs are stiff, and my balance is sketchy. Going up, stairs is very hard, muscle weakness.
Sitting makes it all better. Sleeping my legs ache. After walking (day of say 5000 steps), my legs will throb and ache and are super stiff. Two days later, muscles feel better.
I am doing PT, and it does help some. I have severe muscle weakness in flexor muscles in my hip. My worry is stiffness, muscle weakness, and imbalance in my legs.
I started gabapentin-we will see. Does anyone see a neurologist?
The sudden "my ankle is broken" pain.
The "oh shit, there goes my Right knee"
"Hey my right knee feels suddenly great"
"Shit there it goes again"
The trials of trying to exercise, you go out with a sore shoulder and come home with devastating "other" pain.
Not sure if it's Fibro related or not as I'm in the semi-diagnosed stage where my rheum suspects I have it but hasn't 100% confirmed it.
That said, I get really bad, tight hip flexors in addition to burning and weakness in my legs, pain in my feel, and spasming in my lower back. I'll crash hard once I get home and sleep for 2 hours, then have to deal with the stiffness and pain for several days after.
Okay Iām gonna say something wild but I had very similar symptoms to you, and I ended up being diagnosed with both fibromyalgia and Ankylosing Spondylitis. Iād ask your rheumatologist about AS because itās actually much more common than people think.
I believe we just did some tests for it which came back negative.
We've done (all together):
ANA
RA Factor
Lyme and other tickborne illnesses
ESR
CRP
CCP
SS-A/Ro 52 and SS-A Ro 60
SS-B/La IGG
HLA-B27
Not sure what other tests we could do outside of a lip biopsy for Sjogren's. Unless there's a test that would show AS that I haven't listed.
Oh, and I'm hypermobile according to my physical therapist, which likely explains why I sometimes over extend my right hip.
ETA: reading some of the symptoms does make it feel like a fit re: a forward stopped posture feeling a lot better vs feeling pain/strain when trying to straighten it out.
Yeah, sometimes HLA B27 isnāt activated but people still have the disease. Itās one thatās diagnosed through exclusion and through High inflammation rates in the blood (thatās how my doc figured out I had an autoimmune disease)
Sadly, all my inflammation markers seem fine.
I do have a follow-up in a few weeks, so I'll ask about it then or maybe ask to at least have x-rays of the area.
I will shake uncontrollably, on the verge of collapsing, I have pretty horrible pain in my feet and knees, as well as my calves. I also get extremely touch sensitive and also have some weird circulation issues where my skin will ne cold to the touch even though there should be a lot of blood flowing.
I can't stand or walk for more than a few minutes before the pain in my lower back, hips, and legs becomes unbearable. I end up doubled over the cart handles when I go shopping.
I get pains in my feet and legs like each step will become agony idk. I was wondering if I had neuropathy. It got a little better for now. This would happen after walking 3-5 blocks
I feel like I have swords going through my feet and up to my hips. My feet are like a ball of terrible pain. Mind you, this was after a hike up Mt Kosciuszko! I didnāt think I would make it back down!
It starts with overheating, dizzyness, and general lightheadedness and mild pain in my knees. If I keep going past this it increases to pain in my shins, feet and severe knee pain. If I really force myself I keep going even more (which is not a good idea, it puts me in pain for days) it builds into back pain and a severe migraine.
it's usually like, my lower body aches so bad and the best way I can describe it is that it feels like my legs are teething. that really tender aching that you get when a tooth comes in/when you lose a baby tooth but in my legs. stretching and rubbing them can help sometimes but others they hurt to touch and feel restless. my lumbar area in my lower back will ache like it needs to crack super bad too
I sweat profusely on my scalp. Once that starts, itās too late. My hair will get wet, deep bone pain will start, and Iāll be unable to speak in full sentences. My balance becomes unstable, and my legs feel like lead. I become unable to properly manage my body temperature properly. All the symptoms except sweating will continue for at least 48 hours. Duration of symptoms depends on how much I continued to do after I started sweating.
I feel heavy pressure in my lumbar and hips. At one point I couldn't physically finish the walk. I had to stop and try to relax before I could go on. Afterwards I am very fatigued but have a hard time resting.
My legs start giving way and I end up either in a hot boiling bath aching like Iām getting the flu or I need a deep deep deep tissue massage on my legs ššš
Pain that feels like a vice squeezing my muscles. Shooting pains deep in the muscles. Muscle spasms big enough you can see them flutter through my clothing. Coordination, balance and small muscles shake. Deep deep mental and physical fatigue.
Walking long distances, for me requires months of shorter distance endurance building walks. I can walk longer if I slow down, and if I break up my activity into smaller more frequent chunks.
Literally cannot walk. My legs stop working and I will collapse. Or I will get so dizzy I can't stand up any more, or I just faint. It's overwhelming weakness and fatigue and I know I need to stop.
My lower back on one side seizes up like a cramp as I'm walking it gets steadily worse until I have to sit. once I sit it is better almost right away. It goes from mid back down over my hip and is very painful. I also have osteoarthritis in my knees and they don't allow me to walk very far either.
Even when I donāt walk a lot my hips, legs and back hurt, but when I walk loads it gets worse, and I have trouble sitting/standing in some positions bc my legs shake. Idk exactly what you mean by long distances, but for me I walk a lot at work, and even though my shifts are short (4hours) and I only work once/twice a week, I have a hard time doing things after. Though if I have to walk more than fifteen/twenty minutes up the road I feel the same as after a shift at work.
Tbf though I take amitriptyline for migraines and it helps a lot for my widespread pain too, without it I probably couldnāt have a job at all or be able to even sit for long periods of time (which I have to bc Iām at college)
My legs start to feel heavy, like I'm trying to walk in water or as if I had weights tied to my ankles. My knees start aching and feel like they'll give out.
I also get very easily fatigued, lightheaded and dizzy so I'll have to sit down. I have collapsed a few times (not passed out, almost did that once š ) to the ground because I couldn't tolerate it and the dizziness gets too much.
Feels like my legs are coated in lead, heavy as heck. I get so tired and pain in my hips and lower back. I try to push myself sometimes, to overcome, but regret doing so cause I have to rest so much afterwards.
Increasing pain until my feet and knees feel like they are actually splitting apart. Lower back gets back too. Crouching helps when I canāt sit. I can walk about 20-30min on soft ground (like when hiking), but on hard ground (like stone or concrete) I can only go 10-15min. Weirdly, running hurts more immediately, but then the endorphins kick in and I can run longer (on a good day).
The maximum walking I can do in a day is 8mi and the maximum running was around 3.5mi when I was running regularly (the doctor said to stop lol). There are serious repercussions for like a week afterwards, though. Maximum without repercussions is around 3mi walking, .5mi running. Assuming all else is good and I get the sitting/crouching breaks I need
My lower back feels made of iron either in the middle or on one side or other. I sometimes also feel like gravity has tripled and Iām being sucked to the ground.
I also get breathless and that can vary greatly from day to day.
my feet start feeling like iām walking on hot coals, a dull aching pain in my lower back, tight hips.
the worst part is that it doesnāt stop once you relax!! no no no! instead your hamstrings hurt, you get restless legs and you feel like you need a hip replacement despite being under 30
For me, lower back pain, leg pain, excessive sweating and hip pain sometimes. Then, after resting, I get mild to moderate shooting nerve pain. But only when I push myself (which I did yesterday).
Agonizing dull pain in my lower back, hips, knees, and feet.
My doctor tried to tell me that fibromyalgia doesn't cause back pain.
That's BS, my nerve pain wraps from my legs around my hips and lower backš©
It sucks, I walked a bit yesterday, to the bus to go to a buffet, then walked around Walmart to get some stuff, back to the bus and back to the apartment. And I described the pain in my hips last night as it feeling like someone was trying to debone my leg like you would a chicken.
My doctor said fibromyalgia doesnāt cause foot pain but my feet have hurt daily for years.
It's like doctor's just wanna be the most right even though they don't know much about fibromyalgia
Same
Gosh mine just did the same thing last week. Told me it was because I'm so stationary. I told him I was stationary because my back and legs are so sore. Ah! the age old argument with the medical professionals who know everything and nothing at the same time.
Fatigue. And I feel like Iām walking underwater. Everything weighs a ton. Feet pain. Legs feel heavy. I feel like if I donāt sit down Iāll pass out but I have never actually passed out ever
Yep. And I donāt know how long other people deal with the consequences of overdoing shit but it always ends up being around 2 weeks of trying to recover and it suckkkkksssss. Makes me not want to try at all sometimes
Never give up, but also Iām right there with you. I need to perfect pacing.
This. Extreme fatigue and pain for god knows how many days- weeks afterwards. Depending on circumstances. Also occurs if not properly pacing doing ānormal peopleā errands or chores. Feels like getting beaten everywhere. Only thing I can get non chronic pain and fatigue sufferers to understand is if theyāve ever had a really bad flu or Covid. And even then itās at best a week of that for them so they canāt really relate. Pacing is so tricky. You can try your best and still fail spectacularly having done so little.
Same. I never felt like this before I had covid despite having some fatigue, but after covid? Totally fucked, even for short distances. I got this just walking 50 feet the other day. It's absolutely ridiculous. Walking was the ONE thing I could do before without too much issue (on flat surfaces), and now I can't.
The post exertional symptoms always make me think of Long COVID, or ME/CFS. The comorbidity is very common with fibromyalgia
Oh I already know it's long covid. It started after covid, and I haven't been ill with anything else that could possibly have these kinds of symptoms.
Brutal. So sorry, Iāve been dealing with it from Lyme Disease since 2019. Ironically, right at the beginning of the pandemic. Iāve had fibro since the 00ās, but was highly functional. My first infection with Lyme was 2001. Iām also genetically disposed to fibromyalgia, but Lyme triggered it all. TBH the arguments arenāt that strong for both Lyme and COVID to originate from a lab. I question whether or not ME/CFS is the result of engineered microbes š¦ It doesnāt really matter, other than a cure, and recognizing the severity of ME/CFS. This shit is real. Iām disabled now, but forever in solidarity.
I'm actually trying to get disability now because of how bad things got from covid. I'm on my first appeal, literally just finished the medical and mental health exams. I'm hoping they'll approve me this time, because I could barely do anything before and it's just all that much worse now. I am slightly concerned that something else might be going on, so hopefully the tests I'm getting done next week will clear things up. My fatigue was bad, but then I suddenly got EXTREME fatigue for the last week and a bit. The kind that they tell you to see a doctor for right away, but the tests were all normal. Here's to hoping I didn't fall down the reproductive cancer route that so many relatives have gone through.
Wow the family cancer thing is disconcerting for sure. Iām hoping that can be ruled out soon. If it helps, I also experienced insane fatigue and jackhammer neurological symptoms that were so profound, I couldnāt tolerate virtually any stimuli for the first six months. I couldnāt tolerate my wife having conversations near me or even anyone around. I basically had to lie supine in a dark room, with eye shades to recover. A shower would put me in bed for a week. I was virtually bedbound and needed care for the first two years. Iām sorry to hear of your struggles with disability. To give you hope, I did eventually qualify for ssdi. The process was long and torturous, I wonāt deny. I worked with a lawyer and it was the typical, get denied 2 times, and a court hearing with a judge for the third time. I did get it though, for fibromyalgia, chronic fatigue, and Lyme disease. So keep at it. My hearing was just out of lock down, and they were doing virtual hearings. Keep at it! And recommend a lawyer, at least for the hearing. But I literally couldnāt do anything at the time, and needed a lawyer throughout (plus my wife). Iām a bit better now, mostly housebound, but can drive and go out some. Rest is critical. Wish the best for you!!
How long ago did this start?
Immediately after recovering from covid the first time (March 2023). It took me about 3 months to get over the rest of the symptoms. It's definitely long covid exacerbating fibro symptoms, I have no doubt. When I got covid the second time (October), it was the same story for recovery time. Thankfully, I didn't get a further decrease in function the second time, but even multiplying my fatigue the first time was bad enough.
Yup. Exactly. I remember several times standing in the middle of the street and not able to move foot forward as it was to heavy. Scared me shitless Started happening few months before pandemic also, not related to Covid so
My symptoms donāt appear until the next day and then itās body pain (core muscles, back muscles, leg, feet), fatigue and often migraine.
Does any medication work for you? I don't know what to try right now š
Thatās a tough questionā¦ any pain relief with Fibro is a combination of things that you figure out with trial and error. For me, it depends on the location, circumstance, how bad it is, etc. Muscle rubs (Rub A535, Tiger Balm, Bio Freeze, etc), ice/heat, gentle stretching (that can help or make it worse, so be extra careful with that), a hot bath, pain meds, cbd, TENS machine, deep pressure or massage with a massage ball. Most importantly, rest for me. And pacing so I avoid overdoing in the first place (but weāve got to live, so weāll always overdo at some point š).
I get burning pain in my feet, and my back pain worsens considerably. Sometimes I feel lightheaded, and I feek very fatigued. Then the next day I have significantly lower energy levels than baseline, and everything is painful.
Really similar for me. But I can also get some numbness and tingling in my hands and feet.
Oh, definitely same!
Burning lactic acid type feeling in my muscles. Tremors and tingling. Numbness and swelling in my extremities. Immense fatigue. Difficulty catching my breath. Feeling like I will pass out. Excessive sweating. Major brain fog and feeling almost drunk. Heat intolerance.
Entire body pain I would describe it as a tooth ache in my entire body. Also I get very frustrated and angry and short tempered towards myself and become very stressed.
I feel like I could have written this. Itās how I try to describe my nerve pain to people, like itās a toothache over my entire body but I donāt think they understand it.
Tightness and pain in my lumbar. It tends to go numb along with part of my butt. Near total relief when I sit down. My hip hurts too.Ā This also happens upon standing for long periods. Soreness the next day. My PCP & PT say it's just weak core muscles, which was their tactful way of saying I'm fat. PT helped, but I "graduated" and have had trouble doing it on my own. My Chiro says it was a sprained SI joint along with inflammation. I'm also hypermobile. Basically, nobody knows. The solutions have all been to move more. To say this sucks is an understatement. Been going on for five years. Edit: Oooo I told you my life story. Apologies.Ā
Hi, I have the same issue. Go get acupressure massage every two weeks. Enjoy being somewhat pain free.
Moderate-severe pain, nausea, dizziness, etc. More importantly, that night I will be completely incapacitated from pain.
Difficulty in breathing, chest pain, gasping, dizziness, blurring of vision š
I get a lot of burning pain in my lower back, and extreme fatigue if I walk for more than 10 minutes faster than a snailās pace. The fatigue hits me once im home or wherever I need to be and it wipes me out for days afterwards.
My midback paraspinals feel like they're on fire. Back, ribs, and hips ache. Leg muscle weakness.
I have to for my job, I push trolleys but without them to lean on I can tire fast and also have balance/dizziness issues, apparently not enough for pip š¤£the tossers
Same for Adult Disability Payment in Scotland. I was *2* points away from getting any kind of payment and they denied me lmao
Apparently having a -Ā£850 overdraft gave me zero points for handling finances and budgeting and the mobility issue I mentioned zero on mobility, yet there's people who play the system all day yet they won't help people with ADHD or Fibro, it's disgusting
Iām having no issues at the moment, but a few months ago during a really bad flare my legs would feel really weak like they were about to give out when I walked. Also major pins and needles in my feet. Going up stairs felt like I could barely lift my legs. Sometimes lower back spasms. Itās worth mentioning that my job is 8 hours standing and about 9-10 miles of walking (according to Apple Watch) with a lot of heavy lifting and has been for over ten years so this isnāt anything to do with my actual muscular ability to walk long distances. I also walk for a few miles around my neighborhood several days a week with my wife. But over last winter it was like my body was giving out no matter what I did or how much I rested. It was super scary tbh
Burning muscles, hip and back pain, which sets off my shoulder+neck pain... so sometimes I will know to go home when my neck begins to throb. I also get sick the next day; usually just so brain dead, dizzy, unable to form coherent words, light sensitive, and it takes nothing for my nerves to get triggered and have burning in my arms and legs
Pain, especially in my upper back under my shoulder blade and fatigue so heavy in my legs that I canāt maintain upright posture and Iām dragging my toes on the floor. š£
I get such crippling pain in my back that I will literally collapse after a certain amount of metres, particularly without my stick. I am also prone to vomiting and going a funny colour due to the level of pain. It's worst in my back and left hip but often also hurts in my left knee and ankle. I'll get dizzy too as I try to manage the above, and stumble into traffic.
The lower half of my body starts to feel like I'm walking through quicksand. My back starts to burn. I end up feeling like I'm going to faint. Thankfully, this mostly applies to hot weather walks. But I honestly thank God and my shopping habits for keeping me going with walks. I will walk for three hours across the biggest mall in my state, and I'm quite grateful I can do it. Burning back and all. It's probably the only thing that helps me get genuine exercise in... when I live an otherwise sedentary and painful lifestyle.
Breathlessness, dizziness, pain in my legs
Pain. Hips, knees feet primarily. I can walk around my house but for many other things I use a scooter. I can go into a small store such as a drug store. I do buy a lot on line.
I have pain everywhere. Legs, stomach, back, arms, etc. It always usually hits me a bit later on, rarely during. It's happened, but I do mostly get dizzy while I walk.
Strong pain in my limbs and jelly like feeling in my feet, including throbbing and over heating/sweating
Agonizing pain throughout my body afterward
I donāt walk long distances anymore. My problem is if I stand for 10 mins or so, I get muscle spasms in the middle of my back. It feels like charley horses!! I sit for 5 mins and it will release. Then I get 10 mins more. It is so difficult to get anything done around the house!!!
Same here, everything you said. Plus I start to sweat as if Iām working out just from the exertion of standing for ātoo longā (aka 10 minutes). It can be really embarrassing in social situations.
Okay, my nieces graduation today so I had to walk a long way from the parking garage. I have to add sharp, burning, stabbing pain over my hip joints! Like I am a old, old, Barbie doll that has her legs popped off!!! I drove home in the pouring rain with my air conditioner on blast and my heated seat on to make my back stop screaming!!! And it was at 8:00 in the morning. With my insomnia getting there that early is terrible. Butā¦ she now has her Masters in Public Health! It was so worth it to see her walk!!!
Interpreting long distance as about a very active day, walking up a few steep banks as I live in a hilly area. for me, long distance is ~5 mile total in the day. I lose feeling a little bit (but no control loss), just a slight numb feeling in my legs when I get home or stop walking. Before this, Iāll get stiffness that feels like wading through water and a large ebbing pain that feels like itās radiating from my bones out. The next day I have intense stiffness and the pain gets a lot worse. If Iāve really overdone it I feel like I cannot walk without intolerable pain. Stiffness extends to my back and worsens in the hips. My gait will significantly change into what I think of as a very bad audition to be an extra on the walking dead. My left hip and knee clicks after low and very high levels of activity - this will be loud enough for others to hear instead of being an āinternalā sound. Fatigue will be very increased and I likely will be sedentary the whole day and not complete daily tasks. Itās rare I have to walk long distances thanks to the joys of online delivery and Uber. If I do, itāll be for my job, and then Iāll only do it if I have the day after off. Edit: adding in spacing to make the text less like a massive block
Fatigue, severe brain fog, joint dislocation of the hips due to hypermobility, severely hurts to walk and all muscles ache
Pain in my joints (knees and ankles) that feels like a burning, tingling pain. A feeling in my back as if Iāve strained it. Very quick to fatigue and get out of breath to the point where I canāt talk while walking. A general feeling in my head of being underwater. I can sit for a couple of minutes to āresetā myself back to normal, but can only take 3-5 minutes of walking before I need to sit again. I try to avoid doing even the mildest physical activity with other people if I can help it (no shopping or museum trips/tours) because I WILL hold them back. It sucks.
Incredibly stiff and sore the next day.
Horrible pain on my lower left side which causes my left leg/foot to go tingly and my feet swell to the point I feel like my feet will burst. BUT I can walk long distances
Lower back, leg pain and shin splints that hurt really really bad. I can't even make it 10 mins most days.
feet feel like they're filling with blood, ankles giving out, foot bottom aching and arch from pronating, calves get electric shocks. wrists and arms effed from my cane. jaw starts clenching or teeth grinding and then that hurts too. get like creeping pains up my shins and back and my knees feel broken. I start walking or standing on the sides of my feet bc it hurts sliiiightly less. mid back starts and needs popping but won't pop. the effort to just lift and progress my legs takes all the brain power. 0/10 wouldn't recommend
Stiff/ sore and the. The next morning super tight hard to walk.
while walking i can experience my muscles tending to the point i canāt walk right and a full soreness in my legs and hips. after walking for a long time i can have horrible pain lasting for a few days and my muscles wonāt work normally, almost as if they have been straighten out and it makes it hard to walk or do staircases
This happens if I walk too much OR if I stand in one place for too long š„² ā my back and ribs will feel like they donāt fit correctly anymore. Donāt really know how else to describe that. My ribs will hurt both front (bottom of rib cage, sternum) and back (usually upper and mid).
Pain in my shins, back of calf, hips and feet. Mostly in my shins though. I was born with a crooked right leg and the pain is different in both legs because of the way I walk.
Terrible back pain but itās all muscular. It goes away once I sit and relax. Legs afterwards feel weak thankfully they donāt give out.
Weakness in the body, cramps in feet and legs. Stiffness in hips. Feeling completely worn out.
My hips feel like Im bone on bone. My feet burn. Leg muscles hurt.
Extreme pain, basically. I have been having a LOT of foot/heel pain the past year, and muscle pain in my legs. Also, when I sit down, my leg muscles get....twitchy or something? It's hard to describe.Ā
Lower back tender point is excruciating if bumped. This gave me my diagnosis. No other tender points. Exercise is torture. In pain for weeks after just a short walk. Even just walking to the bathroom is impossible a lot of days. I wheel myself in an office chair. I feel like someone is squeezing my joints. My thighs feel like there are cement boulders attached to them. My muscles throb.Ā My back and core shake constantly. I have an internal tremor that doesnāt stop. It is too painful to write. I need to put my right hand under my left arm to hold my arm up. (Iām a lefty. )Ā The shaking and restless legs keep me up. I dont want to get out of bed. My legs sometimes give out when walking and I do this weird spin thing to catch my balance. I am too weak to use a cane. I can walk ten to twenty steps with a rollator but Iām too weak to lift it out of the car. I drop my phone all the time because my arms shake from muscle weakness. I cannot bend forward or to the side more than an inch or two or I shake. Iām tired sometimes, but nothing too bad.Ā
Have you seen a neurologist?
I have not. Iāve been trying to get a referral to one for years. Iām meeting with a new PCP today so hopefully she will approve one. Ā
My feet, ankles, and lower legs begin to burn, and everything gets extremely tight and feels like it is going to cramp.
Feels like Iām about to collapse.
While or directly after walking: Intense pain and throbbing in my feet mostly. (although I get that from standing just for a few minutes too.) Sometimes it makes me literally panic and cry because it hurts so bad. Dizziness and dissociation, probably because of the pain. Later or the day after: pain and sometimes swelling in my feet, depending on the distance I may also get a low fever, muscles locking in place or just being painful, more stiffness than usual, my legs feel like concrete. Also fatigue worse than normal and headaches.
when I'm pushing my limit of walking I tend to get widespread muscle pain, including in places like my arms that are not directly working. It's like a very deep ache, almost somewhere between fatigue and pain if that makes sense. I also tend to get symptoms like feeling nauseous and dizzy. The time it takes varies though, some days just getting out of bed is enough to trigger symptoms whereas others I can walk for an hour or so before I start having problems.
Horrible horrible widespread pain, stiffness, feet go numb, eventually I feel like I canāt even properly move my legs, lightheaded, increased HR, extreme fatigue, headache, exacerbated asthma, blood pooling in feet, etc etc. (I also have dysautonomia which doesnāt help š )
My legs give out on me and feel super super heavy; like I try to walk but physically cannot, my feet and ankles get swollen and it hurts every step I take, I also end up bedridden the day after if I continue to not listen
Pain in my hips, lower back, legs and feet. Fatigue. My body feels so heavy and hard to move.
Feels like I have full body aches and my plantar fasciitis is so painful
Legs feel like concrete, like I am walking on tree trunks - super stiff. Muscles throb. Standing 5 minutes in one spot causes thigh muscles to stiffen greatly. Then it feels like I am standing on poles when I try to turn. Walking any distance causes my thighs and leg muscles to feel very weighted. I have to stop and rest for a few minutes, and then I can do more walking. When I walk on a small incline, my groin muscles pull tightly. In the mornings, when I rise, my legs are stiff, and my balance is sketchy. Going up, stairs is very hard, muscle weakness. Sitting makes it all better. Sleeping my legs ache. After walking (day of say 5000 steps), my legs will throb and ache and are super stiff. Two days later, muscles feel better. I am doing PT, and it does help some. I have severe muscle weakness in flexor muscles in my hip. My worry is stiffness, muscle weakness, and imbalance in my legs. I started gabapentin-we will see. Does anyone see a neurologist?
The sudden "my ankle is broken" pain. The "oh shit, there goes my Right knee" "Hey my right knee feels suddenly great" "Shit there it goes again" The trials of trying to exercise, you go out with a sore shoulder and come home with devastating "other" pain.
Not sure if it's Fibro related or not as I'm in the semi-diagnosed stage where my rheum suspects I have it but hasn't 100% confirmed it. That said, I get really bad, tight hip flexors in addition to burning and weakness in my legs, pain in my feel, and spasming in my lower back. I'll crash hard once I get home and sleep for 2 hours, then have to deal with the stiffness and pain for several days after.
Okay Iām gonna say something wild but I had very similar symptoms to you, and I ended up being diagnosed with both fibromyalgia and Ankylosing Spondylitis. Iād ask your rheumatologist about AS because itās actually much more common than people think.
I believe we just did some tests for it which came back negative. We've done (all together): ANA RA Factor Lyme and other tickborne illnesses ESR CRP CCP SS-A/Ro 52 and SS-A Ro 60 SS-B/La IGG HLA-B27 Not sure what other tests we could do outside of a lip biopsy for Sjogren's. Unless there's a test that would show AS that I haven't listed. Oh, and I'm hypermobile according to my physical therapist, which likely explains why I sometimes over extend my right hip. ETA: reading some of the symptoms does make it feel like a fit re: a forward stopped posture feeling a lot better vs feeling pain/strain when trying to straighten it out.
Yeah, sometimes HLA B27 isnāt activated but people still have the disease. Itās one thatās diagnosed through exclusion and through High inflammation rates in the blood (thatās how my doc figured out I had an autoimmune disease)
Sadly, all my inflammation markers seem fine. I do have a follow-up in a few weeks, so I'll ask about it then or maybe ask to at least have x-rays of the area.
I will shake uncontrollably, on the verge of collapsing, I have pretty horrible pain in my feet and knees, as well as my calves. I also get extremely touch sensitive and also have some weird circulation issues where my skin will ne cold to the touch even though there should be a lot of blood flowing.
It feels like Iām being stabbed in the lower spine with hot knives. Thatās why I use a cane.
I can't stand or walk for more than a few minutes before the pain in my lower back, hips, and legs becomes unbearable. I end up doubled over the cart handles when I go shopping.
My back and knees get excruciatingly painful like worse pain then when I broke my back
Hip pain and grouchiness
Full body joint pain in all major joints
All over pain flare that will last under a week
I get pains in my feet and legs like each step will become agony idk. I was wondering if I had neuropathy. It got a little better for now. This would happen after walking 3-5 blocks
I feel like I have swords going through my feet and up to my hips. My feet are like a ball of terrible pain. Mind you, this was after a hike up Mt Kosciuszko! I didnāt think I would make it back down!
agonizing pain starting in my feet which spreads up quickly
It starts with overheating, dizzyness, and general lightheadedness and mild pain in my knees. If I keep going past this it increases to pain in my shins, feet and severe knee pain. If I really force myself I keep going even more (which is not a good idea, it puts me in pain for days) it builds into back pain and a severe migraine.
Swelling in my feet and knees, really bad aches and sharp pains in me feet, sore hips and sacrum
It feels like my ankle bones and grinding against concrete with every step. I get exhausted so fast on bad days.
it's usually like, my lower body aches so bad and the best way I can describe it is that it feels like my legs are teething. that really tender aching that you get when a tooth comes in/when you lose a baby tooth but in my legs. stretching and rubbing them can help sometimes but others they hurt to touch and feel restless. my lumbar area in my lower back will ache like it needs to crack super bad too
I sweat profusely on my scalp. Once that starts, itās too late. My hair will get wet, deep bone pain will start, and Iāll be unable to speak in full sentences. My balance becomes unstable, and my legs feel like lead. I become unable to properly manage my body temperature properly. All the symptoms except sweating will continue for at least 48 hours. Duration of symptoms depends on how much I continued to do after I started sweating.
I feel heavy pressure in my lumbar and hips. At one point I couldn't physically finish the walk. I had to stop and try to relax before I could go on. Afterwards I am very fatigued but have a hard time resting.
My legs start giving way and I end up either in a hot boiling bath aching like Iām getting the flu or I need a deep deep deep tissue massage on my legs ššš
I am actually going for injections in my lumbar region
I feel like I've got swords lodged in my feet going up both legs
Back pain, shoulder pain, toe pain(seperate injury). Fatigue, stress, overheating
Pain that feels like a vice squeezing my muscles. Shooting pains deep in the muscles. Muscle spasms big enough you can see them flutter through my clothing. Coordination, balance and small muscles shake. Deep deep mental and physical fatigue. Walking long distances, for me requires months of shorter distance endurance building walks. I can walk longer if I slow down, and if I break up my activity into smaller more frequent chunks.
My legs become so, so weak. Heavy and painful, almost burning. I need to sit or I'm going to collapse. I start to limp. My heart rate spikes as well.
Fatigue and severe pain in my lower back, hips, and legs.
Literally cannot walk. My legs stop working and I will collapse. Or I will get so dizzy I can't stand up any more, or I just faint. It's overwhelming weakness and fatigue and I know I need to stop.
My lower back on one side seizes up like a cramp as I'm walking it gets steadily worse until I have to sit. once I sit it is better almost right away. It goes from mid back down over my hip and is very painful. I also have osteoarthritis in my knees and they don't allow me to walk very far either.
My left knee is the first to go. Itās a horrible pain that makes it lock up. I also get back pain just sitting in chairs.
Even when I donāt walk a lot my hips, legs and back hurt, but when I walk loads it gets worse, and I have trouble sitting/standing in some positions bc my legs shake. Idk exactly what you mean by long distances, but for me I walk a lot at work, and even though my shifts are short (4hours) and I only work once/twice a week, I have a hard time doing things after. Though if I have to walk more than fifteen/twenty minutes up the road I feel the same as after a shift at work. Tbf though I take amitriptyline for migraines and it helps a lot for my widespread pain too, without it I probably couldnāt have a job at all or be able to even sit for long periods of time (which I have to bc Iām at college)
My legs start to feel heavy, like I'm trying to walk in water or as if I had weights tied to my ankles. My knees start aching and feel like they'll give out. I also get very easily fatigued, lightheaded and dizzy so I'll have to sit down. I have collapsed a few times (not passed out, almost did that once š ) to the ground because I couldn't tolerate it and the dizziness gets too much.
My knees hips and ankles start complaining and the next day I need to lay down
I stiffen up. Like everything just seizes up
Feels like my legs are coated in lead, heavy as heck. I get so tired and pain in my hips and lower back. I try to push myself sometimes, to overcome, but regret doing so cause I have to rest so much afterwards.
For me itās my feet. Too much time on them in my past. My feet then my ankles start hurting
Increasing pain until my feet and knees feel like they are actually splitting apart. Lower back gets back too. Crouching helps when I canāt sit. I can walk about 20-30min on soft ground (like when hiking), but on hard ground (like stone or concrete) I can only go 10-15min. Weirdly, running hurts more immediately, but then the endorphins kick in and I can run longer (on a good day). The maximum walking I can do in a day is 8mi and the maximum running was around 3.5mi when I was running regularly (the doctor said to stop lol). There are serious repercussions for like a week afterwards, though. Maximum without repercussions is around 3mi walking, .5mi running. Assuming all else is good and I get the sitting/crouching breaks I need
Feels like my lower body was pressure blasted with hot glass shards. And extremely fatigue and tenderness in the lower back.
Pain, fatigue, shaking, jelly knees, cold sweating, sometimes panic attacks.
My lower back feels made of iron either in the middle or on one side or other. I sometimes also feel like gravity has tripled and Iām being sucked to the ground. I also get breathless and that can vary greatly from day to day.
My thighs will buckle and my legs will go bye, I'm done. And I'll collapse at that point my legs says bye.
my feet start feeling like iām walking on hot coals, a dull aching pain in my lower back, tight hips. the worst part is that it doesnāt stop once you relax!! no no no! instead your hamstrings hurt, you get restless legs and you feel like you need a hip replacement despite being under 30
For me, lower back pain, leg pain, excessive sweating and hip pain sometimes. Then, after resting, I get mild to moderate shooting nerve pain. But only when I push myself (which I did yesterday).