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Describe your Fibro?

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Posted 12/3/2011 2:39 PM (GMT 0)
I have had Fibro for 7 years, and have recently become interested in the way others describe their pain/fog etc
It is often so difficult to explain to other people how we feel, but I've found that a short descriptive phrase can really help to paint a picture.

I'll start with mine, and would love to hear if anyone has any others.
When I first wake up there is an elephant sitting on my whole body.
On bad days I feel as though I've been hit by a speeding double decker bus.
My head feels like mashed potato.
I often wear a lead overcoat.!

I'd love to hear from you.
Posted 12/3/2011 3:44 PM (GMT 0)
I feel like my body is so heavy when I first get up. I am in a fog until I take my meds. I ache all over.

Yes it is hard to explain. And I don't think that a person without it would get it, so I don't even try to explain. My muscles hurt all the time. My hips hurt mostly in the morning until I get moving around.

I hear you about the lead overcoat. I know that feeling. I guess that is where I said my whole body feels heavy.

I really don't like to talk about my pain, so it is hard for me to share. And I think of it more. I like to ignore it. It does me no good to think about it.

I hope that others share with you. I think you pretty much summed it up. Probably for all of us. lol...

I hope that your day gets better Beadyeye...

OH, I just realized this is your first post. Welcome to the forum... I think you will be glad that you joined us. I have to direct you to a thread called 'fibro101'. It is the second thread on the forum. It is very helpful. Please take the time to look it over...

Have a great day...

Hugs, Karen
Posted 12/3/2011 3:56 PM (GMT 0)
I actually am debating keeping a pain/activity/food journal, to try to more accurately chart for myself what's going on. I suspect that something new is happening, but want some evidence. It might be stress/anxiety related.
Posted 12/3/2011 4:32 PM (GMT 0)
Stress and anxiety really effects our fibromyalgia. I think it is one of the worst things besides cold damp weather. Try to keep the stress down. Some things aren't worth worrying about as they effect us so much.


I wish for all a stress free and pain free day.

Hugs, Karen
Posted 12/3/2011 11:02 PM (GMT 0)
Sometimes my joints have pieces of glass inside them. I have that lead overcoat too. Usually I tell people that my muscles feel like I've overdone it the day before. The pain that you have in your muscles after you've pushed yourself too hard. The thing that bugs me the most is that the pain in my muscles have slowed me down so much that I can't walk as fast as "normal" people do.

But, like the other's have said, I don't tend to talk about it too much.
Posted 12/3/2011 11:34 PM (GMT 0)
Welcome, Beadyeye. I hope you continue to post. This is a very interesting topic. Probably all of us try not to focus too much on the specifics of how we feel, but I'll try:

I usually feel like I'm moving through water when I first get up. My muscles feel stiff and heavy. I have to get up at least a couple of hours before I have to be somewhere because of this, and also because my food seems to digest slower in the morning. Rushing after breakfast makes me nauseous and dizzy and, I suspect, tends to trigger an episode of tachycardia.

I'm better once I get moving. There are always the same-old aches, but usually also some surprise pains (hand, crotch, heel, head, hip, ??) that decides to accompany me for god-knows-what reason. Always hoping that places will have handicapped doors because opening heavy doors can greatly increase my pain for an extended period of time (until I get a chiropractic adjustment.) Lifting just about anything, and uneven streets, do the same thing...so feeling cautious is definitely part of my personality by now.

I'm always deep-down cold. If I could walk around with a hot bathtub around me (can't picture it - I'm not very visual, but I know it would feel great!) I would. I'm the baglady-looking person with at least 3 layers on until June!

The fog - ok - back to water. Not only my body, but my mind, is always trying to push through it. I have to sift through layers repeatedly, to get back to whatever concrete thought I had before. It's there, but it's hiding...hiding very well most of the time.

I feel like I'm forced to live "life lite," - tread carefully, don't overdo anything, don't underdo anything, don't get too upset or too excited, just take the middle road and try to think positively.

Debbie
Posted 12/4/2011 12:01 AM (GMT 0)
Well put Acheybody!

I'm right there with you, actually I'm right there with all of you that posted. Wake up I can't close my hands because they are so stiff, getting out of bed is a chore. I suspect it's that lead coat you all have been talking about. I try to eat a little something as soon as possible so I can take my meds right away. You all were talking about the muscle pain..I always tell folks it feels like someone is pinching you as hard a possible but that pain doesn't go away..

I'm trying to find that middle road. That has been one of the difficult things for me..there are days when I don't feel like I've done too much and then BAM, I'm down for 2 days!!
I've been searching for why, when, what and how? I HATE this illness..I'm finding that when someone asks me to perform something simple but out of my normal routine, out of my safe zone. I freak out..It's like I can't process what they are saying to me. My psychologist says just tell whom ever I'm talking to that I'm not on my mark right now and I'll have to get back with them..I haven't been on my mark since 2008!

I also agree with the other post that said they also experienced the occasional pain from outa know where, usually in a place I've never had pain before and then your left with wth? and if you aren't careful your brain starts running wild with????

I have found that with fibro, you need a great sense of humor and a positive attitude! Even when there is nothing to laugh about keep putting one foot in front of the other and hope you don't trip over your own feet!!

Jerrie/FibroNana
Posted 12/4/2011 12:23 AM (GMT 0)
I am right there with ya about the heavy coat feeling when I'm in a flare. I feel like I have played tackle football with a bunch of men and it's the next day when I feel all the bruises all over. OR either someone hit me with a baseball bat all over in random places and I can feel the bruises when I walk. My arms "scream" at me when I try to pick up or move something heavy and my body hates doing anything out of the ordinary. Some days I can lightly rub my skin and I feel like I have a sunburn. Oh and the sick feeling, I feel sometimes like I have a 24 hr virus that comes on quick. My eyelids...yes my eyelid muscles even hurt. When I have a flare from over doing things, it feels as though someone hit my over the head with a club and messed my whole computing system up..lol. My fog is worse and I get off balance, dizzy and I feel sick.
I could go on...lol
Karen
Posted 12/4/2011 9:37 AM (GMT 0)
Thank you for your replying, I think these visualisations/illustrations can help us to explain to others the effect Fibro has on us.
I hope we'll get more!
Posted 12/4/2011 9:59 AM (GMT 0)
Hello again. I so agree with those who have said they don't like to talk about the pain and other Fibro symptoms.

But that is what lead me to post this thread. I find that creating a visual image in my head, (and preferably a funny one) really helps me to lighten the load/mood. My family say it helps them too, to imagine how I'm feeling.
Keep them coming.
Posted 12/4/2011 1:06 PM (GMT 0)
Hi, Beadyeye, and welcome!  I'm so glad you found us and joined in.  I gave up years ago trying to explain fibro to people.  No matter what, they really can't understand unless they are in our shoes.  I find the best response to people is that you suffer from chronic pain.  Period.  That doesn't take a lot of explanation and people do understand pain. 

 

If I am having a "bout" with the good old fibro fog, I just say that with fibromyalgia you have cognitive memory problems.  That usually does the trick, too.  Most people don't what to "go there" or they don't know what cognitive memory problems are and don't say anything because they don't want you to know that they don't know about cognitive memory problems.  smilewinkgrin  

 

Doing these things keeps me from trying to explain something I know they really won't understand anyway.  Because there is rarely a response, I am not getting frustrated by people who refuse to try to understand.

 

Be sure to check out Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symtoms and A Thorough Explanation of Fibromyalgia.  You will learn a lot there.  There is a good link called The Spoon Theory in Fibro 101 that could possibly help other understand about fibro, too.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 12/5/2011 3:09 AM (GMT 0)
Like a bad achy flu without fever. Can't do things very long, try to space out tasks. Stress makes it worse. Wake up feeling like I can't move, extreme pain that nobody can see or understand, so I don't bother.
Posted 12/5/2011 9:21 AM (GMT 0)
My oh my...Applevenus ...I could have wrote that post. I feel bad for thinking this way but I am glad someone else understands, at the same time I would not wish this on my worst enemy. In other words I am glad you understand but I am sorry you feel this way.

Love your new site.

Take care, Amy turn smurf smurf smurf turn
Posted 12/5/2011 9:37 AM (GMT 0)
Yesterday, Zorro decided to stab my lower back with his sword, he left it there all day!!
Posted 12/5/2011 9:27 PM (GMT 0)
My symptoms come and go, wax and wane and change.

I often feel like I have 100 pound weights tied to all my limbs and someone opened up a drain at the bottom of my feet and let the energy out.

I will get shooting, stabbing pains that will shoot around my body and come suddenly and leave just as suddenly, but be painful enough that I cry out, even in public.

I sometimes feel like I have the flu (achy all over) yet I don't.

My skin is very sensitive and will become so irritated (with no visual indication) I find it very difficult to find clothes to wear to work.

I am overly sensitive to noise and odors.

Sometimes I don't know which way right and left is or east and west , and I can't find words for simple items and I forget things (like leaving my friend at the restaurant by herself because I forgot our date).

Fun stuff like that... turn

Posted 12/5/2011 10:17 PM (GMT 0)
lets see.........

I feel like I could walk forever but cannot make it up one flight of stairs, especially if I have anything in my arms.

No matter where someone touches me there is a very sore bruised feeling but, of course, no bruise.

For an hour or two after opening a jar I will feel as though I sprained my wrist and because of the fog will wonder where and how I did it?

I will ask my hubby to please put the next load of wash in the toilet, I mean the shower, I mean....you know, the thing that washes the clothes!!

I used to be an A+ housekeeper. I never left an unturned stone, so to speak. Never a dust bunnie or a dirty dish. My hubby still tells people not to set their glass down when empty....but those are the before fibro days. Now I take a quick survey of the room and if it "looks" presentable, it is!

And the noise, the lights, the smells, the pills, the doctors, the ............you get the picture.
Posted 12/5/2011 10:39 PM (GMT 0)
Hi Beadyeye :)

My fibro is fickle...forever changing symptoms....one minute, I might have the sensation of creepy crawlers going down my backside, cold water dripping down my leg, twithches and needle stick pain jabbing me or the feeling of being stretched on a rack with various body parts in tight vices or the feeling of being attacked with baseball bats and thrown under a moving vehicle...experiancing bone crushing pain. At times it feels like I have hot oil coursing through my veins. Limbs can feel like dead weight and my brain can feel like it gets stuck on pause.....other than that I feel great, LOL :)

Hugs, Robin
Posted 12/6/2011 3:42 PM (GMT 0)
My fibro is all over the map. I have only been diagnosed, not really treated. Of couse this is my own fault, because when I tell people I have fibro, almost all of them say something like, "Isn't that a diagnosis of basically the doctors cannot figure it out?" Most people who do not have it think it is a made up illness. I am frightened of the meds they generally prescribe for Fibro, because my father took some of them for neuropathy and they basically played a role in our loss of him. So I have not gone to the rheumatologist anymore since the diagnosis and explanation of the typical meds prescribed.

Now describing my symptoms, of course, depends on the day. I also often have the heavy feeling everyone else here describes. My muscles often feel like they have nails in them when I walk around or that I have been rolled by a steamroller. My husband calls it "roving pain". I never know where it is going to hurt and I often feel like I am just whiny and should keep my mouth shut.

I loved acheybodys' description and I am glad to know I am not the only one with crotch pain. Sometimes it's not even just pain but ultra sensitivity.

I often feel like my skin is overheated, but to anyone else it feels normal. It's kind of like an all over blushing or flushing that is invisible. The skin does not actually get red. I have terrible night sweats, not sure if this is related to fibro, since I have not seen others describing it as a symptom.

One of the biggest things I have noticed is that my everyday simple bumps and bruises are more intense. Like say I bumped my head on a cabinet in the kitchen. Suddenly I will have pain down my neck and into my back, like a large bruise is spreading from the impact site. I broke my pinky finger on a door and was almost bedridden with a flare for several days. I get severe heartburn from the pain medication, and then suddenly my entire neck will hurt like I swallowed an eightball.

I also get the sensation of crawling in my muscles, sometimes like a light electrical charge. Or the sudden sensation like a mouse just ran up the back of my leg. I get some strange looks when that one happens, because it startles me.

The symptoms in my brain are an almost constant fog. I can no longer find the words I am looking for in a conversation and I am forever using words like "thingy", and "stuff", because I just cannot seem to find the words. I used to be a writer when I was young. Purely a hobby, but I was decent. Now I am embarassed to read my own writing. I know that my vocabulary seems to be getting worse with age.

Hopefully all will improve as I am determined to get back in touch with my rheumatologist and try beginning treatment. Has anyone here had any actual improvement with treatment, or are some of you having better luck with diet modification?
Posted 12/6/2011 4:08 PM (GMT 0)
Saphire,

Changes in my diet (and I've tried many) haven't done anything for my fibro, but I know it's helped some people. What treatment with meds does for me is keep the pain level down for a few hours. And, with Tramadol, I'm trying to use that window of opportunity to actually push through it and be more active...mallwalking almost every day, slowly increasing the distance; lifting a few more objects myself instead of waiting for someone else; doing more stretches.

I'm hoping to eventually quit taking it, but who knows. My doctor is all for this idea, and doesn't worry about the low dose I'm on. I'm kind of weighing the health benefit of being more active (esp. cardiovascularly) against the downsides of taking any med.

But your post did make my eyes widen, because of what you said about your father. Mine also died after having neuropathy for several years - in fact, the death certificate said, "progressive polyneuropathy," although a doctor at a university hospital suspected a form of ALS....it happened so fast, we never knew for sure, and it still eats at me. No one mentioned the possible role of any drugs.

If you don't mind my asking, what meds was your father on? By the way, I'm sorry for your loss. You are so young to have lost your father!

Debbie
Posted 12/6/2011 4:35 PM (GMT 0)
Thank you Acheybody for your reply.

My father was put on neurontin for severe neuropathy in his foot after an automobile accident that broke every bone in his foot and compound fracture of the femur. His dosage was progressively increased until he was beyond the maximum recommended dosage. He began having some pretty severe panic attacks, which he attributed to the neurontin and the high dosage. He discussed with his doctor and knowing him probably demanded to come off of it. The doctor told him how to decrease the meds slowly, but did not stress to him the importance of it. My father came off the meds all at once and had a total meltdown. Severe anxiety, panic attacks, depression. He then started being treated for these symptoms, basically ignoring the pain he was having from the neuropathy which, no doubt was helping to feed the anxiety and depression. Visious cycle. It took almost seven years befor my father finally passed from "failure to thrive" at 64 yo this is what it said on his death certificate. while I don't ultimately blame neurontin or the neuropathy for his death, I believe it definitely played a role, partially in masking what might have been the real problem, like possibly, fibro, or I have even considered the possibility of Huntington's Disease, and something called frontal lobe dementia. I really have no idea what happenned. My father went from being a very strong, hardworking, man to being unable to decide whether to take a shower or not. Other symptoms he had were, parkinson's type shaking, with no brain image signs of Parkinson's. He would sweat profusely and was always thirsty. If he drank a peach drink he would smell like peaches in a matter of minutes. He fell a couple of times in the last year of his life. His balance was terrible. He broke his wrist in a fall and not long after that he fell and broke a rib, which punctured his lung, and caused a pulmonary embolism. Why the death certificate said "failure to thrive" I am still unsure. I am scared to get on any drug that I cannot just stop taking when I want to or need to. I will forever worry that I am destined to this same fate, or something like it. Not knowing what is causing my illness wreaks havoc on me.
Posted 12/6/2011 11:01 PM (GMT 0)
I'm brand new to the forum, but wanted to share what each day is like for me...
Waking up isn't so bad for me...yet, but within 30 minutes of waking, I'm exhausted and feel like I'm getting the flu. My eyes burn everday, all day. It seems like a struggle to just breathe..I love the lead coat description, it's prefect! I drag myself to the shower, but the water hitting my skin, the razor against my legs, and just washing my body hurts, like my whole body is one big bruise. Washing and/or combing my hair is exhuasting! My shoulders and back are in constant pain. Sometimes my shoulder will just freeze and I can't move it..the next day, it has somehow spread to my other shoulder!! I feel like I am walking around with sand bags tied to my limbs. I try my best to hide all of this from my husband..he tries, but he doesn't understand. One thing I will never admit to him..is that each time he hugs me or holds me, it hurts. I cherish these times too much to share my actual pain. Sometimes even my scalp hurts!! How is that even possible?? I am ALWAYS freezing and wear layers no matter what. However, my doctor put my on 50mg of Tramadol, and it really works well for me. I absolutely hate being on pills and I fought it for awhile, but finally decided that I couldn't live each day like that. I had no quality of life...When people find out I'm on pain medicine, I get the "oh you're one of those people" looks...like I'm some kind of drug addict. In fact, I recently got new insurance and had to change my doctor. I am terrified that when I meet with her and ask her to continue my Tramadol, that she will assume I am just looking for pain pills..My previous doctor and I tried everything before settling on Tramadol. I used to suffer from migraines..got them out of nowhere at age 27. The only thing they ever found wrong with me was a jacked up sinus. I had surgery to correct it and thought that maybe that was the answer..they told me that I had basically had a sinus infection for 3 years and that my fatigue and pain could have been my body trying to fight if off all this time..I can't describe my disappointment when, after the surgery, the symptoms returned. There have been days that I really wondered if I wanted to live anymore...I hate to admit it, but it's true.
Posted 12/7/2011 1:02 AM (GMT 0)
Wow sdjenn. I am one of those who could not take Tramadol. It makes me feel way too strange. It makes my heart feel funny.

I have been trying to avoid the meds, as well. I will admit I have almost stopped shaving altogether. Even when my skin does not feel bruised trying to get to my legs for long enough to get the entire job done is almost impossible.

As far as the sinus surgery, it could easily be the migraines are still from sinus and everything else is fibro. I honestly think surgery caused my fibro. They say it often occurs after a trauma. Keep your chin up and avoid dark thoughts, they will not help the pain. They can actually make it worse.

Good luck and I will try to send good day vibes your way.
Posted 12/7/2011 1:44 AM (GMT 0)
I'm sorry your father went through so much, Sapphire. My father's story is different in some ways, and he was much older (87) but there are similarities - Hospice stuck the "failure to thrive" label on him, too, although we had a pretty good idea it was ALS....which they didn't know how to treat.

He was perfectly coherent when he went into the nursing home - he just couldn't use his muscles. He was a retired professor, and a track athlete well into his 80s, more interested in people than anyone I've ever known, sharp as a tack and discussing politics with the staff. He knew just where he wanted all his 100 or so books placed.

Within 3 days, he couldn't understand why there was a football game on in his room - was it just for him? (It was the TV.) Why does the room turn into more rooms at night? Turns out, they had put him on Ativan, because he became "agitated" at night. Yeah, right. Probably asked questions. They wanted him easy to manage. It took days to change the order, and he was never the same after that. I'm still bitter.

I'll stop here, because this wasn't the original topic (sorry, Beadyeye!) Just wanted to concur about drugs' weird effects. Especially with older people, but with anyone, as my doctor says, any drug can have any effect on an individual.

Debbie
Posted 12/7/2011 3:56 PM (GMT 0)
In the mornings i always feel stiff and heavy (wich is obviously very odd since i only way about 120 pounds) it's a little like carrying the weight of the world on you shoulders but fysically and not mentally.
Also i feel exhausted like i've slept one hour in stead of a full night.
After i've got up and had my first coffee and my meds i start "waking up".
Allthrough the day i get pains and aches in various parts of my body, it's like a daily surprise party! Where will it hurt next? Pain can vary from a deep throbbing type of pain to something similiar to being stung by needles.
My hip is my problem zone and by the end of the day this is where the pain is worst, it can sometimes feel like an all consuming fire is going on in my hip and upper leg.
The fog i find difficult to describe. It's loike when someone asks u something, u can see the answer in your head, but it's stuck in goo, it's covered, and the more u try to think and panick the more it dissapears all together.

Thats how it's like for me.

Fiona
Posted 12/7/2011 5:48 PM (GMT 0)
Welcome Beadyeye, Saphire380 and sdjen.

I read through all the posts on this thread and I think I could relate to all of them in some way. The lead jacket for sure. I also carry a handbag which must be full of rocks. Flu without fever I experience most of the time. I have noticed some days are better than others.

I like to describe what I am like in the mornings by calling it, the Frankenstein walk. It gives me a little bit of humor so that I don't feel so sad. Each day when I wake I actually wonder for a minute or 2... today will I feel better? One of the hardest things for me with Fibro is waking up every day again... with the unrelenting pain and having the realization another day I must get through somehow. Each morning I hurt, no matter whether I've had a good night sleep or not. In fact nights when I sleep really well without a lot of waking or tossing and turning, I sometimes feel worse. It seems my body is just that much more stiff and sore because I must have slept in the same position all night. ? IDK, just my theory.

I wanted to suggest to sdjenn, have you tried a water saver shower head? I used to complain about the same thing when I took a shower. People looked at me so weird! How can a shower hurt you??????? It felt to me as if the water was beating me literally. By accident we received and energy saving shower head through an energy program I signed up for with my local utility company. I had my husband install it and I was thrilled because the shower no longer hurt. I also purchased a shower chair. This has also been a lifesaver as sometimes just standing up I would get dizzy, afraid I might fall or just didn't have the energy to stand there that long.

I have actually started to tell people when they hug me - how they can hug without it hurting so much. My husband likes to stroke my head or my hair and I finally had to tell him I am SO sorry, but honey that hurts me. After awhile I was just unable to allow him to keep doing it because I began to resent him. I know crazy huh?

Pain moves around like others described. Daily it is all all over, general ache with constant fatigue. One day its my legs on fire, the next is my hip, shoulders, arms or hands. I can type like crazy, but I can't write very long with a pen as my hands will hurt really badly in about 10 minutes.

Fog, fog and everywhere fog. I also relate to the not being able to find the right word when speaking. This is frustrating for me and it makes me feel so dumb sometimes. It is embarrassing. I write everything down and keep a monthly calendar for appointments and bill paying as such. I WILL FORGET if I don't. I sometimes send myself emails.

Overall a positive outlook helps me the most. I have seasonal depression, so right now is the most difficult time of the year for me. Thanksgiving through January. By Feb, my thoughts of Spring drawing near pull me through and I notice every intricate detail, from the longer days to the 1st buds on the trees. Each one marking progress to winter being over. I've been having a pretty difficult time of it, Fibro and depression, cold makes me hurt much more and mental positivity is a constant struggle.

Soft hugs to all
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