just need to vent/whine/complain a little...

hope23

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feeling a bit shaky today (as in weak, muscles not wanting to cooperate)
Lack of strength and spasmotic changes in strength is such a frustrating aspect of fibro(for me anyway) and its not really one that google(i know, dont judge, the info on Google is only as good as you backround understanding and knowledge base of a particular as a whole, but its hard not to google) talks much about either. This is a frequent (daily) issue for me whether its my hands/wrists dropping stuff for no reason when picking it up all was fine and then my hand like just went full relax no control over the muscle joints, my other major prob is left leg/side/SI region this frequently gets 'attacked' (not the right word but struggling to think of another that explains what i mean) and i end up on crutches because the leg/side is excruciating to move and has no strength and will randomly give out under me. And at this point majority of people jump to oh you must have sciatica, nope none of the tests(stretches that if you have sciatica will aggravate it or you wont be able to do it as its too painful) so not sciatica and my doctor agrees having carried out the 'tests' for sciatica.
I feel like the muscles not cooperating is one of those background symptoms that isnt often talked about and for me this extends to going to the toilet as well, getting my muscles(either set) to cooperate to do the business is a battle(again not the right word but cant think of another, i think its more that the battle is to not get frustrated and stressed as both of these can make all symptoms worse) in itself lots of days.

And for me this isnt new, its been part of my fibro journey almost right from the start.
For me its one of the biggest frustration points as im like i know my muscles know how to do what im asking but theyre just not cooperating.
I feel your pain cookiebaker
 

cookiebaker

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I feel like the muscles not cooperating is one of those background symptoms that isnt often talked about
Yes! completely agree.. (can commiserate with the toilet aspect as well) It's like I have NO strength anymore.. and I am constantly dropping things as well, the hands just cant handle gripping things very well anymore - and the arthritis makes it that much worse.

Friday was a really bad day... was getting major "stabbing" pains in various places throughout the day - felt like someone was taking a red hot ice pick to whatever part of my body they chose to attack next.. might be the foot, palm, one time it hit my forearm, just below the inner elbow - that one was so bad i cried out and the dog came over to make sure i was ok.. in between those, i would get this weird feeling all over, like being electrocuted, but at a low amperage.. and all the muscles were trying to twitch at once.. just the strangest feeling.. also left me feeling very weak..
I called the clinic's nurse line and asked if I should be seen or not (trying to explain to her what I was feeling - and thinking they probably would not be able to do anything for me anyway) Nurse was mostly concerned with the feeling of weakness and the possibilities of falling and getting hurt worse.. so, off to the clinic i went.. Tried Urgent Care first, but the provider there suggested going over to ER as they have better access to things that Urgent Care does not - so off to ER..
ER drew bloods and put me on IV fluids (in case i was dehydrated) also gave me a dose of Toradol in the IV, and a muscle relaxer.. to help with the muscle spasms.. after a couple of hours & blood work coming back all good, the "electrocution" feeling had settled down quite a bit and I was released to go home, with a prescription for cyclobenzaprine (muscle relaxer) - I slept like the dead that night.. LOL between the toradol and the cyclobenzaprine, yeah, i was sleepy.

And so far, so good.. I still get the occasional stabbing pain, but not nearly as bad, and the all over "electrocution" thing has pretty well settled, too.. might get that once or twice a day now, instead of nearly constant. I slept reasonably well Sat. night too..

and I got my other prescription - the low dose N - and started that Sunday night (supposed to take at bedtime) - still far too early to know if it is going to help or not.. fingers crossed, tho!

only one more week to the first test injection on the neck..
 

hope23

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And dont forget the feelings of like spiders crawling or something touching you when there is nothing there 🤦‍♀️

Its been a rough 3.5month flare up and can definitely say i am well and truly over it, and its just getting worse, now been on crutches for 7/8 days with my left leg/side from bottom of my ribs down, has no strength and randomly will give out, excruciating to move or weight bear, and surface sensation is way reduced but the varying types of pain feels like a rollercoaster ride i cant get off.
 

cookiebaker

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And dont forget the feelings of like spiders crawling or something touching you when there is nothing there 🤦‍♀️
yes.. and the feeling of water drops hitting you.. and there is no way that should be happening, no where near water.. 😒
just a never ending joy ride.. not.
 

hope23

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yes.. and the feeling of water drops hitting you.. and there is no way that should be happening, no where near water.. 😒
just a never ending joy ride.. not.
At the moment my calves and left leg/side are diabolical from spasms, twitches full on unabating cramp in pretty much all the muscles there and swatting at my legs cus it feels like a mixture of needle pricks, spiders crawling low level electric shocks and then lack of actual surface sensation.
Best joy ride ever..... not!!! I want my money back 🤣
 

cookiebaker

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Whelp, had my 1st round of test injections in my neck early this morning... bilateral at C4, C5 and C6 - so a total of 6 injections (3 on each side)
even under sedation it hurt - i honestly dont think they give the numbing agent enough time to work. But i got through it...

the bad news is they did not give very much relief overall... maybe 35-40%...and i felt very much off balance for most of the day - not dizzy, just unable to really control where my feet were going....
Not sure what will happen from here.. I will be getting a phone call tomorrow asking how much relief i got.. Will have to wait and see what is said during that call.

needless to say, i am a bit disappointed and kind of bummed that the injections didn't work very well this time... when we did the lumbar injections I got better than 80% pain relief, so I was hopeful it would be similar with the neck.. but not the case. 🥺
 

hope23

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What kind of injections were you getting?
 

cookiebaker

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What kind of injections were you getting?
cervical medial branch blocks - was a test run to see if nerve related pain in the neck, arms, hands, etc, is coming more from the facet joints or elsewhere..
if most of the pain was from the facet joints (due to arthritis or other degenerative issues), i would have had much better results, and we would normally move forward with a 2nd round of test injections, to verify that yes, this is the case... then go on to radio frequency ablation, where they burn the small nerves that feed the facet joints.

That is what i had done in the lumbar region and did get a lot of nerve pain reduction there.. Have actually had the lumbar region done twice now... 1st ablation lasted about 8 months (average duration is 6-10 mo before the nerves regenerate) 2nd round was just a couple months ago...will have to see how long it lasts this time.

The problem with my neck is the arthritis is apparently more severe than it is in the lumbar region, so while some of the pain is from the facet joints, not all of it is. Should have a better idea of what the plan is going to be going forward after my follow up phone call today.
 

Badger

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It really sounds like you are in the wars cookie. When it is our neck or back there is no escaping it. The recent fall must have really shaken you up, it is awful when we get those flair ups afterwards. Your discomfort during the scans says a lot of the hospital experience for sufferers. I am sorry to hear that you did not get more relief from the injections. Hopefully there may be other options in future, although it is frustrating having to chase people up. Something cannabis based would be interesting. Atb
 

cookiebaker

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It really sounds like you are in the wars cookie. When it is our neck or back there is no escaping it. The recent fall must have really shaken you up, it is awful when we get those flair ups afterwards. Your discomfort during the scans says a lot of the hospital experience for sufferers. I am sorry to hear that you did not get more relief from the injections. Hopefully there may be other options in future, although it is frustrating having to chase people up. Something cannabis based would be interesting. Atb
my state only allows cannabis products with less than 0.3% thc... and I have tried several different products (both oral and topical) with not much improvement in symptoms.. makes it hardly worth spending the money on it.

"in the wars" is a novel, but appropriate analogy for me these days, LOL. Seems I cant win for losing some days.

My neck had been giving problems for a while, but yeah, the recent fall just exacerbated the issue.. the neck injections were specifically targeting the facet joints, nothing else.. and from the MRI report, i have pretty bad arthritis in more than just the facets, which would account for the injections not helping that much.

Got my follow up phone call a while ago, 2nd round of test injections has been cancelled due to lack of response this time.. I have an appointment with my physical med doc on the 14th to discuss other options - ie: where do we go from here?
Still considering a 2nd opinion option at this point.. but that decision I think will wait until after the 14th.
 

hope23

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cervical medial branch blocks - was a test run to see if nerve related pain in the neck, arms, hands, etc, is coming more from the facet joints or elsewhere..
if most of the pain was from the facet joints (due to arthritis or other degenerative issues), i would have had much better results, and we would normally move forward with a 2nd round of test injections, to verify that yes, this is the case... then go on to radio frequency ablation, where they burn the small nerves that feed the facet joints.

That is what i had done in the lumbar region and did get a lot of nerve pain reduction there.. Have actually had the lumbar region done twice now... 1st ablation lasted about 8 months (average duration is 6-10 mo before the nerves regenerate) 2nd round was just a couple months ago...will have to see how long it lasts this time.

The problem with my neck is the arthritis is apparently more severe than it is in the lumbar region, so while some of the pain is from the facet joints, not all of it is. Should have a better idea of what the plan is going to be going forward after my follow up phone call today.
Wow, that sounds like an ordeal and you havent got the hoped for(and much needed) relief that was anticipated. I am always curious about treatment options and new things becoming available, is this treatment for your FM symptoms or for another issue(i feel like i remember something mentioned about either arthritis or an injury🤔).

Im low scale hyper mobile and can sublux both my shoulder joints and both of my hips/hip joint(both the main ball joint on the side as well as the hip flexors, i have had this from birth). Since my FM symptoms started i have been getting recurrent bursitis in both areas, its unclear if the this is just a product of getting older, a result of inflammation in my body going to an area of weakness i couldnt say, but I've only had bursitis issues since my FM symptoms started and it has become more of a problem. This is treated with cortisone injections into the area, this is of course not a long term solution as the more times you get the cortisone injections the less effective they become(or so ive been told, i have not researched this myself).
Hence the curiosity, much love and hope you get some relief soon ❤️
 

longtimer

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I find every time I see my doctor or have a test or xray I end up in worse pain for a few days from whatever I have to physically do - bend over, twist, lie flat, etc. Treatments like injections also always make me sick with pain for a few days afterwards - but you gotta get through it. There's no way around it.
 

hope23

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I find every time I see my doctor or have a test or xray I end up in worse pain for a few days from whatever I have to physically do - bend over, twist, lie flat, etc. Treatments like injections also always make me sick with pain for a few days afterwards - but you gotta get through it. There's no way around it.
MRIs do me in, lying on that table in the one spot, my last one was 1 hour 45mins was excruciating took 10 minutes and two nurses to just get me off the table and my mum(i was 26 at the last one, now 28) actually had to dress me after and put in a wheel chair to get out of the hospital. Was horrendous, and one of my first signs my pain levels are creeping up beyond what i can breath through and deal with is i become fidgety in that i will tap my toes or flex and release my ankle, all the while theyre telling you to lay still 🤦‍♀️ makes me want to say lets swap bodies and see how well you go at lying still in that state
 

cookiebaker

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DX FIBRO
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is this treatment for your FM symptoms or for another issue
treatment for another issue - nerve pain - pins & needles, stabbing pains, etc..

for me, my fibro is more related to muscles, tendons and ligaments - ultra sore and sensitive to touch... the nerve pain is from arthritis osteophytes (basically bone spurs) pressing on the nerve roots as they exit the spinal column. that's what the injections were about.
And yeah.. odd position to lay in for the injections.. they had me face down, with my forehead resting on a rolled up thin blanket.. a pillow under my chest, but folded in half, and making sure the breasts were pushed downward.. and arms down by my sides.. and they actually tied my arms in that position so I couldn't move them! 😲 they use a fluoroscope to make sure they are in the right area with the needles, dont want to accidentally hit something they shouldn't.. and keeping very still is quite important - can be hard to do when it is painful.

@hope23 - You sound like you could have Ehlers-Danlos syndrome - the hyper-extension & popping joints out of place are leading symptoms of that (the counselor I was seeing has it so i learned a little about it.) might be worth checking into..
and yeah, I have been told the same about the Cortisone shots.. have had them in both hips (greater trachonter bursitis) and in the right SI joint...
have also had them in my wrists for Carpal tunnel syndrome. All at different times, but yeah.. 6 in total so far.. 4 in the last year or so.
I find every time I see my doctor or have a test or xray I end up in worse pain for a few days from whatever I have to physically do
yeah, i get the same way anymore... today was a pretty wasted day after yesterdays procedure.. really wanted to get out and get the driveway dragged (it rained yesterday, so today would have been perfect for doing that - simple job, just driving the rider around) but alas, I got nothing done at all... too wiped out to even try. was hard enough to just get myself fed today, and take care of letting the dog out and giving her some meds (she apparently has some kind of allergic reaction going on - vet saw her yesterday afternoon)

the back of my neck is rather sore & kind of bruised feeling this evening.. Partner says the injection sites look good tho, no signs of infection or anything, so that is good.

Tomorrow is another day.. hopefully a better one.
 

hope23

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@hope23 - You sound like you could have Ehlers-Danlos syndrome - the hyper-extension & popping joints out of place are leading symptoms of that (the counselor I was seeing has it so i learned a little about it.) might be worth checking into..
and yeah, I have been told the same about the Cortisone shots
This was one of the first avenues they looked at, but definitely not what ive got, have also been checked for ankylosing spondilitis (years ago and in the last couple of months, ive had the genetic testing done) as my biggest and most consistent problem area are my SI joints which is usually where AS starts. When i went through the pain clinic(really just a 6 week course that told me stuff id already found out through my own research) one of the other attendees has Ehlers Danlos syndrome which is actual dislocation of the joints due to the attach/breakdown of the connective tissue throughout the body most commonly dislocation of joints(including ribs which was not one id come across). Mine is just your basic 'double jointed' and its not actual dislocation its just subluxing the joint.

You really do sound like youve had a rough run of it and the whole procedure sounds horrendous and the fact you were tied is horrifying, if you needed to be that immobile surely a GA wouldve been better and less traumatic as well, especially if they didnt give the anaesthetic long enough to work.
 
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