[fearfulfrog]

Originally Posted by wickedwings

Dang. I think I'm undiagnosed with possibly CFS and FMS....... I don't know. I've a few days when even my hair hurt. It was weird. So far, I've experienced a bruised-like pain all over my body. Feels like the pain is in my muscles and bones. Even my skin would hurt. There were points where the pain seemed to concentrate on. The pain in my lower back and hips would wake me up in the night. Really, the pain has mostly been a dull one, but it's all over my body. Having so many physical complaints drives me nuts. Exercising would make it worse, big-time.

My docs are saying that it's arthritis. Arthritis don't get worse from exercising. Yeah, I would be in pain for a week. My doc says that fibromyalgia is always there and they don't come and go. Is this true?

For me, it can go but it's still there, in dormancy. Does that make sense? I'm feeling like I'm a hypochondriac with all these physical complaints. I have a very long history chronic major depression, which is being successfully managed.

What you describe sounds like me. Diagnosed in '96 with FM, still trying to come up with a plan to manage. As far as comes and goes- I have days I can barely get out of bed, others when I can at least take care of my home (I'm still tracking to see if it is related to my cycle- some are looking into this).

[coko27]

Originally Posted by Rainbowzz

I thought we could have a thread like neurotalk does to check in and tell how we are doing day to day or week to week ect.

So how is everyone doing?

I'm in a pain flare unfortunately, not too bad yet but its pretty ouchy, i might go to our little hospital tonight if it gets any worse.

I also suffer from fibo and I wanna know does yall have fatigue and back pain and have anxiety from it?

[roxyanne1]

[quote=coko27;1236795]I also suffer from fibo and I wanna know does yall have fatigue and back pain and have anxiety from it?[/qu
yes definiatly chronic backpain and anxiety...its like the chicken and the egg...which came first, all i know its a vicious cycle with depression in with the pain to make things worse.
All the best to you, hope you have a good Dr and dont give up if you havent.
Please PM me if you need a bit of support.
Roxynne1

[fearfulfrog]

Originally Posted by coko27

I also suffer from fibo and I wanna know does yall have fatigue and back pain and have anxiety from it?

I was diagnosed a year after a car accident that permanently damaged my back, so was the fibro there before and made it more likely to injure my back? or did the back injury cause the fibro to kick into overdrive? In one study that I participated in, the researcher found that people with fibro reported anxiety and depression 3X more often than general population- but it is the fibro mechanism in the body causing it or the fact of dealing with chronic pain? Maybe when doctors are able to ID what causes the fibro, then they will have a better idea about how it affects all parts of the body.

[Jewels]

I think it's both really...the fibro comes with the pain, and then the pain gets worse due to an accident or a worsening of the symptoms...and so the cycle starts all over again...the Lyrica helps tremendously...have been on it for quite some time now, and while the pain is always there, it is much less with the Lyrica than without it...at least it doesn't hurt to get hugged as much as it used to...and from what researchers have found is that CFS (Chronic Fatigue Syndrome) is a LOT like Fibro and there are some suggesting that they may be one in the same thing...which I guess it could be because we have both and have noticed that our pain is in great measure relieved somewhat by the Lyrica...while other aspects, like the fatigue, seem to fit into everything these days...especially with the meds that deal with the fibro and CFS and arthritis and Degenerative Disc Disease and spinal stenosis...gosh...sometimes I'm just thankful that the pain isn't worse...pm me if you need a little pick-me-up in the depression department...
Yahna Jewels

[fearfulfrog]

Originally Posted by Jewels

I think it's both really...the fibro comes with the .pm me if you need a little pick-me-up in the depression department...
Yahna Jewels

You have pm turned off.

[Jewels]

lemme fix that for u...

[sabby]

Since just before Christmas I've been pretty busy IRL, both mentally and physically. I'm no spring chicken and I find my physical strength has been dwindling a lot every year.

Being busy brings with it a lot of stress and sometimes anxiety as well. Both things can aggravate the Fibro to no end.

I have not been able to rest and relax enough to get the pain controlled at all. For the first time since a year ago when I received a prescription for flexeril, I took one last night hoping it would help me sleep. I tend to get really loopy on flexeril and since I care for a disabled individual 24/7, I can't take the chance of an emergency happening and me not being able to function, so I usually just suffer through it.

Well, it didn't work. I didn't get loopy and I tossed and turned all night. Not only that, but I got hit hard with a nasty head and chest cold too. It just never fails, I need rest and there is no rest to be had.

No problem, I'll keep on ticking....someday I might go off! LOL Kaboooooooooooom!

Not looking for any sympathy...just needing to sound off a bit

[Pomegranate]

(((((((Sabby)))))))))) I experience the same thing. But I'm lucky that I have don't have to be on call 24/7. I don't think I could do that.

[sabby]

(((((((((((( Pom )))))))))))))))

How you been dahlink??? I'm glad you don't have to care for someone 24/7 either. It can be quite a handful for even the most healthiest of people at times.

Since I wrote the last post, I have had some improvement for a few days, then the PN started up again in my arms and hands....that tingling is driving me nuts. There is a weather front coming through tonight and tomorrow with more snow on the way....so that means the legs and knees are screaming at me today. Well, I decided to scream back at them Don't know if it will help the knees and legs but I feel better for getting it out

I feel like such a whiner sometimes. Even though I really don't think that I am one....who knows...maybe I am LOL.

I hope you are doing well .... I know I can't wait for spring time...how bout you?


sabby

[Pomegranate]

Hello back to you Dahhhhlink! You are NOT a whiner. Not ever. Get that out of your head.

I hate those weather changes, always cause my pain level to rise. And yes, I HATE WINTER!!!!! Sorry. I always get emotional talking about that. I generally feel much better, relatively speaking, in the summer than the winter. My hubby and I would like to move some place warmer in few years. After he finishes the job change he's going through.

I'll have to try screaming at my body pain when it screams at me. I'll try anything that helps! You take care also. Hard to believe you are getting so much snow where you are! Isn't that unusual?

[sabby]

Ahhh...to live in a warmer climate...I never in my life ever thought I would even give that more than a 1 second thought, but these days it's sounding better all the time. At least where the fibro is concerned. I'm kind of stuck in a quandry over weather...if I get too warm, my nerve endings go haywire and I can't function....lovely PN. And, if I stay in the cooler states then the fibro kicks in with the extreme weather changes we have. Danged if I do, danged if I don't.

As far as the snow goes...this is typical New England weather. Two winters ago we had the 2nd snowiest winter ever recorded in my area. We had over 100 inches of snow. It was unbelievable. I don't know how I got through all the shoveling and cleaning off the cars. This year, I'm lucky...the man I care for has a sister that lives next door with a 13yr old son who is a doll and comes over to shovel for me. He's worth his weight in gold as far as I'm concerned

Take care my friend! (((((((((( Pom ))))))))))


sabby

[fearfulfrog]

I have been being evaluated by pain specialist. MRI of lower back showed no further damage than after the car accident, meaning: there is nothing we can do, its your fibro causeing the pain. MRI of the neck was a whole different story- I had ONE bulging disc putting pressure on my nerves after MVA, that tingling, pain and loss of feeling went away after MANY rounds of PT. (still waiting on results of foot MRI- metal should be flying at me by now!) Neck shows that there are now TWO discs that are of concern, and while they don't impinge the nerves, instead they are pressing on my spinal column- possible reason for headache that won't end and upper back pain. PT will not help. No area of acute inflammation was seen, therefore cortizone shots won't help either(they don't work for me anyway). So now I have to go see a neurosurgeon to determine (not IF) when I will have to have surgery. I do live in the northeast so I have Dartmouth medical school about an hour north and Boston an hour south, so I have access to the best there is. I haven't digested all this yet. I am scared to search for the outcomes to the surgery just yet. Once the neck is fixed I still have to deal with the fact that my pain in walking(assuming the surgery doesn't paralize me), is not something "fixable", but rather "progressive" and will need to be "managed". I am already on disability and now they tell me I will only lose more function- I won't regain anything? Not doing so good for the depression here.

PS: why isn't there spell check here? Typing through tears really messes up my spelling!

[sabby]

((((((((((((((( fearfulfrog ))))))))))))))))

I can only imagine the emotions and fear you are going through right now. I'm so sorry

I can tell you this, my youngest daughter had back surgery at Dartmouth 2 years ago and is still walking She had a great surgeon and while she is still not where she wants to be pain wise (the surgery was a gamble, fusion of L4 & L5), the surgery was successful with no complications.

Take some deep breaths hon....try to relax a bit and calm. Write out your concerns, it might help to get them out, feelings and all. You are welcome to pm me if you like and I'll gladly listen.

Take care!

sabby

[Jewels]

(((((((((((((((((((ff))))))))))))))))))))))))

we r sorry you are hurting so much...we will b prayin for u and sending good thoughts your way...
gentle hugs
abbi

[fearfulfrog]

Thought I would leave an update. My PCP referred me to a MD right here in town who has done many surgeries like I need. After the consult and seeing my MRI on the TV screen I knew there was no use in waiting- I am scheduled for April 8th ( I have a court conference on the 1st and wanted to wait until after that). I have watched the surgery on youtube(info- not a virus, who knew!)( I used to be an Oral Surgery assistant so this stuff doesn't bug me). The doctor said that 75% of patients see an 80% improvment in pain within the first two weeks after surgery! As long as I don't fall into the 25% that don't see improvement, I am actually looking forward to the surgery! The weather here has been great- warm, sunny, light breeze- how could I not take a walk around the block( I didn't even go to the park )? For two days now I haven't been able to stay in any sitting position more than a few minutes- I had to leave church because I couldn't sit upright! Anything will be an improvement!

I hate taking the pain meds, but right now they are looking pretty good- even typing is tough- I can't feel the keys so I have to watch my hands- I used to type 80+ WPM in college. I want to do my dishes, but even that will test my back to bend for the sink. My house is a mess! I am OCD and take pride in my home- right now I don't even want a friend to come in to help me clean (I have great friends that will do stuff I can't do).

Enough complaining, going to give in, take the meds and give myself the OK to be done with housework for the day- my husband is awesome about not caring that I can't do stuff!

[sabby]

((((((((((((( Fearful )))))))))))))))

I hope you got through surgery with flying colors and are home quickly and recovering well. Please check in when you get a chance. Wishing you a quick recovery!


sabby

[fearfulfrog]

One week and one day since surgery; yesterday only took two half- doses of pain med/ muscle relaxer. Spent one extra day in hospital because they couldn't get a pain med to work that I could swallow. Came home on two meds, taken exactly as prescribed- they wore off about an hour before the next dose was due! The doctor found more trouble than he could even see on the scan- I had multiple bone spurs that were actually in contact with my spinal cord- very good that I didn't put it off! He also said there was more damage to the areas above and below where he worked than he thought ( I knew that possible 10-15 years down the line I may need those done). I will find out next week how often he will see me to keep an eye on those areas- I have made a new doctor friend for life it seems. I am now at the pain level that I was before the surgery. So now as I move forward it will be a question of still healing from the surgery? or is this my fibromyalgia? As my activity level has been restricted to "rest" I can't say weather I have seen any improvement in my symptoms at this point- he just moved and stretched everything in the area that was the problem- I may have even gained back an inch I lost!- so all the muscles that hurt because of the pressure now hurt because of the new position they have to accommodate. I will find out when I can start therapy to re- build my strength in these areas when he evaluates me next week. I am looking at a long slow process of PT- I didn't go from in good shape to so bad in one week, so I have to rebuild things slowly so I don't injure what was repaired. My son saw me- neck brace and all and was ok with it (he is 7). He even thought my incision was cool ( ugly, ropey, red, blue and puckered was my description).

As much as I HATE to "rest" I know it is the only way to let my body heal- at least something has been fixed to heal rather than before when a doctor would say rest and instead my muscles would atropy! Due to REALLY bad screw-ups on our internet/tv/phone service my husband managed to get them to give us a premium movie channel for free for three months- so at least being in bed isn't so bad when I can order all the movies I want "on-demand". The nurses at the hospital have to be commended- they were there for me, helped me, and made sure that I was fully ready for what was to come. The rehabilitation staff made sure that I could do all that I would need to once I got home and gave me devices to make it happen ( A plastic thing to help put my socks on- I needed one of those for years!) While I can't braid my hair (no putting both arms above my head), at least while in the hospital the nurses did that for me. Although I came home in more pain than I had expected I did feel ready to be home. I will update on my progress- it may be months before I can determine what is fibro pain and what is expected rehab pain.

[sabby]

((((((((((((((( fearfulfrog )))))))))))))))))))))

So glad to hear from you and get the update on your surgery and recovery. I've been thinking about you and wondering how things were going.

I think being able to get relief from your pain meds until an hour before your next dose is pretty darned good. Can you take some tylenol in between your doses of pain meds to help stretch the time of pain relief? A friend of mine had knee replacement and that's what the doc prescribed to help between doses, and it did help a bit. You know the trick to being as comfy as possible is to take those meds religiously, even in the middle of the night so the pain doesn't get way ahead of you.

I think it's a good sign that you are not in any worse pain than when you went in for surgery. It's just like when going to a chiropractor and your alignment is off, when they put you back into alignment the muscles do scream for a bit don't they?

I'm sorry the doc found more damage than he thought he would find. So yes, you did the right thing by not putting the surgery off.

Resting is so hard to do when one is used to be up and moving around. We mom's find it the hardest don't you think? So, as hard as it is, take good care of yourself!!


sabby

[Perna]

Glad you're doing as well as you are and are at pre-surgery levels for the pain meds and hopeful of getting better than that. It is good you got the surgery done right away, and both sad and good the doctor found other problems. I hate how slow one mends after surgery/therapy, especially the older one gets!

[sabby]

I'm wondering if anyone else with fibro has experienced the following......

I work in a somewhat high stress situation almost 24/7. I'm a home provider for an individual with mental/emotional/physical disabilities. This individual can never be alone, he has supports 24/7 by me, his day provider and respite. I've also had some pretty stressful situations with my family as well for over the past few years.

That being said, may times my fibro acts up when really stressed out. I try hard to keep the stress to a minimum with a lot of self talk, breathing, meds and lots of laughter.

Right now I'm on a little mini holiday until late Wednesday afternoon. No family, no individual to care for, only me...just me Two days before I was to leave on my holiday the fibro kicked into very very high gear. I was exhausted, in much pain and I thought maybe the changing weather was playing into the pain and inability to move certain joints without almost crying.

So, here I am in my motel room and I want to cry. I can't believe I'm still in so much pain. I'm fairly relaxed, have no worries that I'm truly thinking about, but the pain seems to be worse than it was 2 days ago. I would have thought that by relaxing more, I would feel somewhat better and have some energy. Nope, no such luck.

Is this because I've been working through all this and not paying attention to myself and my body like I should have done, so now it's really kicking in or I'm just realizing more of the pain because I can actually think of myself now? And, does all this make any sense????

[Perna]

Any hormonal things going on? Meds that have changed; maybe the intense-to-nothing was a stressor in and of itself? And how has your sleep been? That alone can mess things up, even other than Fibro.

It is unfortunate that it's during your time off! But, like you say, maybe it's because you've given yourself permission to relax and pay attention to yourself, kind of like how after an accident/emergency is safely over, is when we come apart.

[sabby]

Nope, no hormonal changes, no changes in meds either.

My sleep goes from sleeping pretty soundly for most of the night to tossing and turning and broken sleep. I can go for a number of nights sleeping well, then I get the broken sleep for awhile. No real pattern to it that I can discern.

It is unfortunate that it's during your time off! But, like you say, maybe it's because you've given yourself permission to relax and pay attention to yourself, kind of like how after an accident/emergency is safely over, is when we come apart.

Tell me about it! Just my luck during my time off LOL. I so understand about the accident/emergency thing....been there done that, so you may b onto something there!

Thanks Perna

sabby

[January]

I think Perna is on to something. You are always on alert in your job situation. You essentially have no down time at all and you finally got to relax and the "flight or fight" reaction has eased.

Last night after I had an extremely stressful situation and calmed down, my fibro was so flared that I could barely walk. Maybe it's the same with you.

I hope you feel better so you can enjoy your mini vacation. You certainly deserve a good time instead of misery.

[sabby]

(((((((((((((((( January ))))))))))))))))))

I'm sorry you had such a difficult flair with the fibro. I am glad you were able to calm though.....lord knows we need more calm in our lives!

I'm feeling a little better today. Still having issues with mostly my left shoulder and neck area. I don't need to take anything extra for pain, it's just uncomfy.

Thanks so much for you care and love