NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Fibromyalgia and Chronic Fatigue (https://www.neurotalk.org/fibromyalgia-and-chronic-fatigue/)
-   -   Fibro without the tender points? (https://www.neurotalk.org/fibromyalgia-and-chronic-fatigue/94407-fibro-tender.html)

sunnydee 07-23-2009 07:53 PM

I'm starting to think I could have sensory neuropathy and fibromyalgia. In addition to being completely worn down for two weeks out of the month, I have pain in my feet, legs, hands,and arms - burning feelings, feeling my feet are freezing cold.

My problems seem to be more in my joints - knees, elbows, feet. For for the two week period every month, I get completely fatigued, have sleep disturbances, hip pain, and trouble concentrating.

How do people get fibromyalgia? I swear that mine all started from a repetitive strain injury. I started a new job, and pounded out a highly detailed instruction manual on a laptop. Slowly it started in my hands to my elbows. Then six months later it shows up in my feet and works it way up to my knees. Is it possible to have a gradual onset, or is it all at once?

Mere 07-23-2009 08:56 PM

Tender points show up later, or never.
 
Quote:

Originally Posted by sunnydee (Post 540000)
Is it possible to have Fibromyalgia without the tender points?
Is the pain always like a dull heavy ache?

My pain feels more arthritic. If you lean on your elbows on a table, will your elbows burn if you have FMS?


I have had FMS for at least 17 years. In the beginning, I did not have the tender points; they appeared after seven or so years. Now I always have all (17?) points positive when I see my Rheumy. FMS is a weird disease and tender points are not always present. Everyone is different.

Mere 07-23-2009 08:58 PM

My FMS preceded Spondylarthropathy and connective tissue disease. FMS pairs with autoimmune conditions fairly often.

Hang in there,

Mere

BlueMajo 07-24-2009 11:53 AM

Quote:

Originally Posted by sunnydee (Post 541555)
How do people get fibromyalgia? I swear that mine all started from a repetitive strain injury. I started a new job, and pounded out a highly detailed instruction manual on a laptop. Slowly it started in my hands to my elbows. Then six months later it shows up in my feet and works it way up to my knees. Is it possible to have a gradual onset, or is it all at once?

I think mine was "developed" after I had a very schocking impression... Although, now that I think carefully, I had some symptoms before... probably thanks to stress :mad:

I bet I have an autoimmune disease too... :rolleyes:

Dmom3005 07-24-2009 10:53 PM

I also believe that its something that developes more after you have had issues of damage to your bones. I seem to have had more problems thanks to PCS and TBS, So I am learning all I can about all 4 syndromes.

I will return tomorrow, to put a link in about a new book I found on fibromyalgia and CFS this last week while I was on vacation. I have to find it in the mess of stuff I have.

But I have to say its brought lots of light to my problems.

One big help, even though I don't understand it yet, but I found a symptom
in the book that I've found no were else. Thats the sudden loss of breath
that I've had problems with for about 2 years.

My allergy/asthma doctor has been sending me to all kinds of doctor's for a answer. I think I found it in a book of all places.

Donna

Megan 07-25-2009 08:25 AM

Various pain dimensions!
 
As I analyse it, I think I have three dimensions of pain - apart from tender points. (My tender points were never checked until I had already started Lyrica so were a moot point, although I know I had terribly sore spots all over).......however...

...back to the three levels of pain they are;

1). Burning skin - nearly all over my body but worse on legs. This can be likened to sunburn all over or standing in a sand storm with the sand beating on ones skin 24/7. I call this my Neuropathic pain. I also have electrical type currents on occasions in feet but these are not painful as such.

2). Excessive stiffness like one has climbed a mountain or done excessive exercise the day before. My thigh muscles and arms muscles and sometimes the trunk muscles are so stiff that it is hard to walk without being very slow or limping. Also fingers and hands are very stiff when I wake each morning, and most evenings I am very stiff after sitting for even short periods of time.

3). The third type of pain in a deep bone aching pain of the four limbs and is hard to know whether it is in the muscles or the bones. This has been worse for me while in bed at night but now the Lyrica has helped me to sleep better and with analgesia three times per day (non-negotiable) I am less aware of this pain now thankfully. Before the Lyrica I would 'dream' pain and it would be just under the surface of my sleep and I would wake frequently - very disturbing!

I could probably add a fourth level of pain which I'd label odds and end pains -such as you say, like leaning on an elbow or having a bent leg or arm and the resulting pain when trying to get it straightened. Hip pain which can be searing but is not there all the time. Fleeting pain throughout joints and constant knee aches - that type of thing etc.

So it's quite multi-dimensional the pain aspects.

Interesting though for many years (way before Fibromyalgia diagnosis) I always used to get very sore and tender skin to touch all over my body around the time of menstrual periods. The doctor told me at the time when I asked about it, that it was called "hyperparasthaesia" but he didn't elaborate further. I sometimes wonder if some of these 'symptoms' herald the onset of other things!

sunnydee 07-25-2009 08:55 PM

Types of Fibro Pain
 
Thanks for sharing your experience, and I'm sorry for what you are going through. Out of the various pain experiences you describe, the burning pain and the deep pain in the limbs sound like I feel sometimes. The deep pain in the limbs is hard to tell if it is muscle or bone, but it feels incredibly deep. My periods are unbearable.

Do you find that taking Lyrica you can live somewhat of a normal life? I'm worried about my work situation. I'm 47 out of work and would make a terrible employee at this point because of my fatigue, pain, and inability to concentrate.

I was also wondering if the hip pain has ever caused anyone the inability to lift a leg (as in climbing stairs or marching). My GP sent me for a MRI of the lower spine because of this condition, but it was normal. It will come out of nowhere. I can't lift my leg to get out of a car without me pulling it with my arms. It's very painful. Then as mysteriously as it came, it disappears slowly. It's the one symptom that scares me the most, and I can't find anything related to it searching on the internet.

Mere 07-26-2009 12:14 AM

Pain and Work
 
Megan, I also get deep pain in the center part of my upper body. A deep dull pain that goes straight through to my spine and extends into my ribs and carteledge. Makes me want to cry sometimes.

Sunnydee, we have a few things in common: age, employment, or lack thereof and, oh yeah the FMS thing. Certainly sounds like you are suffering from FMS.

I worked or half-worked and attended night college with FMS and all the meds in tow for over 20 years. My boss was impossible at times and there were those days where my eyes would roll so far that I was afraid they would get stuck in my head...but I usually made it to the end of the end of the day only to drive home in DC area traffic (one of the worse) and then come home to cook dinner, make lunch for the next day and try to have some one on one with my dear husband. Usually, I was too tired at that point. I worked as a VP for a medical alloy manufacturer - a very stressfull job and then enter in the stressful boss. Also, there were too many times when I felt 'stupid' from the FMS and would have to meet an important client or do something really important to then after get stressed-out and fall into another flare. It can be a vicious cycle.

Many more times, I was out for days or weeks with a flare. Stress and hormones always made things worse. Weather fluctuations, allergens, colds and such, the beltway every day... the list goes on. I have been dealing with this for a long time so I now what my triggers are...

It is possible and doable to work with FMS and drugs but there will always be some issue of disbility. It may never go away. You may have to be okay about being sick alot and missing work. Hopefully, your boss will understand. Oh dear, I hope I am not being negative.:hug:

Mere

sunnydee 07-27-2009 06:50 PM

Fibro w/out tender points & sleeping problems
 
Thank you all who responded. I'm going to my GP in a couple of days and again asked to be checked for tender points since I didn't have any last time.

I worked on the computer today and it feels like I have loads of concrete bricks on top of my shoulders. I also have very weird sleeping patterns. I wake up constantly and remember my dreams. It makes for a interesting but unrestful sleep!

I've read that a theory that if the sleeping issues with FM are addressed, it helps the fatigue. It makes sense, but I wonder if dealing with that alone also helps with the pain. It seems like a treatment of addressing the sleep and pain is the best way to go?

As for working, I guess if I can find a job where the boss doesn't mind me being in a fog for a couple of hours in the morning and being too tired to even show up at least a few days a month, I'll be ok :)

Macophile 08-04-2009 04:45 AM

Quote:

Originally Posted by Megan (Post 542124)
As I analyse it, I think I have three dimensions of pain - apart from tender points. (My tender points were never checked until I had already started Lyrica so were a moot point, although I know I had terribly sore spots all over).......however...

...back to the three levels of pain they are;

1). Burning skin - nearly all over my body but worse on legs. This can be likened to sunburn all over or standing in a sand storm with the sand beating on ones skin 24/7. I call this my Neuropathic pain. I also have electrical type currents on occasions in feet but these are not painful as such.

2). Excessive stiffness like one has climbed a mountain or done excessive exercise the day before. My thigh muscles and arms muscles and sometimes the trunk muscles are so stiff that it is hard to walk without being very slow or limping. Also fingers and hands are very stiff when I wake each morning, and most evenings I am very stiff after sitting for even short periods of time.

3). The third type of pain in a deep bone aching pain of the four limbs and is hard to know whether it is in the muscles or the bones. This has been worse for me while in bed at night but now the Lyrica has helped me to sleep better and with analgesia three times per day (non-negotiable) I am less aware of this pain now thankfully. Before the Lyrica I would 'dream' pain and it would be just under the surface of my sleep and I would wake frequently - very disturbing!

I could probably add a fourth level of pain which I'd label odds and end pains -such as you say, like leaning on an elbow or having a bent leg or arm and the resulting pain when trying to get it straightened. Hip pain which can be searing but is not there all the time. Fleeting pain throughout joints and constant knee aches - that type of thing etc.

So it's quite multi-dimensional the pain aspects.

Interesting though for many years (way before Fibromyalgia diagnosis) I always used to get very sore and tender skin to touch all over my body around the time of menstrual periods. The doctor told me at the time when I asked about it, that it was called "hyperparasthaesia" but he didn't elaborate further. I sometimes wonder if some of these 'symptoms' herald the onset of other things!

My Rheumatologist Dx me with Fibro, but didn't explain anything about it really and just recently I have begun linking things with this, like the tired feeling and the "flu-like" ache in my body after doing things. And for the past 3-4 months My arms and torso, (sometimes my legs, but not as often), feel like they are burning. It is the weirdest feeling to feel like you are on fire. This explains so much of it is connected to the Fibro though! I just wish there was something that could be done for all of this.


All times are GMT -5. The time now is 12:35 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.