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please describe your fibro pain in detail

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Posted 2/24/2015 10:33 PM (GMT 0)
Ive read the 17 fibro pint pain areas are described as being painful to a light touch, meaning no pressure needed. This sounds like "surface pain" to me.

Surface pain and deep pain are not the same.

Is fibro pain not the deep achy type?

Do you get tendon pain (tendonosis) frequently?

My pain is deep muscle tightness, achyness and reoccurring tendon issues, which seems different from what I've read on fibro pain. Or is my pain like some of yours?

The only way I get reliefe is from applying GREAT pressure to the area, in the form of triggerpoint release and active release. A LOT of pressure, gets my muscle "plumbing" going again and I fell beter for not more than a day. I do this on arms, hips, glutes, shoulders, back with "therea cane".

I'm from the lyme forum seeing if my pain matches other "illnesses", trying to find answers or a way to lesson the pain. i think my Lyme is gone but I still hurt a lot. Been this way 25yrs.

I might try low oxalate diet for pain, might need it per my DNA genetics. Some fibro people claim this helps. Gluten free does nothing for me. I am tying to find the cause before using fibro pain meds. I'm quite knowledgeable on thyroid, and mine is treated optimally on dessicated thyroid, so its not that..

thank you
Posted 2/25/2015 2:47 AM (GMT 0)
Many of us have deep achy pain , and yes it is common to have tendonitis, although not all with fibro do..

I have read that there are differing types of fibromyalgia , so there are so many varying symptoms and in each of us it can change .

Winter has been tough on us this year..yay feb is about finally over

A topical pain reliever, soothanol x2 has been a great help with tendon pain. I had excrutiating achilles pain at times and the topicals helped so much. We also have to try and keep stretching both the muscles and tendons to loosen up.

Lj
Posted 2/25/2015 3:06 AM (GMT 0)
LJ said it perfectly. I get deep achy pain. I use Deep muscle Massage therapy, a couple of different topical relievers, trigger point release and tramadol. Sometimes I push into the pain with stretching. They all help at different times to varying degrees. It's seemed weird to me that even though I love the DMMT, sometimes a light touch can feel very painful. The winter this year is overwhelming all of them. It was colder in my city than at the north pole a couple of weeks ago.

Not every solution works for everyone either. LJ uses acupressure mats. I can only use mine occasionally, but love it when I do. My husband uses it twice a day if he can (he doesn't have Fibro, but possibly CRPS). Some of the folks here cannot stand Deep Muscle Massage and find that lighter massage is much more comfortable. Some can't stand it at all.

It's the frustrating part that there are no clear answers. The cool part for me is that on this forum there are so many people that use so many different methods. It's currently keeping me sane when I can't keep the pain at bay for even an hour or two.

I hope you find some things that work. If you are good with the heavier pressure, maybe the acupressure mat would work for you. I use the pillow a lot, but have problems with the mat.
Posted 2/25/2015 3:47 AM (GMT 0)
Hi jenni,

What bothers you with the mat? I get busy and forget to use it at times..but when i am flaring i get it back out..i do wear a thin shirt with it, even tho it recommends bare skin..

It relaxes me and i sleep better if i use it at night.think it takes getting used to...when i first saw it.. I thought ..oh this might be a bit much for me..

Lj
Posted 2/25/2015 4:17 AM (GMT 0)
I just read some soothanol x2 reviews on Amazon - it sounds awesome, I never heard of it before. This is on my list.

Goggled acupressure mats- some had sharp claw like things (enough to rip clothing) others were more smooth. Quite a bit of difference. Are these for different purposes? Is the effect lasting at all?

I just layed on a lacross ball on the sides of my hips and glutes. These areas tighten up 3-4 days after exercise. If I dont manually loosen them up, it gets unbearable and makes my low back and SI real sore. Its a very fine line between not enough exercise and too much.

thanks
Posted 2/25/2015 4:30 AM (GMT 0)
Hi Astro

I've had deep and surface pain... once I had a deep painful muscle flare up along side my neck and upper back shoulder blade... went to massage therapist emergency appt... did the deep tissue thing and my pain was still there though not like it was when it started earlier... later that night it came back... i use advil and a muscle relaxer to deal with it all... and JC Tonic as a herbal mix with a little magnesium to ease the pain.
Posted 2/25/2015 5:41 AM (GMT 0)
Astroman,

I have both surface and deep pain, though I would say more often it's deep. There's burning, numbness and tingling, smarting, throbbing, itching, shooting - you name it, we have it - and it likes to move around for no apparent reason.

I've been told that Fibro accentuates any pain that you have, and it sure feels that way. A hangnail can wake me up at night. A hat that's too tight doesn't just feel tight, it makes my head ache - very quickly. Things that most people would barely notice, like the wrong fabric next to my skin, is intolerable. It might feel icy cold, or terribly scratchy, and I can't just push it into the back of my consciousness like a "normal" person.

The way I understand it, the current thinking is that our brains process signals differently. Why this happens - whether it's functional or structural, whether we're born this way or something triggers a change, is still unknown. But at least now they're finally starting to research it.

The pressure point test is only one tool for diagnosing Fibro, and not all people with the condition have all the points, or even any of them. Did you notice our "Fibro 101" thread, first on the list? There's great information in there: symptoms, treatments, coping skills, and lots more.

I hope you find the answers you're looking for, and congratulations on being rid of Lyme disease!

Debbie
Posted 2/25/2015 5:56 AM (GMT 0)
The soothanol sounds pricey but , it really takes a small amount and works for a long time...the company who makes it has sales, buy three, get three free...if you try it and respond well , its a great way to purchase

If you don't mind smelling like an italian kitchen..lol... Oregano oil ..is a super strong topical pain killer, as well as a strong anti- viral if you put three drops in water

Pain erase is good, but needs applied more often

I was very intimidated by the look of the acupressure mat..but once i started using it, was hooked. I had also liked acupuncture in the past..

It takes a lot of trial and error to find what helps you personally, but you can get relief , just keep working on it til you find the right combination for you.

I cannot tolerate a lot of strong meds, so i use a combination of things , like heat, gentle exercise, topicals etc..

When i start into a flare, i am comforted that i have a toolbox for that.

Lj
Posted 2/25/2015 2:25 PM (GMT 0)
Does soothanol have a noticeable scent? I prefer to be stealth. And does it soak in for deep pain? (Since I have deep pain).

I'm still researching what my leftover pain could be. Chronic Lyme can wreck the body if untreated for years (decades in my case). It hampers healing from injury, so I've had lots of scar tissues, muscle "roping" knots, , adhesion's. So, its hard to say exactly what is causing this in me.

Whatever the cause, I figured some tricks and suggestions from this group could help my pain.

Pain erase- I'll look into this too.

Any more ideas-thanks again
Posted 2/25/2015 5:14 PM (GMT 0)
Both the pain erase and the soothanol have smells to them ..but to me the smells dissipate quickly..i am ultra sensitive to most smells so when you first put in on you can smell it , but seems like within 10 minutes its gone.they are also not smells or products i am allergic to..

I need the help with pain, when australian dream came out with no odor..i was excited to try it..but for me it did not help at all...

These products can burn a bit for 10 min after application and you cannot use heat for 30 min after applying..

Whatever you decide to try , sure hope they help you..
Posted 2/25/2015 6:28 PM (GMT 0)
Astroman,

I use Arnica cream with my pain. I also have Voltaren Gel but I try to use that sparingly as I occasionally have issues with stomach after that. The cream is just called Arnicare cream. It has no smell and is good with muscle pain, stiffness, swelling and bruising from injuries. My massage therapist recommended it. She gave me some for free when I brought in a travel bottle, but I only use that one at night because it has a menthol scent to it. The plain arnicare cream works great and has no smell. I rub it into any place that hurts and it is usually good for about 4 hours. It doesn't take much and the 2.5 oz tube was about $8.00. It's lasted me about 2.5 months and is just over 1/2 empty. I don't use every day, but have used it most days several times a day over the last few weeks with the cold.

I hope you find something that works for you. Good Luck!
Posted 2/25/2015 8:26 PM (GMT 0)
Hi Astroman:

I do think that many of us have conditions that have been diagnosed and, as stated, Fibromyalgia complicates them by adding more intense pain.

I have Osteoarthritis in a number of joints. My neck OA and the headaches that come along with it are the worst, at least I thought it was. I have had for a couple weeks pain in my left arm. It is both surface pain and deep pain. When I have to cough it is causing pain in my underarm. I have been using a ton of ice on my arm and also on my sprained ankle. I just picked up some meds yesterday and I was provided some 50 mg Tramadol. I do use Nortriptyline. I take 40 mg after dinner and 50 mg at bedtime. It was helping me to get a deeper sleep. Nortriptyline is not nearly helping the arm pain. It actually was prescribed for Neuralgia. It did stop nerve spasms that began when I came off of Lyrica. I understand that Tramadol and Nortriptyline may not be a good mix but I have to stop this pain. The arm pain is worse than the daily headaches. I added 25 mg of Tramadol last night at bedtime. I have had little sleep in two weeks. I can't make the arm pain stop. It came down some last night. Unfortunately, it returns when the Tramadol wears off.

I am to have an ultrasound on my shoulder/AC joint in April. I will get an x-ray of my neck in March.

I get pain come and go in a lot of places. Some spots are where I had an injury many years ago. Other places, not sure why. I have places that have pain to touch but I don't feel pain if I leave the places alone. There is a medical term for this but I can't remember the name. I get some places in my head periodically where I find pain when I touch it - this I presume is a trigger point.

My headaches begin at the base of my skull. It moves up the middle of the back of my head and I get pain on the top on both sides and sometimes the pain moves into my forehead. They are cervicogenic headaches. My head just tenses up all the time. I have jaw pain. I have sinus issues. I have had the sinuses looked at by a ENT and had a CT scan. All seemed normal. I do, however, wash out bloody mucous with Neil Med. All my Doctors are aware. The ENT could see no cancers, a good thing. Nothing further has been examined. I get nerve blocks for the headaches and see a Registered Massage Therapist just before the nerves blocks. The massage did not help the arm pain. I use many pain creams and ice gels. I have soaked in the tub with Epsom salt, sea salt, lavender and chamomile products. I keep moving. Walk with pain.

I too am sensitive to many things. Hangnails, dentist cleaning, labels on clothing to name a few.

I have read some of the posts on Lyme Disease and Lyme complex. Glad to read yours is under control. One of the contributors to my conditions was colitis with rectal bleeding caused by C. Diff. One of the meds used to rid of the bacteria may have caused nerve damage.

Sorry for the repetition, you end up saying things often to try to explain.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...
Posted 2/27/2015 3:18 AM (GMT 0)
Hi everyone,

I'm still new to the fibro world, was diagnosed in Oct. Pain for me is deep. My doctor did the Point test and I hardly had any. I tried to describe the pain to him and being an untouchably deep pain. I figured it is hard for someone to understand what I meant by untouchable unless they experience it. It seemed no matter what I did, I could not reach that pain and make it go away-nor could any medicine or heat. Until he put me on Lyrica-what a Godsend....at first. Today I went back to have the dose adjusted because it seemed to have lost effect. So now I am on the max dosage of 600mg/day. I had also tried Tramadol for the flare days and any other time I was feeling pain---it didn't do anything for me. So my doctor is trying to put me on Butrans Patch 10mg. I have to use a mail order pharmacy so he faxed in the info- unfortunately I may not get it for another week or 2. I've read it helps people a lot. I told him that I preferred to take Norco b/c I know it has helped in the past-but I also told him I was aware of it being addictive to some which is why we are trying the patch instead. Some days are harder than others. There is a cold front coming in tonight-I didn't have to see a weather report for that. My body told me. Flare days for me are like a bad case of the flu-w/o the fever. Aches so bad you don't want to move. Those are the days I want to cry. I take Flexiril at night to help loosen the muscles-waking up was hard, I felt like I was 90 and I'm only 33. Stiff and in pain. The flexiril really helped that. I'm also trying Magnesium and 2 pills morning and night of OTC Naproxen Sodium. Heat helps too-I live w/ my heating pad on my couch and a heating blanket on my bed-I will never get rid of them! Hope that helps anyone and if anyone has any suggestions for me I'd love to hear them!
Posted 2/27/2015 9:53 PM (GMT 0)
We have both deep surface pain and what seems to be surface pain. The tender points are things I don't even notice until someone touches them. And, it's not just the tender points. At times I can't be touched anywhere, or even have someone too close to me. Neurontin has helped with this greatly. Then there is the deep achy all over body pain (that most of us describe as feeling like a bad case of the flu). Sometimes it also feels like I worked out way too hard the day before, or like a got ran over by a train and left for dead. It can be difficult to even move on those days.

The problem with Fibro is that the pain varies in every way. Not just from person to person, but within that person. I saw the title of this thread and I laughed. We spend so much time trying to describe our pain "in detail" and yet it's so impossible to do.
Posted 2/28/2015 10:50 PM (GMT 0)
Ditto on the days that you got hit by a train..february was brutal ..

Almost march!!!
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