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just recently diagnosed with Fibro

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Posted 10/8/2009 4:51 PM (GMT 0)
im new and im reading.. i was just recently diagnosed with Fibro after having i cant count the amount of tubes of blood taken and every test known to man taken.. ive seen 3 drs.. and finally one said..well you have fibro.. went to my family dr.. she is so good but she never considered fibro (and she should seeing my MOM has it).. finally she did a pressure test and looked more at my symptoms and started me on lyrica.. ive only been on about a month.. i still hurt like crazy.. by the afternoon/evening im dying.. dont let me sit on the couch b/c then i hurt like heck trying to move around..


what works for you? i suppose im in a "flare" because i hurt all over.. my shoulder upper back lower back across my hips and my knees.. my knees wake me up at night.. b/c they burn and hurt so bad..



do you have like HOT searing pain or just aches.. mine are like HOT blades of metal sticking in me.. ive had cortisone.. whatever nothing helps.. i do see a difference in my fatique now on the lyrica.. i do feel more rested but i still hurt.. by 7pm im done.. and i have to have a heating pad on my back ALL the time!

Post Edited By Moderator (Admin) : 8/23/2010 5:36:44 PM (GMT-6)

Posted 10/8/2009 5:36 PM (GMT 0)
So sorry for all your pain - but glad you got a diagnosis. I use the heating pad too, or a hot bath. I'm in the middle of a nasty flare myself. I feel your pain (literally). Sorry the Lyrica doesn't seem to be doing much. Give it some more time....then talk to your doctor. Hope things settle down for you - for all of us.
Posted 10/8/2009 5:37 PM (GMT 0)
Welcome to the forum, glad you found us, sorry you had to.

Sure sounds like fibro to me. In addition to the Lyrica, you probably need something for the pain. Tylenol is better for nerve pain than one of the NSAIDS (ibuprofen etc), and there is a prescription pain killer called tramadol (Ultram or Ultracet when combined with Tylenol. You might ask your doctor about that.

If the Lyrica doesn't work, ask your doctor about Elavil (amitriptyline) as a sleep aid. It promotes stage 4 deep sleep which is what fibro patients are usually not getting enough of, which is what causes the extreme fatigue.

I don't have hot blades of pain, I do have aching pain all over when I'm in a flare, especially in my back, like I have the flu or something. For the knee pain at night, which might be restless leg syndrome, you could try potassium supplements at bedtime, that works for me. Or there is an rx drug that I can't remember the name of that really helped my sister in law.
Posted 10/8/2009 6:05 PM (GMT 0)

Hi Pansy 27

Welcome to the boards.

I'm sorry to hear that your in such pain. I hope the tramadol suggestion beanley said can help. I didn't realize that Elavil may be a better sleep aide than Ambien CR? I wonder if this is something I should look into?

Pansey you will find so much info and people here that really know what you are going thru!

Posted 10/8/2009 7:14 PM (GMT 0)

Hi...and welcome!  I have not found any prescription meds to help the pain but many have.  I only take Advil and Tylenol as the side effects from other things I tried were too disturbing.  A hot bath takes away the sting and burn...at least for me.   And yes...especially when I am laying down I feel like someone is stabbing me with a hot, searing  poker on the sides of my knees and hips.  It does wake me up through the night even though I take 5mgs of valium for Restless Leg Syndrome.  The 'butt burn' is especially painful, as it travels down my thighs and legs.

I hope you find some relief and as you probably know, some days are better than others.  But fibromites are strong and we will survive!

Donna

Posted 10/8/2009 7:42 PM (GMT 0)
Hi Pansy, welcome to the forum. Sorry you are flaring. The change in weather has brought
on flares for many of us, myself included. This morning I did the hot bath, gentle stretching,
and took 2 excedrin and 10mg. of cyclobenzaprine (Flexeril). I am feeling a lot less pain
than I did this morning. I also take Savella 50mg 2x daily.

You asked about fibro pain description. My fibro pain feels like a deep burning bone
crushing pain. Sometimes I get the needle-stick pain with it. I once decribed my pain
to my husband as an allover body throbbing toothache. My heating pad gets used alot!!!
Hope you can find a good med combo for pain relief.

Hugs

Robin
Posted 10/8/2009 10:37 PM (GMT 0)
Hi Pansy,

   I too use the hot shower method. Until I get a new waterbed mattress I've invested in a queen

size heated blanket. It makes sleep much easier as the heat goes into your body all night long

instead of just a fast blast. I do herbals for the pain and have knocked the amount of painkillers off

until it's almost nil. The malic acid they recommend here does help. They say that a lot of fibro people

are vit D dificient....I'm outdoors nearly everyday so I get bunches of sunshine.

            Nana Monster

Posted 10/8/2009 11:28 PM (GMT 0)
I just wanted to reply to the tramadol... I am on tramadol it helps with the fibro and some of the pain from my back and neck injuries. It was cutting the fibro pain in half.
I truley hope you find some relief cause this stuff really hurts!!! mad

But we all are tuff cookies!!! blush take care, be strong. Laura wink
Posted 10/9/2009 1:49 AM (GMT 0)
Hi, I'm new too! I'm experiencing a horrible flare up the last few weeks! :( I've had fibro for 7 years. Haven't really found anything that helps. I'm allergic to flexeril and tramadol. What helps you all get through the pain?? I think that the weather change has had a lot to do with it. Also has anyone else been diagnosed with vertigo?? Hope you all feel better! :)
Posted 10/9/2009 9:30 AM (GMT 0)
Hey everyone!  I was dx'd with fibro in July of this year and I have a wonderful family Dr. (on here I call him Dr. Great Guy).  My rheumy is good but her personality is really bland.  But she knows her stuff and she listens to me about treatment.  She doesn't do pain killers passed muscle relaxers and NSAID's.  I tried Flexeril and Mobic but they had the reverse effect on me- they made me really edgy and I couldn't relax.  Plus they did nothing for the pain.  Tramadol, Ultram, and Relafen were like taking nothing at all.  Cymbalta had too many intolerable side effects.  Neurontin dulls the pain.  Vicodin (hydrocodone) makes it less abrupt.  Neurontin and Vicodin together take care of about 80%.  Since I don't know how long they will allow me to take the Vicodin, I am trying the Malic acid/Magnesium combo that Ginny (((hugs))), recommended.  I have noticed a difference and hope that maybe it will take the place of the Vicodin.  I have also noticed that I need less Vicodin (I take 1,000mg every 6 hours) when I hit the fibro with a vitamin cocktail!  smurf    It consists of:  Folic Acid; 5,000mcgs of Biotin; 1500 mgs of Vitamin C; 2,000 mgs of Vitamin D; and a Malic Acid/Magnesium combo.  All of that with the Neurontin and I need less Vicodin.   I hope this helps!  I keep picking up great tips here and as long as someone has something that works for them I am going to try it!!!  Thanks to everyone at the Fibro Healingwell forum, you are family to me.
Posted 10/9/2009 1:58 PM (GMT 0)
Hi pansy and mouseygirl and welcome to the family. Pansy, I get burning pain, dull aching, sharp pain and tingling pain just depends on what fibro is in the mood to do to my body. I have a place between my shoulder blades on my spine where fibro decided to stab me with a knife right at the moment.

 

I think we have more members flaring than not at the moment. I know here in central Illinois it has been raining and the temp steadly dropping and my body hasn't liked this for the past few weeks.

 

I describe my pain to normals as going to the gym and working out hard for two straight days but I didn't have to do anything to feel like that.

 

I take 100 mg of amitriptyline at night and take tylenol during the day. I'm going to try neurontin this weekend when DH is home, I have medphobia and won't try a new med without him being here in case I have a bad reaction. I really hope it works. Heat in any form helps. I do use a TENS unit to interrupt the pain signals sometimes but right now the pain is so wide spread I don't know where to put it. My beloved pulsating massage showerhead broke a couple of weeks ago and I have tried four new ones and still haven't found one equal to the old one. It would beat on my sore muscles and make them contract and it felt so good.

 

Stick with us there is a lot of great info on here.

 

luv and hugs

Marlee

Posted 10/9/2009 5:49 PM (GMT 0)

Hi & welcome. Sorry you are having so much pain. As Marlee said, the rain & cool weather here in Illinois is having an effect on me too. My pain is usually like Marlee described, like I have been doing hard work outs or very physical activity for days straight. Right now it is an all over throbbing pain & not much is helping. I do take hot showers & use the heating pad for some short term relief. Even my pain meds aren't helping this time.

I have been having terrible pain in my legs & knees the last 2 weeks. I can hardly walk in the mornings. I have to sleep on my back because of my sleep machine, so I have been putting a pillow underneath my knees & it seems to help me rest better. I also take flexeril & Klonoin in the evening to help me sleep.

When I'm not flaring like this I find that gentle stretching exercises help. You can find them in the Fibro 101 thread. I wish I could help more. I would talk to your doctor so you can get some kind of pain relief. Good luck & keep us updated!

                                                                              hugs,   Springfling

 

Posted 10/9/2009 6:39 PM (GMT 0)
thank you all for responding.. i know its a long hard road with just trying this and that..

im on nortriptylene.. but my mom takes amitryptilene to sleep..

who knows.. i think that once i get my meds right maybe ill feel better.. we did go up on my meds again .. so i hope this will be better.. who knows..

my back is a little better today!

its good (& BAD) to know that im not crazy when i stay hot stabbing pain.. its like to the bone in the bone pain.. theyve never found out why.. til now.. :(

and my skin is soo sensitive i can brush up against something and end up with a rash.. whats up with that??
Posted 10/10/2009 8:46 AM (GMT 0)
For me it's like having a long, quick, knitting needle that's been held in a flame, then sudddenly jabbed into me, causing my muscles and bones to just throb. It makes me twitch too, like a current is coming thru the invisible needle. Awful. I know exactly how you feel.
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