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shannahsmom
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 3/30/2010 6:56 AM (GMT -7)   
I'm recently diagnosed but I'm sure I've had this for years perhaps all my life. When I'm feeling up to it I surf the web looking for information on this disease and it makes me frustrated and angry. The doctors that I've seen so far (my family physician and a rhuematologist) think they know exactly what this is...it's a pain disorder. There is something awry with how our brains process pain...period. My family doctor went so far as to say, well it's not pain that's going to kill you and people without arms or legs work. Obviously looking at all the different problems most ppl with fibro have it's not just a pain disorder. I just looked at a website of a chiropractor claiming he knows what causes it... cervical spinal stenosis. That's it! If we just all get our necks adjusted we'll all be fine. Most days (well for part of the day anyway) I can tune out the pain enough to function ok. Other days I feel like crying thinking ....is this what my life is going to be from now on? It's so tiring sometimes just being and I don't even work at the moment. I can't imagine trying to work fulltime like this, it's so unpredictable. Like if I get woke up in the middle of the night, my whole next day is shot I'm so sore and tired I can't move. It seems like everybody out there has the answers....but as far as I can tell nothing works. Exercise helps but it doesn't get rid of the pain. Medication helps but at the expense of your mental clarity. Suppliments help but they're so expensive. I'm tired of people telling me they know what I'm going through because they have aches and pains too. I used to have those aches and pains, what I would give to go back to having those. I promise I wouldn't whine about a single one! It scares me seeing all the numerous problems some of the people on her suffer with and I wonder is that what I have to look forward to? Already the stomach problems have started that I never had a few years ago. New places with pain that never bothered me before :( I guess I'll just keep looking and if I find the miracle cure I will let you all know.
Shannahsmom
Fibromyalgia DX Dec 2009, bilateral epicondylitis, IBS.... stay tuned more to come I'm sure.
 
No one is in charge of your happiness but you.
Don't take yourself so seriously, no one else does.
What other people think of you is none of your business.
Life isn't fair, but it's still good.


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 3/30/2010 8:12 AM (GMT -7)   

Hi!  I don't think you will find a person on this forum that has not gone through what you just described.  That's what makes this disorder so insidious and cruel.  We 'look' fine.  I don't think I look fine 'gimping' through a grocery store humped over a cart counting the minutes until I can get out of there.  I believe I have had this since I was a teenager...long before fibro was even known to the medical community.(I am 64 years old now)  Over the years, I have been dx'd with anxiety, IBS, peripheral neuropathy, RLS, 'chronic pain disorder'...all before fibro finally was recognized and defined.  I have been taking somekind of OTC pain medication since I was twelve years old for all kinds of aches and pains.  And yes, because we go through periods of time when we can actually function, most fibro illiterate people think we are just hyperchondriacs.  My son just told me the other day that one of his co workers has MS, Lupus and RA and comes to work every day...God Bless her.  I know he told me this to put my pain in perspective and I really try to do this. Many of us have other disorders that cause pain also, along with fibro, including myself.  I think one of the main problems with trying to get others to understand, is that this disease is multi dimensional and there are so many other issues that compound the problem...not just pain.  The Fog can be the worst...and the up and down all night long trying to find a place to sleep that is comfortable, which in turn causes fatigue.

I just keep on keep on, and know that I will have good days.  And oh yes...I love it when some stupid doctor tells me this disease is caused by parasites...or the abundance of anti biotics that plague our food supply nowadays.  My favorite...pounds of bacteria ridden feces that stay lodged in the colon wall for years.  Uh, no.  I have heard it all!

 

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: valium Advil


Irish Babe
Veteran Member


Date Joined May 2007
Total Posts : 1371
   Posted 3/30/2010 8:39 AM (GMT -7)   
Good morning.  I just went to have my mammography done this morning - crack of dawn- love it! I hurt like crazy, it is raining w/ no particular end in sight, my heavy winter coat was so soggy, sitting in the most uncomfotable chair, waiting, praying to get in, so I could get out.
 
The tech was very nice, tried to be gentle, but moved my arm up where she needed it. I have other problems besides Fibro, my arm doesn't go where I want it, it wasn't moving where she wanted it. I told her not to press on my shoulder, she stopped. She asked if I had any other problems. I said I have Fibro. She said 'You know, they have meds that help w/ that'. I looked at her and said, 'Not as well as you might think'. This was a woman in the medical field, who believes these commercials. 'Take this and you will feel great'. I took a Tylenol before the test, just to hopefully take the edge off of this. For me this test is not just about crushing the life out of my breasts, it is also having my arms go up and hang in painful positions, pulling my back and as such, my legs in twisting positions. Feeling totally nauseous from the pain.  Ppl don't realize how this affects you. UNLESS they have it.
 
I have had this all my life, just dx a few yrs ago. I have miserable days, I have some good days. This forum has been a godsend, to know there are ppl who actually know what you're talking about, they understand. Some drs are not worth our time or money. They have closed minds, and bless their pointy little heads, they DO know it all. NOT! But there are some good drs, keep looking for the one(s) to help you. You are worth it.
 
God bless.  Alice.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/30/2010 8:58 AM (GMT -7)   
I've been up since just before 4:00 AM due to pain. I already have had one hot shower
and one long soak in the tub and an hour on the heating pad. I'm getting ready to go
for a walk. Hoping to walk off the pain and the frustration. It's just another day in Fibro
Land. OK I'm being sarcastic! Some days are good and some days are bad and some
days are frustrating and make me quite mad. This just happens to be one of them....

I know I will feel better emotionally after my walk. Shannahsmom, see we are all in it
together. Believe it or not I'm still happy, I have a great hubby who loves even though
I can be crazy at times, wonderful family and friends and I'M LIVING.
Hope all our days get better!!!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


not just lazy
Regular Member


Date Joined Mar 2010
Total Posts : 42
   Posted 3/30/2010 10:09 AM (GMT -7)   
I am recently diagnosed, too. And I completely understand how you feel. I find myself going back and forth (in my mind) alternately thinking 'I just hurt so much today' and then telling myself to 'stop being such a crybaby!' I don't know if that makes any sense. Today seems to be particularly bad because I woke up with the worst migraine I've ever had, on top of all the fibro pain and back pain. (Big sigh...) Sometimes I wonder just how much the human body can really take.

But I know I am very blessed to have a great doctor who understands about all my issues. She always takes the time to really listen to me and never rushes me through a visit.

Hugs,
Natasha
Fibro, DDD (degenerate disc), reflux, migraines, OAB

Meds: Mobic, Prilosec, Ambien, Vesicare


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 3/30/2010 10:36 AM (GMT -7)   
Oh, I can so relate!! I too have had this deep aching sensation in my muscles for as far back as I can remember - probably when I was 15 or so. I couldn't understand why everything made me hurt, especially when none of my friends experienced the same problems. I remember seeing doctors who said to me "oh, it's probably just arthritis and you'll have to learn how to live with it". No tests, nothing, just a pat answer to send me on my way.

So, I have spent 30 years dealing with this, while going thru life as (a) a single mom, (b) a career woman, (c) a wife...etc. I have worked full time for the last 17 years, and it's only in the last 6 months I had to finally say "enough" and go on disability (due to a lot more than just Fibro, as per my signature below). My body just gave out.

I think the worst part of Fibro is that it's an internal disease...it just doesn't show on the outside. That of course leads to the issues of having to "prove" you have it, "defend" that you have it, "explain" how it affects you, and on and on. Every one of us on this board has war stories, I'm sure of it. I think the thing that's worked for me the best is that I have no trouble speaking up and correcting someone or silencing someone who just doesn't get it. I've told doctors they are wrong when they "pooh pooh" me...I just can't let people wallow in their ignorance about Fibro, so I correct them. Many people have said afterwards that they just didn't realize how bad it really is. Others have apologized for making light of a serious issue. Still others have vowed to find out more and to share their new-found knowledge. And unfortunately, many have just looked at me skeptically and gone their merry way.

I wish there was a Walk for Fibro (but no one with it would be able to participate...ha ha), or some type of fundraiser that would bring awareness to the masses. I've often thought "well, maybe I should start something"...all I know is that we just can't stay silent any longer. We who have Fibro must start educating others, so we're no longer looked at with doubt.

I have learned over the years that there are some days where I feel pretty darn good. I've learned there are some days when death wouldn't relieve the anquish I'm in. All I know for me is that I refuse to give in to this insidious disease - even at it's worst, I can see hope .

The best medicine I've found doesn't come in a tube or bottle or IV - it comes from hanging out with others who have Fibro and who "get it". My biggest relief is when I vent and the people I vent to can all related to me in one way or another. They understand, and they know exactly how to comfort me in stressful times. My goal is to be able to do the same when others need a shoulder to lean on. As long as we have Fibro, we will have a support system. I just pray for the day when we see an actual cure...not a treatment...a real cure!

Hang in there shannahsmom (and everyone else here who replied). We will not let this Fibro beat us....not as long as we have strength to stand together.

Gentle hugs to all of you,

Pam
Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (Surgical Menopause and drug related), plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Flexeril, Clonidine plus Vitamin D and Multi-Vitamin daily


harleybluz
Regular Member


Date Joined Sep 2009
Total Posts : 122
   Posted 3/30/2010 1:23 PM (GMT -7)   
I'm starting, today as a matter of fact, a study for FMS. It's called Cranial Stimulator Therapy. You stay on the same meds/routine you do now and then wear this CST for 60 minutes in the evening. Hopefully, it will help with the depression/pain/insomnia, etc of FMS. The voltage they use is so minimal that you don't feel it and it clips on your earlobes. I've read alot about this and it's worked well in other medical areas. It's an 8 week study. I know that's a long time to wait but I'll let you know how it works. If I can get some relief from the insomnia that'd be great. If I finally do get a decent nights sleep I feel less pain the next day and am able to walk. Sleep is such a big factor in this. Our bodies won't restore itself without it. So anyway, wish me luck. If this works I'll be able to get a prescription for the contraption and it will cost me half the amount ($500.00) than it would without the study and I just can't put out that kind of money without knowing I'll get results. However, if it works, it would be cheaper in the long run than the drugs or supplements that cost so much.

This is no Social Crisis... Just another Tricky Day (The Who)

 

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