Anyone in HUGE pain?

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shanbr
Regular Member


Date Joined Dec 2009
Total Posts : 103
   Posted 6/15/2010 9:05 PM (GMT -7)   
I'm trying to find others like me to chat with.
 
If lucky, i can go out of the house using a cane and my husband's arm to walk.  I will use a driving buggy cuz i can't walk with the push carts.  I am in severe pain all the time and that is my good day.
 
Anyone else disabled with this?  I know we all hurt, but i like to hear how others who are this bad get by.
 
I am on lowest dose so far of lyrica twice a day, paxil, another of those for sleeping.  I buprofen, of all pills, is the best pain killer at prescription strength, but it causes my organs and feet to swell so i can't use it.  Ultram doesn't touch it etc.
 
Thanks smurf

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 6/15/2010 9:14 PM (GMT -7)   
Hi shanbr, most of the time, I'm not in great pain, just dull. But sometimes, yes, it can get really bad.
I used to be a lot worse off, 20 years ago. Chiropractic care helped, and then being on a low dose of Nortriptyline.
Have you been this bad for a long time or are you new to this situation?
  Achey 
 
    Diagnosed: Fibromyalgia, possible Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 6/15/2010 9:44 PM (GMT -7)   
Hi shanbr,

I do have some days where it just hurts to breathe. Today just happens to be one of them. But I had a lot of extra physical things happen today, like grandkids and a rambunctious Golden Retriever puppy...who's 6 months old, over 50# and thinks she's a toy Pomeranian...lol Most days when I try to do a small amount of work where I'm bending over just a bit...like loading the dishwasher it feels like my lower back, hips and lets are on fire. Then it moves up to under my shoulder blades. You mean THAT kind of pain? <sigh>

I have been on quite a few medication for years that are life-long ones and after I was dx'ed with fibro I've been on pain meds. They do help but there's nothing that will totally take the pain away.

So what to do? My philosophy is that I'm going to hurt whether I sit or get up and do something...probably less if I do something. So I might as well do what I want within reason and at least get something for my pain.

I would suggest you consider talking to a couple of pain management clinics/doctors and see if one of them would work with you in a manor that you want. Too often someone gets a referral to a pain clinic and the doctor jerks them off of their former routine, messes with their medications...either taking them all away or piling them on. So you have to interview THEM..after all you are doing the hiring here, not them. Also there are pain psychologists who can help a great deal. Dealing with the emotional aspects of fibro is about more than anyone should have to handle alone, or even with help. But these folks do help with pain control a bit and also how to live day to day with CP.

Hope something helps you...
Chutz
Gravitation is not responsible for people falling in love.
Albert Einstein

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Sheila1366
Regular Member


Date Joined Aug 2005
Total Posts : 384
   Posted 6/16/2010 12:40 AM (GMT -7)   
Sorry you are in so much pain. I have pain everyday but not to the point where I need a cane or assitance walking. When I am at my worst I try and rest but it is not always that easy I know. When you got things you need to do everyday resting can sometimes be hard to do.

I try not to panic when I am in a lot of pain. I am always afraid that the pain will continue to get worse and I will not be able to handle it. I have to take medication to help with anxiety and it has helped me to stay calm in the middle of the storm.

I wish I had a magic fix for you, I am still trying to find one myself. I just try to live my life despite it all.

Hope the pain eases up soon.
Fibromyalgia,arthritis,raynauds syndrome,gastroparesis,IBS,depression and roseca
 
God and Family is my life.


Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 6/16/2010 1:17 AM (GMT -7)   
Tell your DR you would like to try Indomethocin, Cymbalta and Baclofen.  I to have a sleeping pill, but if you are in that much pain just ask him or her and don't take no for an answer. Those three pill do really good for me. What does it hurt to try?
 
HARA

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/16/2010 8:07 AM (GMT -7)   
Hara, just out of curiosity, do you have arthritis and/or other inflammatory illness? I'm not sure why Indomethacin would be prescribed for Fibro, as it's an anti-inflammatory and there is no inflammation with Fibro.

I've never tried it before...I am getting good pain management now with what's listed in my signature. shanbr, it can't hurt to ask your doctor for better pain relief...there is likely something out there that will work for you. Make sure you eat well during this time, and get lots of rest. I've recently started using a cane (because of my Fibro and some other issues) when I'm walking and that's been a great blessing for me. Worth thinking about.

Well, hope to see you around here more. I"m looking forward to hearing how you're improving!

hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/16/2010 8:34 AM (GMT -7)   
Hi Shanbr, I'm sorry you are hurting. I do have a number of painful conditions. For me
it is easier not to focus on the pain (although I'm hurting) and get myself into an activity
that will help me distract from the pain. I do tend to keep myself fairly busy, if only my
mind sometimes by reading or watching a movie. Distraction and walking help me. Getting
together with friends and laughing is also important. Isolation can make you hurt more.

I'm a big believer in relaxtion therapy, deep breathing and meditation...anything that helps
relax my muscles...soaking in a hot bath, long hot showers or using my bedbuddy.

I take Savella 50mgs 2x daily and use a muscle relaxer Flexeril(cyclobenzaprine) for
flares. Distraction helps me immensley ...if I thought about how bad I feel on a daily basis
it would be hard to function. Take one day at a time and I hope you will feel some pain
relief soon.

Sending gentle 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
 
 


Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 6/16/2010 9:20 AM (GMT -7)   
MsBunky said...
Hara, just out of curiosity, do you have arthritis and/or other inflammatory illness? I'm not sure why Indomethacin would be prescribed for Fibro, as it's an anti-inflammatory and there is no inflammation with Fibro.

I've never tried it before...I am getting good pain management now with what's listed in my signature. shanbr, it can't hurt to ask your doctor for better pain relief...there is likely something out there that will work for you. Make sure you eat well during this time, and get lots of rest. I've recently started using a cane (because of my Fibro and some other issues) when I'm walking and that's been a great blessing for me. Worth thinking about.

Well, hope to see you around here more. I"m looking forward to hearing how you're improving!

hugs,
Pam

 

 

Yes I do have arthritis also. Just trying to throw Ideas out there.

HARA


kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 6/16/2010 11:16 AM (GMT -7)   
Hi sorry to see you in so much pain, I swear by BACLOFEN, for me it is a life changer. I sleep better and when the pain gets really bad I reach for it. I am blessed now some years ago I was where you are now I cold not even get out of bed my myself. We are lucky here in Australia the govenment paid for me to have steel bars put in my bath tub, toilet also a bath board for me to sit in the shower with. I had someone come and see how high my recliner needed to be so I could get out off it without help. My husband would not let me go into a wheel chair. I am glad he took that stand now. He gave up work at a job he loved too become my full time carer. We havea pension system here that allowed that I was on the disabled pension still am I am no where as bad now as I was then. The Doctor who gave me the pension said to me she never wanted me as a patient as no specialist knew how to treat me let alone a normal Doctor. My Doctor who was a retired specialist FMS told me at the time I was the worst suffer in the world I had Doctors from all over the world following my case. The only reason I did not die was because it never effected my heart badly. So it went to my organs, my blood pressure went mad and still does to this day I really love seeing a new Doctor they take my blood pressure and it can be sky high and ten mins later it is low. I can really understand how you feel. i was raally blessed I had remission for 2 whole years I went from totally crippled to no pain at all I did not even take a panadol in that 2 years. I dropped out nowhere near as bad. Late last year it happened again when I started Baclofen and now I still have bad days but a couple of panadine forte [high codine pain killers] and I can cope.
At my worst I was taking in a single dose twice a day 25mgs of valium, 24mgs morphine 100 mgs endep plus hand fulls of other drugs and I was still in pain.
My prayers are with you
Kathy

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/16/2010 5:43 PM (GMT -7)   
Hara said...
MsBunky said...

Hara, just out of curiosity, do you have arthritis and/or other inflammatory illness? I'm not sure why Indomethacin would be prescribed for Fibro, as it's an anti-inflammatory and there is no inflammation with Fibro.

I've never tried it before...I am getting good pain management now with what's listed in my signature. shanbr, it can't hurt to ask your doctor for better pain relief...there is likely something out there that will work for you. Make sure you eat well during this time, and get lots of rest. I've recently started using a cane (because of my Fibro and some other issues) when I'm walking and that's been a great blessing for me. Worth thinking about.

Well, hope to see you around here more. I"m looking forward to hearing how you're improving!

hugs,
Pam




Yes I do have arthritis also. Just trying to throw Ideas out there.

HARA



Thanks Hara...I thought maybe I'd missed something and this was a new drug for Fibro I hadn't heard about.
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


shanbr
Regular Member


Date Joined Dec 2009
Total Posts : 103
   Posted 6/18/2010 11:18 PM (GMT -7)   
Thank you so much for the responses.  I am happy and to see other are close to the same as I am.
 
I would say it all started as a kid.  I was told growing pains like most were, but it never went away.  It hurt so much, but nothing like today.  But as a kid, I couldn't play in sports and PE class was horrible and when i would clothing shop with my mom,i used to crawl into the clothing racks and sit where the bars crossed until she was done.
 
about 5yrs ago, I had polyps in my uterus and had to have them taken out.  My hip was in horrible pain.  Then, all of a sudden I couldn't eat dairy because it made my stomach sick and give me heart palpitations and asthma.  And then, at the same time as those, hurrican Katrina hit New Orleans, we live just under New Orleans and so watching everything and helping with stuff for the shelters etc. put me into a horrible horrible flair to where i instantly ended up in bed and couldn't even bring my own legs into the bed or roll over without my husband helping.
 
I have a rheumatoid factor, but no showing of arthritis anywhere which is one thing that has my doctor stumped.  He said i have all the Fibro problems, but can't figure out why i swell at the same time throughout my body.
 
It effects my legs, arms and hands, head, neck, shoulders etc.  Then it also flairs up and i get asthma attacks, swelling of the mouth, irregular heart beats, bacterial vaginosis etc.  They work together like clockwork and doctors can't think of anything besides fibro causing all of it.
 
They said that fibro isn't fully known and many patients are coming up with swelling etc. that they are going to have to change the symptom list soon.
 
I have never been pain free.  I couldn't say what it is like.  Growing up I thought everyone was in pain.
 
My mom was a smoker when pregnant with me and parents smoked while i was little.  Don't know if that caused it.
 
I just hate not having full answers or healing and I really don't want to have to give in to the wheel chairs.
 
Thanks for the responses and listening.  :)  smurf
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