Disabled due to pain UGH!

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shanbr
Regular Member


Date Joined Dec 2009
Total Posts : 103
   Posted Yesterday 4:53 PM (GMT -6)   
Hi, I usually post in the fibro forum, but found out this one existed today.

about my pain:
I have RA and Fibro. My RA is getting under control, but i have a massive amount of pain.

I am wheelchair bound due to the pain only. It is so painful that i have slowly gone down through canes and walkers and now stuck in the house.

My husband hopes to build a ramp soon, but we lack the funds so walking the 4 stairs is extremely painful. He basicly pulls me up from chairs and up the stairs.

I was completely bed ridden before prednisone was given. The pain was so much my husband rolled me over in bed, sad me up, dressed me etc.


My treatment:
I am on methotrexate 6pills (still going up little by little), lyrica (was on smallest dose, they doubled it last month) and they lowered my prednisone to 5mg hoping to get me off it. Pain has nothing to do with my meds.



Does anyone else have Fibro pain from head to toe that disables them too?
It feels as if someone is taking knives and just stabs my shins or feet or hands, arms, neck etc. etc. etc.


Thank you all, i wish you well. God bless.

----------------
Forgot to mention:
----------------

I am on low dose lortab for pain and take 3 ibuprofen couple times a day.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted Yesterday 5:20 PM (GMT -6)   
Welcome to the boards!!.. I am sorry to hear you have so much pain and it disables you to have to be in a wheelchair...That must be because of the RA as I don't know about all the levels of this...but I know others on here have this as well...

I'm sorry to hear that the Lyrica is not helping at all with your nerve pain from the Fibro... That medicine was specifically made to help with the nerve pain issues...Maybe your Dr. can have you try Neurontin or Cymbalta...those have also helped people with Fibro...

As well as I know my Rheumatologist wanted me to be as active as I can be to help with the sore muscles and not get stiff...So I walk each day for 30-45 minutes...

So have they offered Physical Therapy to you to help do things while in the wheelchair so you don't lose all your muscle tone? Or aqua therapy I think would be extremely beneficial and know it helps some people greatly...

So it's a catch 22 for you if your RA is making you immobile...that will only make the Fibro worse...

Also...when I was diagnosed back in 1994...the Rheumatologist (who is known now as one of the top Dr. in the country for Fibromyalgia)...he was one of the first to really start studying this and acknowledge it...

One of his strong beliefs is that along with over active nerves...that it's about lack of stage 4 sleep...that there is something in our immune system not allowing us to get to this...so then our bodies do not 'repair' themselves overnight....and then this happens night after night...Even if people sleep for 8 hours...they will not be rested or getting good sleep if they have Fibro...

Once I actually started Ambien back in 2006....which was because I was recovering from a 3rd fusion surgery....within a week...my Fibro symptoms of fatigue were literally 80% better....the next weeks I was literally bouncing off the walls I was so happy and giddy and haven't felt that good in 12 years!!! It was amazing to me...I didn't realize how much my lack of sleep effected so much of my well being...so the increase in my immune system....as well as increase in my energy and mood helped my pain levels tremendously....

I was also using Cymbalta at the time to help with the nerve pain...And now I am just using Flexeril from time to time to help with muscle pain that happens once in awhile with the Fibro but more constant in just my neck because of surgeries...

I have also found that eating foods that help with inflammation really help...as well as avoiding one's that cause it...
So for me...I have been in what my Dr. says is Remission of my Fibro for a few years....

My point in all of this is there are things that can be done to help...and if your Rheumy is not doing all he can with PT, medicines, and other modalities...I would be seeing someone else!..

And as I'm sure you know the pluses and minuses of Prednisone...but corticosteroids have their place from time to time to help with the RA...but long term use can cause other issues...since they are 'replacing' the cortisol that our bodies naturally produce by the adrenal glands..

Unfortunately there aren't too many Dr.s that think that opiates are effective in treating Fibro pain...they usually stick with nerve pain medicines or muscle pain one's...

Have you tried anything like Flexeril, Skelaxin or Robaxin to name a few?

And I also wanted to mention that you can put your name on a list at local churches to possibly get help with building a wheelchair ramp for your home...I have done mission work for years and during the summer...I would lead youth group trips to go and help homeowners like yourself do those kind of things....so it's worth a try...or even having your friends/family do a fundraiser to help raise the money to build the ramp by Home Depot or Lowes...

We are happy that you popped over here and are welcome anytime!! All of us here can empathize with your pain issues...

Sending you some gentle welcome hugs (( ))

Post Edited (Snowbunny21) : 6/17/2011 5:24:06 PM (GMT-6)


shanbr
Regular Member


Date Joined Dec 2009
Total Posts : 103
   Posted Yesterday 6:20 PM (GMT -6)   
Thanks for all the information.

I haven't been on the medications mentioned, nor have i talked with a doctor about physical therapy yet. I do need to bring up the fact that things aren't working :(

I will look into the inflammation foods in hopes they might help some.

Thanks again :)

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted Yesterday 9:13 PM (GMT -6)   
Hi shanbr Welcome to our chronic pain board. The people here are very supportive and empathetic. I'm so sorry that you have so much pain. I don't have the rheumatoid arthritis but I do have osteoarthritis in my back, knees and hips, so I do have some idea of the RA pain, although my joints don't swell like your's probably do. Having Fibromyalgia on top of it has to be extra bad.

I hope you're able to get some better treatment for your pain. I agree with snowbunny. If your current rheumatologist isn't prescribing the proper treatment for you, then you should find another one.

I wish you well. I hope you are having a tolerable night.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted Today 1:32 AM (GMT -6)   
Hi, and welcome to the board.
 
I, too, have fibro along w/ several other pain and health issues.
 
I would definitely say that you need to share w/ your doctors that your pain isn't covered.  There are so many meds out there.... and, who knows?  One may work wonders for you.  So, I'd really encourage you to get in to see your doctor and let them know how your quality of life is really affected by the FM.
 
Before I was stable on my meds (narcotics; muscle relaxer; nerve pain med; anti-depressant; etc) - I was almost bedridden w/ pain on a daily basis.  It took lots of hard work - and many bumps in the road - but I finally found the right combo for me.
 
I totally agree w/ much of the info SnowBunny gave you.... I think sleep plays a MAJOR role w/ fibro.  It wasn't until I had a sleep study - I actually had to repeat it, so I had two - that I realized I was NEVER hitting REM sleep ("deep sleep").... hence, I don't think my body was every getting the chance to repair/recover. 
 
My muscle relaxer helps my pain as much as my pain meds. 
 
Anyway, my pain is not gone by any means - I'm about a 6 to 7 on a daily basis... but, before the right meds, I was at a daily 8 to 9 - and schedule to have a pain pump put in.
 
Anyway, again welcome... and hope to get to know you better.  --Tina

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted Today 9:21 AM (GMT -6)   
I just wanted to add since the one part in my post I didn't write very clearly...

What I was trying to say was that unfortunately many Dr. don't believe in prescribing narcotics for Fibro...but I know that many get relief with a combination of medicines..including those....as Tina wrote above..

It was more about how some Rheumatologists shy away from them because of more strict regulations or non belief of narcotic usage...so it's about finding a Dr. willing to look at everything...or even seeing a Pain Mgmt. Dr for medicine and then the Rheumy for other treatments if needed..
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted Today 10:37 AM (GMT -6)   
I've tried all the meds, some more than once, all with intolerable side effects. The only thing I can count on is tramadol, and my pain doc seems to want me to cut that down from 3 to 2 a day. He has me adding Topamax, in the anti-seizure meds category as lots of the other "fibro meds." Starting again after being off it for surgery, I am tolerating 1/8 pill (of 50 mg) twice a day without side effects; doc hopes I can build up to half a pill BID.

I'm extra sensitive, so I never try anything new without researching and usually trying a half dose at first. My docs seem to put me on the target dose, not a trial dose, unless there's a package to build up. Except for pain meds, that is, some of which would help more in twice the prescribed dose, or for twice as long. I wish I could take Flexeril, which worked for pain, but it interacted badly with tramadol, causing me loss of temperture control - turn beet red and sweating. I'd like to use diapazem for muscle relaxation, which it does well, but my pain doc won't allow it - might get addicted.

I totally agree with the other posters, that exercise is critically important to fibro patients. Even when I'm on the couch after surgery I'm doing what exercises I can, even if it's just pulling shoulders back or small leg lifts. My rheumy insists on trying to exercise more, wants me in a pool - ok, maybe today it'll be warm enough. Your doc can give you a Rx for aqua therapy.

For back muscle spasm pain doc Rx'd a little portable TENS unit. They're $25 -50 on Amazon, or $75 list price from manufacturer. It stops the pain and muscle tightening/spasm cycle much faster than my heating pad. Acupressure is supposed to do that too. I haven't found a way to get it to work on my biceps - tightening from shoulder impingement, but I can use it when driving to appointments. Doc previously gave me 3 cortisone injections in back muscles that stopped a lingering spasm.

Best wishes, and I hope we've provided you with hope and suggestions to help with your pain. I read these encouragements and find they give me ideas to help myself. Thanks to all.
Alcie
 
 

shanbr
Regular Member


Date Joined Dec 2009
Total Posts : 103
   Posted Today 5:20 PM (GMT -6)   
Thanks everyone for your responses. I have learned a lot.

For Alcie:
I take Flexeril and noticed my cheeks getting really read and i sweat like crazy too. My dr. also says to get my butt in a pool. I have trouble getting out of the chair and am 300lbs due to not being able to move. How the heck am i going to get in a pool? lol

Thanks everyone again for the info and best wishes, god bless. :)

shanbr
Regular Member


Date Joined Dec 2009
Total Posts : 103
   Posted 6/20/2011 2:23 AM (GMT -6)   
Luckily for me, my family doctor who is the main one keeping all the others in check is completely wonderful. He can see my pain when i try and walk etc. so he isn't afraid to help me. He has been working with my lyrica while waiting for that last rhummy appt which was my first with that rhummy, and trying pain meds. I have lortab low dose 3 times a day, but as treatments are being done, he says he won't stop here if i need more help.

I have been really bad for about 6yrs, might be 7. I have been to several family doctors, rhummy docs etc. trying to get proper treatment. I think i might have a good set of doctors here. They have tried checking my liver, lungs and heart to make sure i am not falling sick from other things. I just hope things do well soon.

I have been sick for my daughters high school and jr. high years, the most important bonding ones and I was really hoping to be on the right stuff by now. She has one year left and i hope to be mostly pain free by then.

I am blessed that my daughter is a great kid, very helpful, good grades etc. I am also blessed that my husband is so very helpful, loving, caring etc. He has never got mad at me for having to do so much for me. I feel sad for those who don't have that support at home. It is what helps me make it through the day.

Thank you again everyone. God bless you, people like you are what people like me need. I know it sounds wrong, but i am glad to find people with chronic pain. Lets me know i'm not alone. My mom has always had chronic pain, not as bad as i am, but pain is pain and hers is constant. I guess i inharited it :(

Nite all.
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