Topic : Living with Chronic Pain

LOL!  I laugh at the get up and move comments.  Again, some have it worse than others.  I can say that depression does not cause my pain.... in fact I'm not depressed.  But I know many others are and I feel for them dearly.   

Get up and move!  LOL!  I do this all the time.  In fact, I'm so active, but I pay for every second.  You probably do not have all the other numerous illnesses that I do.  But I understand you are just trying to help.  I appreciate it!  : ) 

I get up and move, and in fact I work and do a physical demanding job at that.  I do not stay in bed for long periods at a time, and I do not have a motivation problem... LOL, like some would think. 

We need a cure.  Keep raising your voices louder.  Write to your state reps, get involved in the legislation in arthritis.org.  They need your voice! 

Do not give up.  Easier said than done, but it will not do you no justice.  But do not let others define your problem either.  It's not lack of motivation, it's not being lazy or giving into the pain.  This is a real illness.  Be brave and seek out your goals, regardless of this horrific pain.  And do not let the ignorant get to you. 

Hugs!  : ) 

thanks very much for the information.  currently, i am  frustrated, sad.   holidays can be difficult.  i got a 1,000 thread count egptian cotton sheet set, all so that i might be comfortable -- and all so that i might sleep!  i got a wireless phone so as to eliminate some of the wires and cords in the bedroom and "office" so that they won't cramp any space around my legs! i also received from santa gifts that could only be found in a medical supply catalog----> such as sharply-curved shower sponges for my back.  s-o-o-o-o  s-e-x-y!  

really, though, i am appreciative.  he watches; he does understand. 

if i were to get the neuro-stimulator i wonder if it would also handle the pain of avascular necrosis.  it would surely  be worth it.!  that kind of pain is much different but, as my internist says:  "pain is pain!"  i'll check it out at medtronic.   at issue is the placement of leads to cover both the upper and lower areas of my rsd  -- which is now doing a mirror-type spread:  and so i now have it in each limb. joy!  the only other "cons" to the stim are the steroid treatment for life because of adrenal insufficiency -- and any possible problem with all the inplanted "hardware" i have accumulated --[total shoulders bilateral, right hip total, left hip pinned, right ankle pinned.] 

it's ridiculous!  i am not even allowed to have an mri, and most ct scans are compromised by interference.  one of my orthopedic surgeons said that the only way to have an mri -- the most diagnostic tool to find avn in its early stages -- he said:  we would have to go in and remove the pins that are presently holding my left hip together!  i am not too keen on that idea. 

what medications, outside of narcotics, did you try?  gabapenton, amitriptylene, gabatril, cymbalta, baclofen, steroids?  _____________________ [fill in the blanks!] 

when i worked with an area doctor who specializes in rsd PROCEDURES , and admittedly it was a brief relationship of about 6 months, he requested that i stop taking methadone.  i'll try anything once or twice.  i asked how to taper and he said [this is verbatim] -- "it shouldn't take you more than 3 days."  always up for a challenge, i did it in 2 days.  i also started neurontin and gabatril.  i felt looney.  i couldn't sleep, my urine output all but disappeared.  well, dr. who's-its failed to ask or to read my chart to find out that i have epilepsy and renal insuffancy.  i felt yanked around.  we did 4 blocks plus an epidural.  it was not a waste of time because i needed to know in my heart that i had tried everything.  when i finally ask dr. who's-its why we should keep going given that the convulsions are the only results that i can count on.  he said, with his back to me,  "hmm.  well, i guess you're right.  why keep going? " so if i have a negative view of procedures, it stems from that very brief encounter. 

i want that stim... thanks, lindaw! 

and i hope you continue to do well! 

prof-de-rien 

You have indeed had multiple problems seemingly one on top of another.  I have not had these particular problems; however, between 1988 and 1998 I was involved in motor vehicle accidents (always as the victim) and elevator accidents at work (which exacerbated my FM) on the average of one each year.  And living alone, even daily activities aggravated my injuries.  There were many other problems also but I won't go into them.  I can relate to the severe chronic pain, difficulty in maintaining one's daily life, and handling all the other major bumps in the road that come along. 

Since you stated that your have prayed, I assume you have a belief in God.  God always answers.  Sometimes we are just not looking for the answers He provides.  Sometimes He says No and sometimes He says Not yet.  Then sometimes we don't ask for the right thing.  God sometimes provides us with the means to answer our own prayers.  He has not forsaken you.  He loves you and He hurts because you hurt and He hurts because you think it may be His doing.  I've been there so I know whereof I speak. 

You don't really wish you were dead.  That may put you out of your misery but think of the additional misery your death would visit upon your wife and son.  God has brought you joy.  He has given you life (He didn't promise it would be free of pain and problems), a wife and son, the capacity to love, to live together as a family.  Your message suggests that you are educated with reasonable communication skills.  In a different setting you probably have a good sense of humor.  Your Christmas gift to your wife and son is your love.  I would suggest that you share with them the truth about your crying because of the pain and not because of the onions.  You are a family and they deserve to know.  When you don't have to lie, you may feel more relaxed and less pain.  Let your family share.  That may be one of God's answers. 

Keep us posted. 

i just got back from an appointment with my internist [in whom i trust!].  the pain is much worse in every area he examined -- both forearms and hands, both legs and feet.  i've been hovering at the 7-9 pain level for about 3 weeks. 

some doctors do not appreciate the patient who comes in with a list -- au contraire, this doctor.  he says "it helps."  i try to summarize what's what with each disease; i eliminate emotional language; and we end up covering everything and quickly. 

i needed validation of my pain today -- i am embarrassed to say it. 

he manipulated the left hand & forearm to such an extent that it is still ON FIRE and contracted -- roughly 2.5 hours later. the right one is "mirroring" with gusto.   i gave him permission to poke and prod my feet and shins.  blue/purple. monstreously swollen, shiny/tough skin, extremely, ëxquisitely painful, sensitive.  i had to go w/o shoes, of course, but today, no socks either. 

he validates my pain.  why should that matter?  i've already been diagnosed!  i think it is a childish need that i have when things get "worse" -- quick, someone tell me this is or is not true!   

it has something to do with his way of "doctoring."  he shows his pain at the sight of mine. 

so -- in short, i need to spend most of my time with my feet above heart level.  yippee. 

profderien 

I understand your need to have your pain validated.  At least in this group, you should not feel embarrassed about it.  Just state your needs.   At least some one of us has been there or in a similar situation and can "emote" with you.  I agree that there are times I feel a similar need.  My sister (my only family) just says I'm out of shape--I need to exercise more!  That doesn't help when I am in the shape I am in because I "overdid". 

This is what I do.  Put my feet up, turn on some relaxing music, and read a good book (if I can concentrate) or work a word find puzzle.  I am not someone who can do nothing unless I am able to sleep.   

Sorry you are in so much pain.  Hope tomorrow will be better.  At least it is a new day. 

I believe you are not helpless the way you've continued to seek out some support. 

I did not see this post to respond.  Also, people will usually respond if they have something in common.  I hope someone responds to your post soon! 

I will pray for you!  

dear helpless,  

i am sorry that you feel this way.  no one can tell another how to feel, and only occasionally can one offer emotional support, and hardly ever financial assistance.  i would feel honored to help, if able, to help you cope -- 

i did a search with your screen name and saw that yes indeed you have gone to several boards but it really is not clear what you are expecting in return.  maybe you are used to instant messaging -- which i don't think is available here, or starting an e-mail relationship with a kindred spirit?  that does happen -- but "happen" is the key!  you can't force it.  it just happens! 

your boyfriend has been one of your major concerns, i think, and his addiction problem.  also you are trying to resolve some debt.  you were given excellent advice on how to handle that!  i am still paying $20/month on a humongous hospital bill dating from 1988!  if all goes as planned i will be dead before that is paid off!  i actually "came to" after a rough time and found that i had MAXED OUT a 2 million dollar policy.  i also lost my job and, to my surprise, a social worker had arranged for me to receive ssi.  humbling, very, very humbling.  i really was a "prof-de-rien"!  anyway, i made the offer of $20/month, they accepted with the proviso that i pay it through their collection attorney -- if i miss one, or it is late [that has happened.  i just forgot.], the deal can be called off.  like i said, though, i think my death will precede the demise of these payments! 

helpless 24,  i am suffering and clueless, too.  we all choose our own way to deal with it.  haven't you noticed what a fantastic mix of survivors are with you?  some champion their health as pioneers -- because they have to, because they are leading the doctors and not the other way around.  some refuse all suggestion of the role psyche plays in sickness [or anything], fearing a label of "crazy." some of us are crazy! [joking]  some who are ill themselves are natural healers, gentle spirits. 

i am not afraid to talk to you.  i don't know that i can give you anything at all.  don't forget that this is a virtual world!  i have to remind myself about that almost daily.  turn first to your actual, real  world and resources. 

so... how is your health?  how is the inner you?  how can we help?  there are lots of people who have read and will read your post.  you are not forgotten. 

well, i have spewed once again.  "to spew" -- one of my favorite verbs! 

take care, 

prof-de-rien