Thanks folks who ask us to participate in surveys, may you get important results I want us PPD to ask and answer from our perspective.

[gran5-]

I'll start

How do you (in all seriousness, I can think of many funny responses) deal with the "where is you pain today on a scale of 0 to 10?

[chrismw]

In nursing school I was taught that pain is whatever the patient says it is. For one individual a "4" can be tolerable pain, for another "4" is unbearable. Personally I think the scale is inadequate. A good caring medical person should follow up with additional questions: i.e., "You say your pain is at a "4" is this a tolerable state for you? Would you like something to alleviate your pain? Perhaps we could get you to a "2."

So in a nutshell--if you hurt--tell them. Give a number and then give them your own commentary. "I say my pain is "4" but I would/would not like medication.

[wifeofparky in reply to chrismw]

I agree that the pain scale is not always helpful. I have learned to rate my pain on 'their' scale meaning 10 is intolerable and 0 is no pain so even if I can tolerate a 6 with no meds, I tell them 3-4. We all have different thresholds for pain. Also depending on where the pain is, like in the legs when one is trying to get from point A to point B then what would be a 3 in an arm is a 10 in the legs. I hope I made myself clear.

[gran5-]

chismw, I believe that will be helpful for many if they sign on here and read and come up with questions of their own. I wish us the opportunity to provide answers. I do not anticipate earth shaking insights (wouldn't turn them down) but some small clarification or approach one can relate to would be nice.

[shasha]

I WA IN PAIN LAST NIGHT - WOKE UP AT 3 AM WITH AREAL SHOCKER OF A HEADACHE - AND IBS - I TOOK IBUPROFEN AND PARCETAMOL - NO EFFECT - IT WAS ONLY WHEN I TOOK A DOSE OF MODOPAR THAT I WENT BACK TO SLEEP - SHIULD I BE TAKING EXTRA STUFF THOUGH ?

[wifeofparky in reply to shasha]

I'd talk to your neuro about that. I have a list of meds from our Support Group that PD people should NEVER take. I will have to dig it out and post it here.

[shasha in reply to wifeofparky]

thanks i would be most grateful

[chrismw in reply to shasha]

Hey Shasha--you should also talk with your pharmacist just to rule out drug interactions.

I hope you are feeling better today. You deserve a luxurious nap!

Chris

[shasha in reply to chrismw]

i would but he is french and i dont spaek enough to find out - i colud ask my neuro tho

[shasha in reply to chrismw]

yes i feel pretty shattered actually

[chrismw in reply to shasha]

I'm sorry kiddo, I so hope you feel better. Being ill is awful, when it shatters our rest it's even more so.

Sending you lots of hugs today

Chris

[shasha in reply to chrismw]

TANKS FOR YOUR GOOD WISHES

SORRY I DID NOT SEE IT EARLIER XX

[Hidden in reply to chrismw]

See if this website is helpful: healthtools.aarp.org/drug-i...

[shasha in reply to Hidden]

great site have just registered

[gran5-]

Aarghh. I was hoping that we would diversify to other experiences but here am I almost out of my head with back pain which seems to have steadily built up over the last week or so.. since I have multiple Dxes((fibromyalgia, severe degenarative disc disease, arthritis, scoliosis, blah, blah, blah, enough already)) I wonder if there is some way to hang one pain experience or another on one Dx or another. (For the temporary fix I am headed to the pharm. to pick up lidocaine patches. I am still in the testing phase of the Cannabis plan, found several medibles that work for me but the rest I do not want to try and then drive or some other activity that needs brain function. Later, gator J

[chrismw in reply to gran5-]

Hi gran5, could you clarify a bit more about what your goal is with your post?

Chris

[gran5- in reply to chrismw]

Sure. I have these crashes, falling down the well, don't know what to call them. Many if not most days around 10:30ish I am suddenly drained, exhausted, feeling stiff and my pain # has flown right by 10. The best response is to lie down and nap for an hour - 1 1/2 hours. Not always possible so I slog on. If I am driving I pull over, absolutely. If I'm trying to do something, even wash dishes I am doing it with weights attached to my hands and something pounding on my back, ouch. This sometimes occurs other times but consistantly in the AM. if no one with PD has this experience that gives me(us) info.

Another ?? is it PD. get food stuck in my throat, any food. It can happen with mash. I've had all the xrays mris etc with neg results. Sometimes it is so stuck that it hurts. Again do others with PD experience this??

My guess is that we all have "stuff" that we have ??? about.

Thanks, Chris for the good wishes. As you may gather I'm a fighter who does not accept that there is nothing to be done.

[chrismw in reply to gran5-]

ps--feel better soon!

[Hidden]

Hi gran5, i can relate to the 10.30 crash but mines in the PM and the sudden overwhelming fatigue stiffness and pain,they seem to descend like a task force,all at once,get worse if ignored,but mine is at the end of the day when my dopy tank has run dry and I should have surrendered but have not will not.Rest is bliss but I still fight it and throw in the towel only when Im ready,rather suffer a bit more than surrender .My meds last reasonably well until then .What do you take in the morning doesnt sound like it works great or does it work to well and knock you out.Sounds like a steamroller would struggle to flatten you,my mentallity to, but accept each to there own.

[shasha in reply to Hidden]

morning pp xx

[chrismw in reply to Hidden]

I get the crash in the late afternoon/early evening. Unfortunately this around the time my daughter is home from school. So unfair to her that Mom is in a crabby exhausted slump! Anyway, at first I tried to fight through it (I still do it somewhat). But now I try to arrange my day so that when the crash approaches my tasks are pretty much done for the day. Emma (my daughter) is beginning to understand. She's six. She has made adjustments to her schedule she informed me. Instead of playing after school, she's going to make us snacks and we can snuggle and watch some tv! She's a joy!!

[Hidden]

Chris you daughter seems precious. I am sure she is a joy and a gift you love. Kind of reminds me of my sweet granddaughter.

[chrismw in reply to Hidden]

I feel like I am bragging--but she is so wonderful to me and her own person is such a delightful being. I know it's cliche, but I never knew love like this. It's a tender tiger. . .

[gran5-]

Chris, you did something right!! I'm (not happy) pleased to see that there is some one to suffer with Gotta go now, back later to inquire some more.

[gran5- in reply to gran5-]

I meant re: your daughter, when I reread my post it sounded as tho' I was saying you did something to acquire crashes!!

[chrismw]

Another thing related to crashing---maybe I wait too long to rest, but I find I don't really recover until the next morning. I'm able to function, but I really can't do any real tasks such as vacuuming or walking the dogs. On the bright side it does free up mommy time as well as creative artsy blocks of time!

Are you able to recover? Is a nap enough down time?

[chrismw]

Gran5 and all--I do want to add some insight that we all probably have but may ignore--accepting that these crashes are going to happen and making allowances for them has kind of freed me. I have cut myself some slack so to speak. . .far from lazy (I hope) I have become better at time management and prioritizing . . .are vacuumed floors really going to improve my quality of life? No--but resting on the sofa and visiting with my daughter may.

[Hidden]

Mine have been gone for most of this century (sounds like a long time, feels like a long time).

We don't remember the dirty dishes, mess while I tried to sew for them, toys needing to be picked up...

We remember and talk about times spent together. You are on the right track!

[gran5-]

Thanks for the responses. At this point I'm trying to clarify the mud puddle that is PD symptoms. Perhaps we could start another blog to share coping techniques. Having been Dxed with Fibro for 30 years I've collected a trash bag full of approaches, and some work for one person and not another. Maybe the additional different Dxes cause different responses. LOL I somehow typed spouses instead of responses ..Must have been spell check. Reading the sentence with spouses has me still giggling.

[chrismw]

good idea--i relate to the spouses slip up!

[gran5-]

Tis is an interesting river we are all swimming in. hope someone can make something of it. My perception Someone posts and someone(S) respond. it goes for a while and then it sprouts a branch which some follow. At tis point it took me quite some time ti find my way back so I could read the comments made to the original topic or one of the branches. Is that what admin is there for? Gotta lie down , hope ican find my way back again:0)