[kimthecatlover]

I have real problems with pain from arthritis...sometimes so bad to necessitate cortisone shots in both knees and my right shoulder...and my mental health workers don't seem to take it seriously..they STILL get on my case about keeping things tidy EVEN when I have serious pain and have had shots in my joints...Do they 'push' me because they think I may be exaggerating my pain...or think I'm doing it to 'get out of doing my responsibilities'? I wish they could walk a mile in my shoes(or with arthritis pain for more than one day)! Yes when I am well enough I take care of my place...I don't understand why mental-health workers don't take pain seriously sometimes..am I the only person who deals with this?

[kimmydawn]

i'm so sorry kim. i deal with chronic pain as well and have to take meds to function.

have you asked them those questions? do they visit your home or something? i'm sorry that they do that. maybe you could have your drs speak with them? i think that might help.

i wish you much luck!

kd

[CedarS]

I also deal with chronic pain. In my experience, many mental health workers are not trained to deal effectively and compassionately with those of us who are physically challenged.

Some truly do believe that it is -all in their head-, some believe that we are all getting secret emotional pay off for being ill. Some have not examined their own prejudices and beliefs. Some disdain anyone who says they experience physical pain, we are seen as being needy/weak willed/manipulative.

If a mental health worker that came to my apartment tried to give me a bad time about my housekeeping, I hope I would be able to question their assumptions, and tell them that if they are truly concerned for my well being, that they could jolly well connect me up with chore worker help. They can either put up or shut up.

Ideally all these helper folks, mental health included, would be part of a team with us, they would work with us, not act as if they are our parents/employer/judge of our worth as human beings.

Sarah

[(JD)]

I'm in chronic pain also. I see my Pain and Stress management clinical psychologist 3x week to live with it all.. and to deal with the dummies who don't have a clue about pain! YOUR mental health caregivers are just that: YOURs. Find them information in whatever form they need, to learn how to be on your team! I'm sorry you are having to deal with their ignorance... yes, ppl need to stay positive and help motivate us, but if you don't have the understanding to begin with that they DO understand... it only adds to the frustration, imo. TC

[Periwinkle]

Hi!

I hope you don't mind me asking, but what kind of Doctors do you see? I suffer from carpal tunnel in both wrists, degenertaive disc disease and arthrtis in my neck. I was diagnosed with these things by a neurologist who then told my husband that my pain was all psychosomatic? I went to physical therapy for ten visits and then I was done. Nothing helps. Not even massages. I never went back to her. Not sure who to see.

Thank you.

Periwinkle Blue

[kimmydawn]

my dr had to refer me to a pain management specilist to prescribe me long term narcotic. it's a mild one and i've never graduated in 5 yrs. it helps so much.

i wish you well. mention this to dr?

gl!

kd

[CedarS]

I was diagnosed by a general practioner with fibromyalgia, then sent to a rheumatologist. The rheumy was sort of a jerk but he did discover some other health problems I have. Several meds tried, nothing really helped.

I met with a MD who also used various alternative treatments, he told me that in all honesty he hadn't found anything yet that truly helped his clients with this, he had found that acupuncture did not help, and that several herbs usually suggested for immune system stuff, such as echinacea, was actually making clients feel worse. He was honest enough to tell me when he did not know the answers, I appreciated that.

Years later back with a general practioner, I was referred to physical therapy, did a few weeks of that. Of everything, the heat treatments felt really really good, but they provided say only a half hour or so after treatment of relief. A half hour though can be a god send, any relief from pain is wonderful and a blessing.

I also read read read everything I can find on chronic pain, on living well with illness. I've carved out my own coping skills. My current physician has praised me for this, says it is what folks with these types of chronic illnesses have to do, learn how to self-manage.

I say I read everything but actually I am now quite selective, I know what type of information does not help me, and have learned to politely say No Thanks if someone tries to push it at me.

Low dose Flexeril helps me sleep. I use lots of heat and cold treatments. I do relaxation exercises. I work to speak to myself in my mind in a caring, compassionate fashion. I participate in this self help group: http://www.cfidsselfhelp.org/

For the challenges you list, might be helpful to get current books on them, also join any interesting useful support/information groups here online.

Have you found anything yet that at least takes the edge off? That is my own current goal, the edge being taken off can be such a relief.

Arthritis Foundation

Sarah

[CedarS]

I want to write also about the -it is all in your head- stuff. I lump it together with the advice that doesn't help........-you just need to release anger, you need to eat more protein, you need St. John's Wort, what are you secretly avoiding by manifesting pain?, that isn't a real diagnosis, you just need to get out of the house more, well I get achy too but I don't whine about it, just stop thinking about it-...........etc.

Folks can think whatever about illness, about my illness, about their own, about what it means in the grand scheme of things. I work to not worry about that, not sweat the small stuff. I also work to trust my own experience and instincts. If someone tells me what to do, insists that a certain something will cure me, I certainly do not have to rush out and do that thing, swallow that pill, eat that food, chant that mantra, buy into that philosophy.

I prefer that folks actually ask me first, ask if I am looking for new ideas. Because many times they have no clue how much I or anyone else in this position has researched and tested.

I have to wonder too at the impatience some people display towards those of us who are disabled. It is as if we are somehow less than, weak, yucky, inferior, lazy. Sinners. A waste of space.

Sometimes the best support isn't at all about telling us what we are supposed to do. It is about just being with us, witnessing, asking how they can help. Without prejudice. When we can listen to each other, let each other vent and express, we provide safe space for healing and maybe even some solutions to arise. And sometimes, even often, no miracle happens, but we all get to be human and real with each other.

Sarah

[dottie]

Hi.

Boy can I understand the frustration that chronic pain brings with it. Just about everyone I come in contact with thinks my pain is an abberation.

This really is more than frustration. If only they could walk for one day in our shoes maybe then they would understand.

Even my children think that my disability is in my head. I have Fibromyalgia, Arthitis, Degenerative disc & bone disease. I have to get painful shots into my joints when they freeze up on me..making for horrible pain..and debilitation.

I think some folks just don't want to see. Takes up too much of their time. I dunno. RATS!

~Dottie

[kimthecatlover]

My mental health workers say something about 'liability' if my apartment is not neat as a pin...And I think they got files about my physical problems from another mental-health housing program I was a part of(supervised halfway house/semi-supervised apartments)that FALSELY lead them to believe my arthritis and lung problems come from 'emotional','codependent'and 'psychosomatic' issues..just a bunch of BS. I should tell my physician about these mental health people and sign a release for the doc to send my records...coz it's all there in black and white...

[(JD)]

Well, if you have read much of my personal posts here you know how I feel about all this... but think about it, WHO CARES if THEY think it is all in our heads???? Ok, if I didn't have a head, I probably wouldn't be feeling the pain , I'll give them that. AND who are "they" to think they can divide the body and the mind??? God didn't even do that! How we feel, what we think DOES affect...how we feel and what we think! go figure! We're all connnected.... if they know how to divide it up body only mind only, then they should patent the technique and get rich from it. grrrrrrr

[dexter]

I can relate to this a lot... I also suffer from arthritis. It is not always very bad for me, but at times I can't get out of bed or get dressed because of it.

I think it may be human nature to not understand, maybe as an avoidence tactic because people don't want to deal with the pain of others. Even when mental health isn't an issue. I have a close friend who has suffered severe arthritis much longer than I have, and one of her big complaints is friends and relatives who are caring, want to help, want to understand, seem sympathetic... but then they'll make plans to do something like a shopping trip and if she can't make it, maybe has to cancel the day of because of her arthritis, they get all upset and treat her like she is being selfish. Like the arthritis pain is something to be sympathetic about until it effects something in their lives... gee she can't come out and play with us, it's that arthritis excuse again.

It is infuriating even to me. I don't think I've ever treated her that way even before I fell with arthritis myself. At least I hope not.

With depression it is even worse because it makes us distrust and feel worse about ourselves even more.

Even so, I would hope that a professional would know better, but I guess that isn't always the case either. I think that most of my doctors understand my depression, and my therapist understands my physical ailments and how they effect my life and my depression, so I think I am very lucky in that regard. Friends don't really understand though, most accept the physical problems at least.

[oksomaybeimnuts]

[kimthecatlover]

What really gets me is when I am heavy-duty pain meds for my arthritis and now added to that sciatica..and my staff starts questioning why I need 'all those pain meds' when I am only taking Ultracet and Flexeril, which I take EXACTLY AS PRESCRIBED..they're like OH MY GAWD YOU'LL GET ADDICTED...When I have never had a MICA problem in my life, ever...They say all this stuff about 'holistic healing' and 'mind over matter'...That is really annoying. They are NOT my Medical Doctor...

[dexter]

Kick them really hard in the kneecap and tell them to deal with that holistically.

[dogtanian]

</font><blockquote><div id="quote"><font class="small">Quote:</font>
kimthecatlover said:
I have real problems with pain from arthritis...sometimes so bad to necessitate cortisone shots in both knees and my right shoulder...and my mental health workers don't seem to take it seriously..they STILL get on my case about keeping things tidy EVEN when I have serious pain and have had shots in my joints...Do they 'push' me because they think I may be exaggerating my pain...or think I'm doing it to 'get out of doing my responsibilities'? I wish they could walk a mile in my shoes(or with arthritis pain for more than one day)! Yes when I am well enough I take care of my place...I don't understand why mental-health workers don't take pain seriously sometimes..am I the only person who deals with this?

</div></font></blockquote><font class="post">

no,i have to have cortisone shots in my hips and knees fairly frequently. for months - years - no one picked up on my bad back but now it's led to this and regular physio on my back (which isn't quite aligned now, hence the hip problems). my rheumatologist thinks it was a mixture of mania and the meds that have screwed up my back so completely, but the first time i went to a rheumatologist because i was in pain (my neck was refusing to work, again) the guy said the pain was clearly depression and not rheumatological.

my depression is never manifested as physical pain, nor does that explain my neck actually being unable to move, but it's so hard to argue with doctors

i hope someone listens to you xx

[kimthecatlover]

I recently slipped on some ice outside my condo and severely sprained my wrist and am now in a half-cast and ace bandage....I have Darvocet for pain...when my staff sees the half-cast they are gonna hound me for slipping..that 'mind over matter' thing again, 'You slipped and fell because you weren't careful','You need to watch out with that Darvocet,you might get addicted, isn't Ibuprofen enough?' 'Think pleasant thoughts' 'you use your pain as a crutch' 'wellness, wellness, wellness' 'it's your weight'...yada yada yada. I think as part of staff training they should be required to learn about physical illness NOT from a psych doc but from an MD who specializes in pain control issues!

[CedarS]

Ouchy, hope you get a chance for rest when you need it.

Personally, I think the staff saying those things to you do indeed need proper training -and- they need to hush.

[Rhapsody]

Dear Kim, ((((((( HUGS ))))))))

I do so understand where YOU are coming from and of the extreme pain that you speak of.... for I have been suffering with RA (rheumatoid arthritis) since I was 12 years old - I am almost 39 now. Many people in my own life did not understand at first, not even my husband (well, not until he got diagnosed with regular arthritis about 2 yrs ago) - and now while I may still have many people that do not know personally of the pain I speak of, they know me and know that I would never lie or make up such a thing up.... therefore they give me their unconditional love & support.

LoVe,
Rhapsody -

P.S.
the PAIN is REAL....I have the TEARS to prove IT.... and the days of not being able to move about to back up me and my words.

i work for a 30 year old who picks on me constantly about working slowly. i work slowly for two reasons. one is the pain and the other is to do the work perfectly. she prefers to ***** about the pain and has never complimented me upon one piece of work that i've done there. i have return customers who make allowances for my pain and always insist that they are in no hurry for the work and to "just call when it's ready". she really resents that. i really resent her. she has the social skills of a fly.

i don't think that my family even begins to realize how much pain i'm in...all lthe time. one sister might grasp it somewhat. my doc, who is really a PA, understands and gives me whatever i ask for. but i worked with a doctor in ER who was a complete *** when it came to people being in pain. i hated him! i refused to go in rooms and assist him because i would get so mad over his attitude towards the patients. he skies and secretly i hope he finds himself --- over head someday.......

my ex understood the pain and was solicitious towards me concerning it. he even bought me a goose down bra to wear to keep warm when i fed the cows or hunted with him. it helped a lot. picture it! a pink goose down bra!!!!

i sympathize with anyone who is in pain. i'd crawl over broken beer bottles to help them. xoxoxo pat

[kimthecatlover]

What really makes it hard for me is when I use public transportation, sometimes no one is willing to give up a seat in front for me, even though I carry a Medicare card and get half-fare discounts...when I ask, they'll get up but they get such an attitude about it "Oh you're not disabled, you're fat, that's why your knees hurt...some SOB kid KICKED me in the knee a few years ago, right after I had it drained...people can be so cruel and thoughtless because they don't consider a knee problem a disability...Which would change quick if it happened to them...I wish they could walk a few blocks in my shoes.