Need hugs, depressing doctor appointment

[susiestar]

I saw the doctor I love today, my rheumy. We talked about the humira not working. He said that while the inflammation DID go down some, it is not worth it as the pain did not decrease. Says most of the pain and problems are the fibro. (DUH!) He really hoped that the arthritis was causing a lot of the problems because there is more they can do for that.

He says that we are really doing what we can at this point. He did add propranolol LA back for the migraines. Lyrica was controlling them, but is not doing such a great job of it anymore. Propranolol is the medication that used to help, then I maxed out the dose, then tried the other medications, then went back to, then maxed, then...

And we increased the pain patches dose (not hte topical patches, but the systemic ones).

I am just down because I hate all this. I try and research and try and ..... and it never really helps much or for long.

Thanks for the vent and the hugs. I am really down about this. Thank Heavens for the prozac, otherwise I would REALLY be in bad shape.

doctor DID mention seeing a pain doctor. But was not at all surprised that I have been rejected as a patient by every pain clinic in my STATE. More than once. heck, it took incredible effort just to get a pain doctor to agree to do the steroid shot that was a required step before I could have the neck surgery. And that doctor made SURE I knew that he would NEVER take over my care for the other stuff.

My doctor said that this is actually something he hears a LOT. Apparently pain docs can really pick and choose their patients.

Sigh.

Susie

 

[Lothlorien]

Keep your ears and eyes out for chronic pain research trials. Perhaps you can get into something like that. I hope things get better. Living with pain on a daily basis can really drag you down. Though it's hard, try to do a little exercise and/or stretching every day. Don't get yourself into the same trap that my Aunt got herself into. She refused to do any exercise or stretching and now she's in worse pain, because her muscles have atrophied and she's really obese on top of it. She's on liquid morphine now and just had surgery, which may help for a short time, but is probably not going to cure her. Try to stay as active as you can, even if it's just some simple stretching exercises each day.

Sending hugs.

 

[Hound dog]

Susie

Sending huge ((((hugs)))) your way. I know it must be frustrating at best.

I like Loth's suggestion, I'd search for some research trials to get into and see if maybe you could find something that helps that way.

 

[everywoman]

Sending a hug from one fellow pain sufferer to another. The daily grind on my knees is taking its toil. 24 more days of school and then I'll soak in the pool all summer. That's the best relief in the world. Have you tried water therapy? Massage? Both do wonders for me.

 

[DammitJanet]

Susie...I so feel for you. I am having a really defeated period right now myself. My pain is at an all time high and I am going to have to talk to my doctor on thursday about doing something more to attempt to manage it. I know part of my problem is that everyone expects me to be super woman and be able to do everything around the house when I simply cannot do it. They do a lovely job of making me feel guilty when I dont do something. Im expected to be chief cook and bottle washer plus taxi driver and something has to give soon or I am going to break. As it stands right now I can hardly pull myself up to a standing position from the couch and bed or up the few steps to my front door. But no one notices...they just ask whats for dinner...or why I havent cleaned up.

And I only have lorcet for pain!

Sorry for the vent on your vent...lol.

 

[ML]

Susie I am so sorry. Chronic pain is something that only those who have endured it can come close to comprehending it. I pray that something manifests for you. I am visualizing healing as I think of you. Janet, you as well

Many gentle hugs.

ML

 

[Star*]

OH SUZIESTAR!!!!!!

Sending you my biggest hugs - and leme dig here......Okay I got (looks into purse) a pack of gum, a partially open pack of gum, a comb, a ewwww brush (won't send that it has lots of hair in it...actually surprise I have any left to brush), a bobby pin (YES I WEAR SLIPS AND USE BOBBY PINS), I have a date book with no dates lol - glad I wasted a buck on that - a wallet, scads of coupons - if you need any Ensure let me know. I have a ....uh ....that's where those earrings got to, (note to self Dude did NOT pilfer your cheap jewelry apologize mentally and let it go put it in a bubble and blow it away), a no, 2 M&m's not melted, a 10 cent peppermint patti where I had lunch out but stuck to my diet and had a salad that CAME with a mint (dumb). A pen, a calligraphy pen, a gold marker, a barrette. OH say you could use this - it's a tube of Stop Pain spray...I got a sample on that freebie site and love it, a fork, a pair of plyers, some contact lens junk, 1,2 no3, 4 - 5 GOD I have GOT to stop buying dollar store +1.25 reading glasses - if I dug in my purse to find a pair to read the label on the new pair I wouldn't have bought pairs 3,4,& 5. Carmex lip gloss, a fly - yup a real fly. Have no idea but you are welcome to it. OH sand paper (you never know when you're going to hit some rough edges) and........
Turns purse UPSIDE DOWN AND SHAKES.......oh - what the.......hmmmmm I = girl stuff.....leftovers. A bottle of Germ X, Lysol Spray mini, handiwipes, a pack of kleenex, another dag on fly. (musta been a party), pills, Migraine pills, aspirin, a stray vitamin B, OH vitamin C - that's good you should take that (not the one in my purse) but a good vitamin C....oh a rubber band, 3 paper clips, an rubber alligator - i just had to have him to give to a kid when the moment strikes.....a dog biscuit, a package of crackers......and
a bunch of coins - but can I keep those I collect shiny stuff. And that's about it. But you are welcome to anything you see.

Hope you feel better - I'm on year 6 and self-diagnosing myself again - lol. Nothing works - 17 weeks of diet and exercise without a single pound lost or inches lost - and time to go back to the doctor. I did call one at the university today - I found their web site - through USC. Saw where they had an endo. (actually several) called and left my name & # - got a call back from a woman and she asks me "May I ask how long you've had HIV?" and I said WHOTTTTTTTTTTTTTT????? then she said "OH honey I'm sorry you have an STD?" and I nearly choked. And said "WHERE did I call again?" thinking this is that brain fog coming in thick and heavy. Repeated back the number, pulled up the web site and read it verbatim - and she chuckled and said "I don't have any idea why that number is up there."
(deer in the headlights moment for me)
Um - so do you have an endo or NOT? Then she says 'Well I'm sure they do but not through here."

I'm so glad people PAY to go to USC - I bet it was a college kid that set that web site up. Nice. Sigh -

SO back to the PPH list - groan.

I SO UNDERSTAND ALL THIS. Between the insulin resistance, the polycystic ovarian syndrome, the Metabolic Syndrom X, the carpal tunnel, the Raynauds Phenomenon, the vasculitis, pre-diabetic, Migraines, Rheumatoid arthritis, allergies, Rosacea, PMDD, ? Not to mention fused spine - and swollen feet (I look like an elephant) - I"m just so happy to be alive. lol.

Hope you get some relief - migraines stink.

Hugs
Star

 

[totoro]

I sure don't have as much as Star... but I got a hug, Soft Hug.

You know when I was in Tucson, I noticed a ton of Fibro clinics and even huge medical buildings devoted to Fibro. Their is a lot of people who come to places like Tucson due to the heat and dry weather... But I did notice husband who has Ankylosing Spondylisis and Spondylothesis, a degenerative spine, he has it pretty bad for 38. But his pain always decreases when we are in Tucson... it is a form of Arthritis. I wonder if this has something to do with it? The weather, the dryness. All helping, that would explain all of the fibro and arthritis clinics?
Not that that helps you but I was just thinking...
I wonder if the salt therapies that the Polish friends of ours swear by would help? They just ran an article about the salt baths in Chicago, and husband has had friends that have done this for years, but in the article they talked about how it helped with different forms of arthritis, fibro, even depression.
They got the salts from places like the dead sea... it sounded very relaxing.
Of course they are all probably only in Chicago!!!
I hope you get some pain relief soon.

 

[nvts]

Sue! I'm so sorry to hear this! This illness truly svcks!

Have you tried acupuncture/acupressure? I had a friend with fibro and periferal nerve pain was making her insane. She tried accupuncture as a dare and is now a devoted pin cushion!

Feel better honey! Make sure you move around, also Make sure that you check into filing a claim for SSDI. You would definately meet the criteria!

Beth

 

[gcvmom]

Wish I had some quick and easy answers for ya... I'm glad you've got at least one reliable doctor who seems to have your best interests at heart. Maybe he can leverage his contacts and get you in to see a good pain doctor who can finally get you some relief.

{{{{{HUGS}}}}}

 

[flutterbee]

Susie, I'm sorry. Is the doctor thinking the other TNF-blockers (Remicade, Enbrel) aren't worth trying since the Humira didn't work? I know of some people who have found relief with one, but not another. Have you tried the immune suppressing drugs, like methotrexate? You probably have, but just thought I'd throw it out there just in case.

I wish there was more that I could do.

(((hugs)))

 

[Wiped Out]

Susie,
I'm sorry the doctor's visit wasn't more encouraging and that you are in so much pain. Sending many gentle hugs your way.

 

[WhymeMom?]

I am sorry you have found no answers or relief from your pain. Stress and frustration only adds to the problem.....sending strength and peace to you and hoping there is something you can do to make a positive change in your health.......hugs.....

 

[SearchingForRainbows]

Susie,

I just want you to know I'm thinking of you... I hope you feel better soon. WFEN

 

[Shari]

Wow, Sus, I sure wish I knew something to help you or a doctor to send you to.

Sending many hugs.

(And Star's purse is EXACTLY why I don't carry one...so I can offer you a ton oa receipts from my wallet, but that's about it...)

 

[TerryJ2]

Oh, Susie you poor thing.
by the way, I read that remicade was recalled or has horrid side effects or something. I can look it up if you need me to.
Are you getting any sleep? One of the problems with-fibro (you ARE talking about fibromyalgia, right?) is lack of sleep. Not sure which comes first, the chicken or the egg, but either way you've got to get lots of sleep. Water therapy/aerobics is a great idea, too.
I have a friend with-rhematoid arthritis, by the way, and she sees a chiro and has good results.
Wish I had something else to offer.
Star, ROFL! I'm not in chronic pain but I do have a terrible cold and you gave my spirits a lift.

 

[gcvmom]

... I read that remicade was recalled or has horrid side effects or something...

While it can have serious side effects in some people (including allergic reaction, Steven's Johnson Syndrome, and a rare form of lymphoma), Remicade has not been recalled.

 

[Star*]

SusieStar -

I FOUND IT - (it was left in another purse)

It's a bottle of Damnitol -

It's like Tylenol but allows you just not to care at all.

Reminds me of the time I bought a bottle of "HAPPY PILLS" for my former type A personality boss. (remember the putz?) Okay so I buy these (so cute, little smiles on the yellow round pills) and left them on his desk. He came in, took one look, and threw the entire unopened bottle in the trash, grumbled and walked out.

When he came back from whatever miserable moment he had for himself - he walked past my desk where the bottle of Damnitol was sitting. He sneered and pointed - "What are THOSE for?" and I said without looking up "For when you don't take those HAPPY PILLS I left you."

-We never discussed medicine AGAIN. And I KNOW he was laughing on the inside even if he couldn't crack a smile on the outside.

Hope you find some relief somewhere. I'm off to the dentist with a cracked tooth - See? I'm just falling apart.

 

[TerryJ2]

Star, if you're anything in person like you are on the bb, you must be a hoot to work with.
LOVE those pills!

 

[Steely]

Just wanted to send you hugs, and let you know I am sorry.
Hang in there.