I've been in a lot of pain lately: fibromyalgia, I think.

[Ladyhawk]

OK, I hope this doesn't get interpreted as asking for medical advice. It's mostly a rant, I guess.

I don't use this emoticon often, but here goes: :rant:

I already have a doctor. He's really good when I ask him to give me a prescription, but if I ask about anything that he doesn't have a ready-made answer (pill), he is impossible. My physical therapists have been equally worthless.

For the last month, I have been struggling with a lot of neck pain. It's been almost a year since my surgery and suddenly I'm in constant pain. It's mostly skeletal / muscular, I think, and not nerve pain, so I guess that's better even though it hurts like hell. I've also developed tennis elbow.

In the past I've been diagnosed with fibromyalgia, but other things seemed more pressing so I ignored the diagnosis and pretty much blew it off as a "trash bin" diagnosis for people who have chronic pain the practitioner can't or doesn't want to treat. After realizing my whole body hurt, I did some research and found this page: http://um-jmh.org/body.cfm?id=1554 . Every one of the pain pressure points is on fire, with the exception of my knees. I have a sleep disorder, fatigue, depression, irritable bowel problems. Of course, that could describe a lot of things, but I hurt and I'm stumped.

I live in a fundy area devoid of good medical care. I have tried so hard to find a decent doctor who could help me with some of these issues, but I keep striking out. A couple of years ago, I found a PA who was doing good work, but the clinic kicked me out and told me to find help elsewhere. I am so tired of looking for a decent doctor. I am tired of being jerked around by the health care system.

Maybe this is allowed: How the hell does someone with Medi-Cal (poor people's insurance...in other words, piss poor insurance), pain and fatigue find a decent doctor????

/end of rant

[crispini]

1. Pain management is something that western medicine doesn't do well.

See if you can find an acupuncturist. You'll probably have to pay for it yourself, 'cause even my employer sponsored insurance doesn't pay for alternative treatments, but believe you me, if it gives you the kind of pain relief it gave me, it's well worth it. Good luck. :hug:

[Ladyhawk]

9. Just can't afford it. :(

Medi-Cal won't pay for massage, acupuncture, etc. I'm on disability and gross $812 a month. After paying rent and other necessary bills, I barely have enough to purchase groceries. Actually, I don't have enough to purchase groceries. My family has to help me with expenses. They wouldn't / couldn't foot the bill for acupuncture. It's too expensive.

About three weeks ago I was in such misery, I had to get two massages within a week. It cost me $100, about an eighth of my gross monthly income. If family hadn't helped I don't know what I would have done. At the same time, my family drives me crazy. I love them, but they...well, they're fundies and far right-wingers. My mother will act normal for a long time, then suddenly pull some bizarre stunt that leaves me reeling. She once harbored a convict breaking parole. She once called my counselor and told him I was demon-possessed. When I cut off relations after a major incident, she tried to have me committed to a mental institution. There's much more, but Jesus, I think that explains enough, don't you? :) My brother is an Ayn Rand Objectivist. He's heavily into greed and being cruel to those who can't fight back. It's one hell of a conundrum and I have no clue what I'm going to do. Every time I try to break out, I run into some huge obstacle. This pain is the latest, but by no means new...just more intense. I am trying to tell myself to buck up and find an answer, but I'm just so damn frustrated.

[XanaDUer]

2. Oh, Ladyhawk

:hug:

[Ladyhawk]

26. Backatcha

:hug:

I really shouldn't be typing this much, but I appreciate all the sympathy and ideas. :P

:yourock:

[Deja Q]

3. I hear you totally.

I had a similar surgery.

And the last few months have been more difficult for me as well. Though our depression could be caused via other means...

I've been trying herbal remedies; kava kava and valarian root - the latter for sleep aid, the former as a muscle relaxant. And having some slight success (it's only been 3 days...) The elliptical trainer has helped, as does slowly weight training.

Note on kava kava, read the usage instructions carefully and do not go above what the directions say. Ever. Overuse will lead to nasty liver problems or induce muscle weakness. (I use it every other day...)

But valerian, good for sleeping, is a daily event. and I have felt refreshed when waking up.

[flamingyouth]

4. Can you get into a pain clinic, by chance?

Do you have one near you, and will Medi-Cal pay for it? I recently started going to one after two decades of chronic pain and am finally getting some relief (slowly but surely). I go to the one at Swedish Medical Center here, where my neurologist & PT are, and they also have people offering biofeedback & relaxation therapy, etc.

It sucks. Pain can drive a person insane, make you angry, exhausted, totally change your personality, and suck any enjoyment out of life. I FEEL FOR YOU, LADYHAWK. :hug::hug:

[khashka]

5. At the risk of shutting down this thread

You need a neurologist.

You will probably have to fight for a referral. If you are refused go directly to the top person. It does work.


Also be a total bitch : words like "malpractice" or "negligence" work wonders. No, seriously. Did it myself. Couldn't get a ref to a neurologist.
My gold card doc (TX speak for MediCal) told me his job was just to keep me from dieing in the street. If I ended up in a wheel chair, he might consider a referral. I called his supervisor and threatened a malpractice lawsuit. In five minutes I had an appointment with a neurologist.


Ya gotta fight! It's your health and your body! No holds barred. Whatever it takes.


Khash.

[Deja Q]

6. Seconded.

I concur with Khash. Entirely and utterly. (about seeing a neurologist; Not risking the kybosh on this thread!)

:hug: to you, LH.

[Ladyhawk]

21. I used the word "lawyer" and finally got In Home Supportive Services

when I was facing my surgery. I asked for a written denial so I could take it to my lawyer. LOL...I don't have a lawyer, but I'd tried for years to get help and that's the only thing that worked. Tuesday I'm being re-evaluated. I still can't do very much, but I doubt they'll continue services for me. I'm not sure how to feel about this because there are so many who need it much worse than I do and budget cuts are making everyone suffer. I guess I just answered my own question. I'll tell them I'm better, but still can't do certain things for myself (true-ish, although the last month has been much worse). They'll probably decide others need it more and they'll be right.

It's a damn shame that killing people in the Middle East has become more important than taking care of our own citizens. The Republicans let New Orleans drown in their own waste, left them to rot in the Super Dome. Our own citizens still aren't getting the help they need just to survive, so why should I be surprised I can't get decent medical care? Katrina was a horrible lesson to me: Republicans don't care about other people. If they'll let people die in their attics and not collect the bodies for six months, why should they worry about whether or not I can find a doctor to ease my pain?

This nation has become so callous. I hate it. I can't stand all those saccharine-sweet pseudo Christians who vote Republican and approve of the war and letting our own citizens die. Sorry...I'm just musing about the citizens of my community. I ran out of groceries today and went to a local greasy spoon. (Grocery shopping is a bit hard on me still, although I could probably do it in a few days if things calm down.) The waitresses there strike me as fundy: fake Christians. I don't know why. For some reason it made me particularly uncomfortable today. Again, I don't know why.

[Flaxbee]

7. fibromyalgia is nothing to blow off...as you know

my mom has it, with a host of other pain/discomfort problems; she lives in Boise, Idaho and her doctors are terrific (and she's on M'care/M'aid). The doctors in California were not that helpful, Cal. is just so huge and overwhelmed it is hard to get anyone's attention.

However, I know that the only thing that even gets close to managing her pain is a patch that she wears on the back of her arm and changes every three days.

A pain clinic would be a good idea, if you can find one.

Another friend of mine went the acupuncture/acupressure route and found relief that way. I guess, do whatever you need to do to get to see other doctors in a variety of fields.

I'm sorry you hurt so much. I do know from my mom's experience how awful it can be.

[graywarrior]

8. I stopped eating any flour products, rice cakes, anything that

causes dryness. Amazing...no pain.

[0007]

10. I don't have any answers for you Ladyhawk, but I'm pulling for

you and know exactly how you feel. I'm so exhausted of strength and energy I hardly have enough time for Diego anymore.

[khashka]

11. LadyHawk...

ask around. Take out the Yellow Pages and start calling.

There is no reason you should be in pain. You need a pain management doctor. Many have a sliding scale - you pay what you can afford. The good ones ain't dumb - they know chronic pain can make it difficult to earn a good or steady living. And if they do a good job you can pay them more :evilgrin:


Also try acupunture. My friend Kelle has fibromyalgia - and she says acupuncture totally changed her life. Once again, call around.

Good luck and :hug:


Khash.

[u4ic]

12. Gentle hugs, Ladyhawk

I have it, too.

Acupuncture helped me tremendously. I went from being housebound (I have CFIDS as well)to being able to participate more in life (going out 3-4x week; a few hours each time). I still can't exercise, or work, but it's a heck of a lot better than where I was. I can pretty much take care of myself now...before, I needed a lot of help. (one difference, however, is that acupuncture in a physio clinic here is covered, so I don't have to pay. I'm very, very fortunate in that way)

Chiropractic manipulations have also helped me (I know when I need to go for an adjustment, once a month; I can read when my body needs it)My pain diminishes a lot when I'm back in alignment, as does my balance problems, sleep and foggy thinking.

A couple other things I found helpful...as graywarrior mentioned...eliminating a few products (wheat and gluten, dairy, soy, yeast, corn) then slowly reintroduced them. I found I could not tolerate gluten, yeast and dairy, and have felt better off them. Some people find that nightshade veggies (peppers, potatoes, tomatoes, eggplant) also cause pain.

B12 shots that I administer myself, and d-ribose (a supplement) have also been incredibly helpful.

I understand the frustration of having so little money to live on...I do sympathize, I'm in the same boat...if it wasn't for the health care system here, I wouldn't have the improvements. :hug:

[Patiod]

13. Maybe a Neuro, maybe a rheumatologist

Many Rheums are really really understanding of fibromyalgia - they know that when someone has fibromyalgia, their body is screwed up the way it is with their rheumatoid arthritis patients. They don't tend to think of fibromyalgia patients as cranks - they see it as an autoimmune disease rather than a "garbage can diagnosis" (I've heard docs use that term)

There are a lot of new meds being developed, and someone who is up on the clinical research being done in the field might be able to get you into a study, where you would get medication and treatment for free. One problem - even though a lot of these new meds under development may work for fibromyalgia, a lot of the trials won't allow fibromyalgia patients into them - they actually EXCLUDE them because the disease is so tough to treat, and they don't want to bring down their success rate.

Having said that, see if you can get a referral to a rheumatologist....

[Ladyhawk]

17. Thanks. I know someone whose wife has RA.

He's a good friend, but he's hard to track down. He works in the health care profession and knows a lot of folks. The problem is getting him to respond. He tends to forget stuff. :)

I went to prompt care today and the doctor gave me the standard run-around. Quote: "There isn't much I can do for you."

He did order an "inflammation" panel, but when I've had these same symptoms, the panels have always come back negative and I don't expect a different outcome. I suppose that's good since I really don't want rheumatoid arthritis. However, it makes treating whatever this is a real bitch.

All the doctor could do was recommend what I'm already doing: muscle relaxants, ibuprofen, ice, heat, etc. He gave me an Ace bandage and sent me home, telling me to follow up with my doctor (who is out of town). It felt like he put a band-aid on my owie.

Frustrating.

I tried not to get too angry with the prompt care doctor. I guess he really isn't set up to refer me to someone who might have better ideas.

I am NOT looking forward to going to my primary care physician. Unless my complaint is diabetes-related, he doesn't tend to listen to me. He doesn't refer me. He won't look things up. I asked about lighting for Seasonal Affective Disorder in case it was part of what exacerbates my Depression and all he would say is, "I don't know anything about that." Geez. I tried twice to get him to look into it, but he wouldn't. I'm sure he'll have the same response when I describe chronic pain that doesn't seem to have a concrete cause. :eyes: Jesus, I hate doctors. (Sorry, I know there are probably some good ones...just haven't come across any. :shrug:)

[riona]

14. fibromyalgia

i have a friend with this. she has good insurance, but hasn't found anything really helpful. she responded a little bit with acupuncture, but hasn't been with it too long to tell for sure. i get rants from her periodically and i don't blame her. who wants to be in pain almost all the time? one person i know did well with botox for a neck problem.

[DawgHouse]

15. I have it too

The doctor to see for this is a rheumatologist. I still meet doctors from time to time who tell me they "don't believe in fibromyalgia."

I can suggest a support link that is good source of help: www.fibrohugs.com.

And another thing that may help you is to pick up the book Triple Whammy Cure. This book has some good self help advice for fibro. www.triplewhammycure.com.

I hope you feel better soon!

[yellowdogintexas]

16. Whan I have a flare up I take seriously hot baths with bath salts

brand name "BathTherapy"..not a long term cure or anything but nice for arresting symptoms in a flare up.

[Ladyhawk]

18. Thanks.

I think part of the problem is the weather. It snowed two nights in a row here at a very low elevation. We don't get snow that often this low. My mother, up the hill a way, got eighteen inches.

It's beautiful, but I think it's fucking me up a little. :)

Once problem is I need to clean my tub and can't do it in my current state. Sucks, eh? I guess I could go to the gym and take a dip in the hot tub if nothing else.

I tried keeping up with my physical therapy exercises, only to find that exercising made me worse. Even stretching makes it worse.

When my mind is clearer, I really need to think this through. I have to find relief I can afford. Right now that sounds impossible, but I'm going to try not to worry about it right this minute.

Ugh.

[Lorien]

20. Electrolyte deficiency is causing the workout pain

I feel like I've been hit by a truck when I don't sip my electrolyte mix throughout my workouts-and I can't get up the next day, either. My aunt has fibro too and she turned me on to the sugar free mixes (made by the "emergen-C" company). It really, really helps.

Hot tubs and massages can help too, as they stimulate the lymphatic system. Saunas can also be beneficial (but who has the $$$)?

[yellowdogintexas]

29. I am definitely worse in really cold weather. Or if I have to sit

in a really chilly room, (such as most office buildings in Texas) and can't move around much.
Funny thing, when I was in Yellowstone last September and it was much colder than I am accustomed to, but I did fine. I think because during the day, we were walking, and getting in and out of the car, and the car had heated seats, which really helped me out.

I had a flare up about a month later, and was miserable for 3 weeks. Stress doesn't help it either.

Keep the faith, we will figure a way around this

[Ladyhawk]

25. Thanks, DawgHouse.

You guys are giving me some ideas.

I may put some pressure on Dr. "I Don't Know Anything About That" to send me to a specialist. I'll try a rheumatologist first if he'll let me. Probably the panel will come back negative (again) and I'll have to mention lawyers (again).

[Lorien]

19. I have a lot of experience with this; diagnosed at 16 when almost no one

had heard of it (I'm 40 now). I've been through every treatment imaginable. What works for me; MSM, SAM-e and glucosimine/ condroitan supplements, reduce sugar intake to near zero (no fruit juice or corn syrup either) reduce carbs, try to cut out processed foods as much as possible,increase protein/veggies. Cross training is a must; NON-IMPACT aerobic activity and weight training (drink a sugar free electrolyte mix while you work out-otherwise you're in for a world of hurt). Good sleep is also important; use melotonin or Ambien if it's really bad.

Just my .02. It CAN be controlled with a little work.

[Ladyhawk]

24. Wow, thanks.

I stopped taking the MSM, chondroitan (or however you spell it), glucosomine, etc. because I was having irritable bowel issues and was afraid all the vitamins / supplements were contributing to the problem. I'll give it another go. I'm diabetic, so I don't eat sugar anyway. I had some at the weekend workshop, so that may have contributed to this flare-up. (As I mentioned, the snowstorms haven't helped, either.)

I stopped working out when the pain got worse, but I'll give it another go with some electrolytes and see if that helps. I stopped weight training, too. Ugh. :(

I sleep with a CPAP because I have sleep apnea. Perhaps there are other sleep disorders the clinic didn't diagnose. I didn't sleep well the first time I was at the sleep study center and the stupid doctor based a diagnosis on the results anyway. I never made it to REM or deep sleep, yet he concluded my depression was making me a hypochondriac even though the pulse-ox test had shown I stopped breathing some 78 times during the night.

My friend in health care blew a gasket and had it out with the "doctor." Another sleep study was ordered. I was only there long enough for the staff to figure out that I did indeed have sleep apnea. They fit me with a mask, tweaked it briefly, then disconnected all the electrodes. I have a feeling they didn't study all the stages of sleep. They just wanted me out the door. There was ZERO follow-up. I finally had to contact a third party. My mask is falling apart. I've had to super-glue it in three places during the past month and who knows how filthy the filter is by now...geez. Meanwhile I'm waiting for Medi-Cal to approve ordering replacement parts for the damn thing. I was surprised to find that sleep orders and fibromyalgia go together like rama-lama-lama-ka-dingety-ding-de-dong.

I take seroquel at night. It's a mood stabilizer, but it helps me sleep.

Trying to get basic health care has been one struggle after another. I stopped expecting much a long time ago. In fact, I expect doctors to be assholes and the system to be impossible. I had to wait six months for my first MRI and over a year for the second one, even though the first one showed problems. I stopped keeping track of all the crappy things the health care system and doctors have done to me. It's par for the course. Most people don't know how broken the system is until they develop chronic or serious health issues.

[Lorien]

22. It seems like I've killed yet another one of your threads

sorry about that.

:shrug:

[Ladyhawk]

23. It says it's not dead. It doesn't want to go on the cart. :) n/t

[XemaSab]

27. I hear ya on that

I don't really want to go into my YEARS of struggle with fibro-like symptoms and odd medical happenings, but just know that you're not alone in the frustration of this. :hug:

[Patiod]

28. "doctors" does not equal "health care system"

Many of the docs I talk to every day at work are as frustrated as you are with our broken health care system - one older specialist in Appalachia whose patients were primarily Medicare patients expressed his frustration, and then said "well that 'Hilliarycare' everybody was so afraid of isn't lookin' so bad these days, is it?"

I wouldn't give up on doctors yet -- they are in very early days of understanding about the roles and inter-relationships of dopamine, seratonin, norepherine, inflammation, and sleep in a whole host of illnesses.

At work recently, I've been talking to many specialties about many different disorders and drugs (all for different drug companies with different goals), and taking it all together, it seems that we're sitting on the verge of some breakthroughs in understanding which may lead to new treatments for depression, mood disorders, sleep disorders, parkinson's, MS and a whole host of bizarre pain disorders (fibromyalgia, neuropathic pain and reflex sympathetic dystrophy syndrome). Pain Specialists and rheumatologists seem to be on the leading edge here, but there are also psychiatrists, neurologists and sleep specialists who seem to "get it".

If you're not already dong so, you may want to keep an eye out for any clinical studies being conducted by docs in your geographic area. The upside: free drugs and treatment. The downside: if it works, they may take you off of it when the study is over (a whole 'nother issue for a whole 'nother thread).

http://fmaware.org/clinicaltrials.htm

In the meantime, folks like Lorien (and a friend of mine from my church) have found some relief with diet, supplements and careful exercise and rest. It sounds like you've tried just about everything, though!

Interesting link about the sleep disorder/fibro link:
http://www.nfra.net/fibromyalgia-syndrome-dr-andrewholman.htm