I could use some support: fibromyalgia and OCD.

[Ladyhawk]

Obviously I'm not asking for medical advice...just moral support.

I was recently diagnosed with fibromyalgia. I've been hurting a lot and sleeping a lot. I've also noticed some OCD symptoms popping up. When I walk anywhere in my apartment or down / up the stairs, I find myself counting my steps. This is a bit disturbing because up until now I mostly had problems controlling rumination. This seems like an expansion of symptoms and my counselor is out of town. D'OH! I can always pop into the clinic if I think things are getting out of hand.

I've been feeling rather depressed about the extreme fatigue, sleepiness and pain. I feel like I'm sleeping my life away. I'm also upset because I'm losing hope that I'll ever conquer these health problems and lead a normal life. One of my doctors said I might as well apply for Medicare. It seemed like a dismissal of the idea I could possibly get better. It upset me. It's close to impossible for me to live on disability.

I'm pissed off because the system is designed to make me fail. I'm either disabled or well enough to work full time. There doesn't seem to be an in-between, a way of helping me be productive according to what I can do. I'd love to have a part time job, but I don't see how that's possible, either financially or physically since my conditions are chronic. I don't see a way of putting aside money for "retirement" because I'm permanently "retired"--except for the fact that being chronically ill is a full time job.

I've been diagnosed with diabetes, fibromyalgia, degenerative disc disease, treatment-resistant depression, post-traumatic stress disorder and obsessive compulsive disorder. For awhile my counselor threw around the Asperger's label, but I don't think it applies to me very well. :shrug: I'm mostly anti-social because people have done a wonderful job of teaching me not to trust them. Anonymity is my friend, I guess. :shrug:

[flvegan]

1. I've got a friend with fibro, and I've done a LOT of reading on it.

I hope you can get past the crap you're dealing with, especially compounded with OCD.

From what I've read, there are a couple turns you can take that a doctor might not mention. You won't like either one, I don't think, but I'll be happy to share them if you want.

Regardless, I hope you find a happy medium amongst all...well, all of THIS.

[marzipanni]

15. I have been reading about Guaifenesin therapy

as described in this article- http://www.med.ucla.edu/modules/wfsection/article.php?articleid=141
Is this one of the options you mention?
I was a nurse before I injured my lower back (now big hosptals hire teams of fit young men to do the lifting of patients!)
Anyway, I'm still very interested in health related stuff, especially therapies not discovered by huge pharmaceutical companies.

[HarukaTheTrophyWife]

17. Guaifenesin helped my friend out.

He spent a couple years being pretty much crippled. Walking with a cane, on disability etc. That's the only medication that seemed to help him out. Now he doesn't need a cane and is able to work overtime managing at the Borders.

[knitter4democracy]

2. Damn. That's a lot to deal with.

I know pain, and it sucks. I had chronic pain for ten years, daily and constant for the last year and a half of it. It mostly stopped when they did surgery to find the endometriosis lesions and see if they could take care of things only to find that it was my appendix all along.

Because of that freakin' appendix, though, I had all these other symptoms that are starting to clear up (some aren't, though, so I'm getting those checked). Being chronically ill is a full time job, what with all the specialists, journaling, and just getting around the house and making sure you eat. It really, really sucks.

I'm so sorry that you're going through all that. It sounds just awful. Are you sure the OCD isn't a way to cope with the pain? Sometimes I found myself doing odd things that I don't do anymore, and it really was the pain all along. Pain changes a person.

If you don't mind, I'll pray for you. It might help, and it'll definitely help me send good vibes your way. No one should live in pain like that and be in a quandry as to how to live.

[flamingyouth]

3. Pain sucks

Are you still in physical therapy at that place that had Faux news on all the time? (ugh)

Poor you. I know, people don't understand what it's like. And yeah, being chronically ill is somewhat like a full-time job. :(
:hug:

[txwhitedove]

4. Oh, Ladyhawk, I'm so sorry to hear of your health poblems.

You are seeing a doctor and hopefully he will help you get comfort as well as guide you through the options for your future. As for the OCD and counting issue, don't fret about that. I found myself counting during times of extreme mental/emotional stress, throughoout the day, steps, minutes, repetitive processes. Is it stress/depression causing you to sleep so much, or the illness?

:hug:

[Ladyhawk]

9. I'm not sure what's causing the extra sleep.

It might even be some of the new pain drugs.

I forgot to mention I also have sleep apnea and wear a CPAP (continuous positive airway pressure) so I won't stop breathing at night. My doctor is supposed to order a titration study to see if the pressure needs to be increased. Sleep disorders--highly correlated with fibromyalgia--may be causing the problem.

[kiraboo]

5. I'm sorry Ladyhawk. You have way more than your share

of burdens. There have been a couple stage in my life where I was overwhelmed by a combination of health problems, clinical depression and a difficult marriage. Some of my health problems - rheumatoid arthritis, GERD, IBS, to name a few, I was told I would have to live with for the rest of my life and I tried to reconcile myself to the thought. The thing is, all my problems have waxed and waned over the years. And while on occasion it has seemed like too much to handle, more often I deal with it very successfully. When traditional medicine failed to help my IBS, I tried self-hypnosis. Against ALL EXPECTATIONS (I'm a huge skeptic) it worked! I mean I went from constant screaming pain for months to no pain over a period of weeks. And I've remained pain free for three years. My point is that, no matter what you're told, you have reason to hope - even to expect - that you will get better in time. Don't give up on yourself and try hard to keep positive. I know it's tough but I also believe you can do it.

[Ladyhawk]

11. Sounds like you've had your own share of problems.

Oh yeah, I also have IBS...goes with the fibromyalgia (along with the sleep disorders).

I am trying. As you probably well know, it's sometimes next to impossible to self-motivate, but I'm trying not to give up. I'm pretty tenacious or I would have given up many years ago. I've started taking supplements that are supposed to help fibromyalgia / chronic fatigue syndrome: evening primrose oil, Omega-3, chondroitan, MSM, glucosamine, mitochondrial support, liquid oxygen, blah blah blah. Like you, I tend to be skeptical, so if I'm trying unproven supplements, you know I'm pretty desperate. :) I'm exercising lightly. I'm eating better. I've been doing all the right things, but I haven't noticed much improvement. I need to take up relaxation tapes again. They seemed to help me stay happier. :shrug:

[Hissyspit]

14. Depression will exacerbate OCD behavior.

Weightlifting was the best thing I ever did for my Chronic Fatique Immune Deficiency Syndrome.

[Ladyhawk]

18. Really? I was diagnosed with CFIDS as a young adult. For the past

ten years I've tried to ignore the diagnosis and pretend there is no such thing as CFS (or CFIDS), chalking it up to the depression. Well, guess what? Fibromyalgia and CFS are so close they may be the same thing. :grr: It looks like it has bounced back on me. I can't ignore the fact that I'm in pain and I'm very, very tired.

Unfortunately, whenever I've started an exercise regimen, whatever part of my body I work on tends to break down. Back in January before the lastest setback, I was lifting weights for my upper body, according to a physical therapist's recommendations. (I was recovering from spinal fusion surgery.) Now my arms are a mess. I have tendonitis in both of them. I decided to stop the weight-lifting.

It's happened with other parts of my body, too. When I tried walking, I developed plantar fasciitis in both feet. When I worked on my upper body, my herniated discs said howdy. I've decided to do non-impact aerobics and concentrate on my body core. I'm doing light stationary bicycle with light weights for my abs and lower back. If my abs and lower back break down I think I might cry.

I'm going to postpone any serious weight-lifting for now. I don't think I'm even strong enough for water aerobics just yet. This time I'm going to listen to my body and try hard not to screw it up. :(

Thanks for the info. I'm VERY glad it worked for you, but apparently I have to find something else that works for me. :D

[mopinko]

6. hang in the lh

it does indeed all, all, all suck. people who have never had to deal with chronic pain have no idea. and doctors, oy. it is one thing to deal with something that is defined, understood, acknowledged, all that. but to have one dx after another, one doc then another, maybe this, maybe that. it sucks the life right out if you, it does.

[wildhorses]

7. sounds like you got a tuff row to hoe, my friend

:hug:

[spindrifter]

8. Hang in there, Ladyhawk!

Like others who have responded, I have a close friend with fibromyalgia. She has good spells and not so good ones. She also has had the issue with work. Now she is working something like 70% time, and that seems to be a good solution for her, though the income is still pretty marginal. Remember, people at DU are here for you.

[Dangerously Amused]

10. Hugs to you!

Please don't lose hope!

My Mom had a recurring type of cancer and had to keep getting treated. Then one day she read about a vitamin regimine endorsed by the American Cancer Society. She decided she had nothing to lose so she tried it. As soon as she began the vitamin regimine the cancer started going into remission, and she has been cancer free for years now. Her doctor is just stunned. Mom also gave the regimine to a friend who developed the same type of cancer... and it "cured" that person as well.

So my point is that doctors don't know everything, and I firmly believe that you have to be your own strongest advocate in navigating the big business of healthcare and pharmaceutical "cures" these days. Remember, the health care industry is a BUSINESS after all... and the top priority of any business is to make money. Not to take a personal interest in you... to make money.

But I take the position that the body's natural ability to heal itself from within, given the proper support, is FAR greater than any doctor's ability to heal it from the outside. I mean, think about it. You get a cut, and a week later - presto! - it's vanished. You body completely healed itself. How cool is that?!?

So anyway my advice is to read, read, READ... everything you can get your hands on about your health conditions and all the latest developments in their treatment, including and especially the natural approaches. I'm not saying I think you should ignore your doctors, but I am saying I that I think it's a bad idea to blindly follow whatever they say.

Good luck! :hug:

[Ladyhawk]

12. I've been aware of the fact I don't trust doctors for quite some time. :)

I'm willing to look into alternative treatments, but I've been shafted by "nutritionists," too. It's easy to make money off desperate people, I'm afraid, even desperate people who are well-educated and skeptical. Poor people's health insurance will only cover treatments that are approved by the FDA. Unfortunately, that rules out treatments that actually work, too...like massage, for example. I'm sure four massages a month would go a long way toward making me feel better, but that would take, at the very least, one-quarter of my gross income. There's no way I could afford it.

So, I'm in an unenviable position. The drug companies want to make money off me. Quacks want to make money off me and my "insurance" won't cover anything that isn't a drug...and even then I've ended up paying for flexeril myself because Medi-Cal won't cover it. They want me to "fail" on other drugs first, but I don't have time to dally around when I have something that seems to help at least a little bit. :shrug:

Thanks for the :hug:...let me :hug: you back.

[roguevalley]

16. sweetie, my cousin has fibro and I have a slight, very slight OCD.

I count too. It drives me nuts but I try and soldier through. Paula goes to work and sucks it up for the fibro and found she feels better when she just moves forward with it. I just think going to a masseuse who is a person who knows alternative techniques is a great idea. Mine is a wizard. Just hang on, honey. I send you hugs. I will now count them ... 1, 2, 3, 4 ... ;)

[pitohui]

13. well you're counting steps because you are sooo tired

i wouldn't necessarily assume you ALSO have OCD, when you have chronic pain and exhaustion, it is natural to count steps, i remember doing the same at the worst points of my two decades of chronic pain -- for that matter, i remember doing the same if i'm at the bitter end of an exhausting hike w. a 40 pound backpack up a steep mountain!

with fibromyalgia you need an unusual amt of sleep if you are ever to recover, a relative at one point was sleeping 22 hours out of day, yes, that means, she was only able to stay awake 2 hours out of 24, needless to say, she lost her job and has never recovered another professional job, but she at least is now able to work at some job (retail), it may be that your body craves the extra sleep if you are ever to recover enough to be quote unquote productive

i would not feel guilty at all about applying for medicaid in your shoes, nor would i feel guilty about getting the sleep i needed

it is easy for doctors to throw around the diagnosis of "depression" if people sleep more than is the norm, but i don't know how you could fairly expect to recover from fibromyalgia if you don't sleep, yes, i know it can be self-limiting but it just seems logical that if you are so tired that the core of your bones hurt, you need to get your rest!

don't blame yourself, you never asked for this


wish i could say something more useful but i really don't know enough

on edit -- i see you mention CPAP and a doctor investigating you for sleep disorders, THIS IS KEY, FOLLOW UP ON THIS, it could make a huge difference for you

[riderinthestorm]

19. Have you tried acupuncture?

I am so sorry that you are at a low point health wise - I really hope you have at least someone close to you who can give you real hugs as well as the virtual ones from DU!

I'm pretty healthy but when I've been laid low by a health issues that a regular doctor couldn't help with, I've had really excellent success with an acupuncturist. Several members of my family have also had success with this treatment option dealing with a variety of things like depression and CFS.

I went in desperation when the nausea from my pregnancy was so out of control and the meds the doctors were giving me weren't doing anything and they were out of suggestions (I was throwing up more than 40 times/day - even water. I lost 20 lbs in the first 6 months of pregnancy!) I skeptically went to the acupuncturist on the recommendation of a friend - I cannot describe the relief I felt during those visits - it was immediate and total. I went twice and although he didn't totally eliminate the nausea in between visits, I was so dramatically improved it was a miracle. I am a complete believer that there is value in this type of therapy in certain cases.

It's not for everyone but since Chinese medicine focuses on treating the whole body instead of targeting one symptom at a time, you may find relief with someone who is evaluating all of your issues together. The guy I've seen studied in China for 5 years!