I'm Sick and Tired of Being Sick and Tired (Full Version)

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lovingpet -> I'm Sick and Tired of Being Sick and Tired (1/15/2010 3:29:56 PM)

Yes this is a rant. Yes it has to do with something other than random idiocy or bdsm. Yes it is personal. I hope that's perfectly okay with everyone and if not, then...well....yanno.

As many on these boards know, I have severe and now determined childhood onset fibromyalgia, probably helped along with chronic fatigue syndrome of equivalent severity and duration, along with a bunch of other not fun crap. It has been more or less completely treatment resistant. My last set of doctors were worse than the ones before them and I am currently two months into a 6 month waiting list for a doctor that's supposed to be one of the absolute best in the business. In the meantime, I have no pain relief, no help with sleep, no access to physical therapy, massage, alternative treatment, etc.

I just cleaned my house. Yeah, I know, what? Do I want a cookie or somethin? Well dammit, yeah I do! It was so hard and excruciatingly painful and that was with the help of a family member. I literally spent more than the typical person's eight hour workday getting through the ordeal. I literally had to stop every 10 minutes and just sob. Then I had to pick myself up and keep going. I just finished and sat down for more than a few minutes and I literally can't move. I can't get out of this chair. That is NOT an exaggeration.

My saplings come home from their visit with family soon. Hubby's at work and I am on my own. My muscles are in knots and spasms. I don't have enough strength to push myself out of the chair and the pain would put me on my ass on the floor if I did manage to get up. Isn't that just peachy?

My house is actually a moderate sized two bedroom apartment. Some would even call it small. It isn't as if I just cleaned a massive castle of a house. I try to keep things up so that it isn't so overwhelming when I do the big cleaning each week. Alas, it is never enough.

I am sick of this! I am disgusted with needing help with every little thing in life. I can't stand not being able to just live my life. I don't know how I'm supposed to do all those "good patient" things like eat often enough or go out an get some exercise when just the basics are too much to handle. I'm tired of new symptoms, syndromes, and such popping up and making life even harder.

Did I mention I haven't slept anywhere close to normal since before Christmas? This is because I now itch in my head, neck, shoulders, down my back, and my arms. There is NOTHING there. There isn't even any redness, just this phantom itch that seems to get extra intense at night. Add to that not being able to find a comfortable sleeping position, having had a nasty chest cold that creeps back just when I think I am getting better, and overall disruptions because of other conditions, and I haven't been making the grade on getting much needed sleep.

Four more months huh? Then I get to try some things that may or (more true to my past history) may not help. I have expressed before how it seems like we are down to only some of the most outrageous treatments available. It's all so disheartening. And today, it just hurts...on so many levels. Thanks for listening.

lovingpet



Lockit -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 3:44:04 PM)

((((((((((((((((LovingPet)))))))))))))))))))

I really wish there was something more that could be done to help you! To help all of us... I am in the same boat today because I decided I couldn't stand one more toy where they have been for the last year and to try to find a way to put things someplace... somehow.

With that itch... I found extreme heat or cold or vibration will sometimes help. Something that triggers the nerve endings in another way. I do this with the restless leg syndrome too. See we grow new nerve fiber endings faster than other people and they seem to go crazy sometimes. Like those pokes or bug bite stings you get or the feeling of them jumping around on fire.

Maybe some aspercream would help. I have found that the coolness of it going on seems to help even more than the cream.

We tend to get sick of it and then overdo... Can't stand the house untidy another moment or to be still and hurting... might as well do something and then you pay for it... in hell.

Can you try a hot bath and maybe calling the doctor on Monday to see if they can fit you in with someone else in his office because you are in crisis?

I really hope you find something to relieve some of the symptoms and/or pain!



pahunkboy -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 3:50:42 PM)

Gosh- that sucks.

I am so sorry.   Watch the weather patterns as I think they disrupt things.



lovingpet -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 3:57:51 PM)

Hugs Lockit! I may have to send hubby out for some supplies when he gets home. I am also having the "heavy clothes" feeling. Everything just feels like it weighs a ton and literally hurt me to keep them on. It was warmer today, so I could afford to go with a bit less, but it still wasn't enough. This NOT the way to get me to go au naturale! [>:]

Pa, I do know that weather and certain girlie issues both are bad news for me. I had hoped that with the warm up would come some relief, but I swear it actually got worse today. *sighs*

lovingpet



Lockit -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:00:58 PM)

Sounds like a major flare up and you may be in for some rough days... especially since you pushed. I know we get used to suffering and will just wait it out... but maybe you could see a different doctor or ER for some 'right now' help. That doesn't work for me here without my old doctors... but... it might work for you.



sophia37 -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:05:38 PM)

That sucks. U R not alone. You cant even touch my body in some places without me wanting to cry. And the itching, Ive got that as well. I get someone to scratch and for the life of me, I cant then find it.

So. There is a foam roll that you can buy to massage your legs with. Yes it is very painful to do so. But afterwards there is a difference. Ive given you this link not so you buy it here, but so you know it exists. http://www.nefitco.com/foam_rollers.html?source=%22google%22&gclid=CK6fnNLMp58CFY915Qod_3lc0w

For the itching, Ive found over-the-counter anti-itch stuff helps, but I have to use it several times before the urge lessens. I just stay with it.

Im sorry for your suffering. But there are ways to help it, thru massage and exercise. No matter how it hurts, stretch yourself every day. Its take some time but give yourself about 6 weeks before you quit trying. Mark the calendar. Good luck!



LafayetteLady -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:09:02 PM)

I know how you feel, really I do. And it sucks. Big time. I would follow Lockit's advice on calling and begging for an appointment as an emergency.

Try some topical creams for the itching, and also maybe try some benedryl. Unless you have had a reaction to that in the past, it couldn't hurt to try. It might also help with some much needed sleep.

I'm sure you hear over and over, the key is to not overdo. But if you don't "do" then how the hell does it get done? I'm looking around at my mess of a house right now and disgusted by the appearance. I don't have the benefit of someone to help me. Except for the young boy across the street who will come by if he sees my garbage isn't out on a Tuesday night.

I'm also sure that you are aware that many fibromyalgia patients also have vitamin D definciencies, so if you can up your dose a bit. It might not do anything, but again, if you know your levels of D are low, it can't hurt.

Is it possible to go to your local ER and at least get some meds to hold you over until your appointment? Or your primary doctor? I'm thinking that if you explain the problem of being on a waiting list, one might take pity on your situation and give you a script that will help.

Honestly, if we lived at all near each other, I would offer to help. We would both suffer in pain together, but they do say misery loves company, right?

I hope that the rant helped. I for one say that if it did, throw one out whenever you have the need. In the meantime, now that your rant is done, try to take a deep breath, be grateful for the help and try to not overdo again for as long as you can.



lovingpet -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:09:45 PM)

My GP was very good to me in the initial stages and is still a doctor I trust, but he has stated he really doesn't feel comfortable managing the fibromyalgia with me. He has made now a third referral to try to get me some help. I don't know if he would be willing to see me or not, but I will at least have to wait it out until Monday for his office. My last trip to the ER for this kind of thing was met with eyerolls from multiple staff members and a shot of ativan. They refused me any pain meds and told me to "sleep it off". The triage nurse even pumped up the blood pressure cuff to over 300 with a nasty look on her face. For the record, I have LOW blood pressure. Needless to say, I filed a few complaints both with the hospital and with the state medical board. I think I'm pretty well stuck for now. I might consider an urgent care type place if I get there tomorrow.

lovingpet



pahunkboy -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:13:09 PM)

I dont have that condition....  tho I do have injuries.  When the barometer changes - was the worst.

I have mixed thoughts on PT. 

If it would make you feel better- I can send a large cake with a  hot man to jump out of.....



pahunkboy -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:14:44 PM)

quote:

ORIGINAL: lovingpet

My GP was very good to me in the initial stages and is still a doctor I trust, but he has stated he really doesn't feel comfortable managing the fibromyalgia with me. He has made now a third referral to try to get me some help. I don't know if he would be willing to see me or not, but I will at least have to wait it out until Monday for his office. My last trip to the ER for this kind of thing was met with eyerolls from multiple staff members and a shot of ativan. They refused me any pain meds and told me to "sleep it off". The triage nurse even pumped up the blood pressure cuff to over 300 with a nasty look on her face. For the record, I have LOW blood pressure. Needless to say, I filed a few complaints both with the hospital and with the state medical board. I think I'm pretty well stuck for now. I might consider an urgent care type place if I get there tomorrow.

lovingpet


I know what you mean by ER eye rolls.

I went thru that a few times.   



LafayetteLady -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:18:50 PM)


quote:

ORIGINAL: lovingpet

My GP was very good to me in the initial stages and is still a doctor I trust, but he has stated he really doesn't feel comfortable managing the fibromyalgia with me. He has made now a third referral to try to get me some help. I don't know if he would be willing to see me or not, but I will at least have to wait it out until Monday for his office. My last trip to the ER for this kind of thing was met with eyerolls from multiple staff members and a shot of ativan. They refused me any pain meds and told me to "sleep it off". The triage nurse even pumped up the blood pressure cuff to over 300 with a nasty look on her face. For the record, I have LOW blood pressure. Needless to say, I filed a few complaints both with the hospital and with the state medical board. I think I'm pretty well stuck for now. I might consider an urgent care type place if I get there tomorrow.

lovingpet


Ok, you trust the GP and even though he doesn't feel comfortable managing the fibromyalgia, he referred you to someone with a 6 month waiting list, so if you need to guilt him into prescribing something. As I'm thinking about it, I wouldn't wait until Monday. Call his service and ask that he call you back. That will really make him understand that you are in serious need of help. If you wait through the weekend, it is too easy to take the attitude of "well you made it through the weekend, so it must not be that bad." I know it is probably not your "style" but you need to make him listen and listen NOW.

As for the triage nurse, it would have been worth the pain to smack her upside the head! It would be rare to need to go over 250, let alone over 300 and I have HIGH blood pressure. I will usually watch and yank my arm away if they keep pumping over 200, because I know it isn't that high. As for the rest of them, each on who rolls their eyes or gives you attitude, take their name, and report them to their supervisor. If the supervisor rolls eyes at you too, do the same. Contact the head of the emergency department and let them know what their staff is like.

I know you are in pain and are always much more demure around here than I could ever bear to be, but maybe it's time to really get "in their face" and get yourself heard.



Lockit -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:19:48 PM)

Yeah... they tagged me a drug seeker without an exam or looking at my medical records because I was allergic to so many medications it looked like I was trying to narrow things down to get a certain medication. I got sick of being called names, treated like a criminal and not having my records read to show proof of what was going on. Try telling them you have a rare genetic illness they never heard of... they act like you are creating things to add to the drug seeking.

So... I got stubborn and refused to be treated that way again and have done without any help or care at all. I am sorry for it.. but after 36-41 years of doctors doing this and short takes inbetween with half decent doctors... I said no more. It's like a ptsd thing to visit a new doctor. Terrifying because of how cruel they are.

When I got to MO and called around for a doctor... every person I talked to said... good luck with that. Had I not spent every dime getting here and set up... I would have moved back to Colorado.



WinsomeDefiance -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:32:34 PM)

Hi Lovingpet, (HUGS)

I know how much you are anguishing, and I feel for you.  I too have Fibromyalgia, complicated by Lupus, and have been through the test, after test, where no one seemed to understand just how bad it is, or can be. I know how very disheartening it can be, and how alone in the suffering you can feel at times- even around those you love and who love you.  I won't list medications here, but if you want to send me an email on the other side I can share with you some things that were helpful for me.  Not a cureall, and I still have some bad days, but at least I have some good ones too now.  One of the medicines now available for Fibromyalgia, is one that most general practice doctors are willing to presribe, and you may not have to wait before seeing the specialist to get some relief.

Hang in there ladybug.

WinD



lovingpet -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:42:15 PM)

Thanks for the comissuration! Right from the initial diagnosis, my GP discovered a MASSIVE Vitamin D deficiency. When I say massive, they like the level around 40-50 and mine was 8. We started extremely aggressive supplementation and got it up to, at one point, 15. Whoo Hoo!!!!! When I say that I am saying I was very near to 175,000 IU per week. We did a regimen of nude, no sunblock sunbathing over the summer. The highest I managed has been 20 and it dropped within 48 hours of the prescription Vitamin D being finished. I know this because my GP tested it on the last day and my endocrinologist tested it two days later at that appointment. We have not a clue what's going on with it.

I will be calling every doctor that might have mercy on me in the morning. A few do have Saturday hours. I don't necessarily need an appointment. Then again, the scripts they are liable to write I have probably already blown through, so will have to see what they are willing to offer at this point.

It does suck. I didn't want to push myself, especially as bad as I've been feeling lately, but the landlord is doing a "housekeeping inspection" due pest issues in the building on Monday. It basically means they are looking for people to evict so they can charge more rent to the new tenants. My home wasn't a toxic waste dump, but it probably would have been enough for them to nitpick at. It was self preservation, I swear.

At any rate, hopefully your recovery is coming along nicely and you can soon conquer the mess! Take good care! *hugs*

lovingpet



OrionTheWolf -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 4:51:59 PM)

Hiya lovingpet,

Do some research into your conditions and the use of accupuncture. If you can find a really good Eastern medicine doctor, they will examine your diet, what you do as well as your medical history. You will be surprised at some of the results they can get.

It should not be a replacement for other treatement, unless the other treatment is doing nothing for you, but it can always compliment any Western medicine treatment.

Also, look into some Tai Chi for full body health and energy.



winterlight -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 5:16:27 PM)

These are too long for me to read right now. My eyes are hurting. Have you tried the Fibromyalgia association? I believe that is the name.

I seem to recall months ago there was a drug out (new?) for people with your condition. I know somebody that has it and i told her about the drug but now i cannot remember the name of it. She can't take it because she is on other meds and they would clash. I haven't talked to her in months and months.

I hope that helps little that it was....:(



lovingpet -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 5:17:47 PM)

Thank you lovely people! *hugs back to WD*

I'm having a little trouble keeping up and I am sure those responding to this thread understand. I put a call in to his on call service and am expecting a return call. Fortunately, I had the foresight to take the phone with me when I sat down.

I hope to try some accupuncture and some other alternatives soon. Insurance is a bit of a pain about it, but I should be able to get it covered if I have a referral. I know the coverage is less than for other therapies, but it sure beats the cost associated with some of the remaining options. I basically know what to try and the kind of sequence of steps. It is just getting to a doctor who is willing to take that next step.

Oh, and Pa, are you volunteering for cake duty? [;)] I'm waiting....

lovingpet



lovingpet -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 5:19:03 PM)


quote:

ORIGINAL: winterlight

These are too long for me to read right now. My eyes are hurting. Have you tried the Fibromyalgia association? I believe that is the name.

I seem to recall months ago there was a drug out (new?) for people with your condition. I know somebody that has it and i told her about the drug but now i cannot remember the name of it. She can't take it because she is on other meds and they would clash. I haven't talked to her in months and months.

I hope that helps little that it was....:(


Every bit helps sweetie! Take care and I hope your eyes can get a rest. *hugs*

lovingpet



LafayetteLady -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 5:27:43 PM)

lovingpet,

Yea, I think my lowest Vitamin D was 7.5, lol. Last one it was up to 17 and the doctor was still very unhappy about it. I kind of bitched that I should get some credit for getting it to double! When the level was higher did you feel better? That's the big question. Even if the "better" wasn't lots and lots, a little better is a little better. For whatever reason, your body won't maintain your levels independently, so you just keep taking supplements if it helps.

As for the drugs you have blown through...same thing. Right now if any of them gave you some relief, until you get to see this new dr. you need to take them. I still say call your GP. He knows you, you trust him, and because he knows you, he isn't going think you are just trying to get high. That's the biggie. A new doctor will think that unless you have a complete copy of your medical records that you tote around with you and even then, they might be leary. If you call your GP, and let him know how bad you are feeling, I think he might be willing to do something.

OrionTheWolf has a point about the accupunture. It has been suggested to me, I just haven't tried it yet. What I was told though was that after 2-3 treatments if there isn't improvement, there isn't likely to be and to stop the accupuncture. But I would say it is worth a try.

As for my recovery, the ankle is sore, but I push through it. It's the other stuff that is still not fully diagnosed that makes things difficult. Like you said, sometimes it all just seems so overwhelming that it's hard to gather the ambition to do it when you know even though the end result will be less mess, the pain that goes with it makes you wonder if it is worth it.

Hang in there.



servantforuse -> RE: I'm Sick and Tired of Being Sick and Tired (1/15/2010 5:39:42 PM)

If you are hurting that much, and I don't doubt you, maybe your husband should be cleaning that apartment. Just saying.



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