littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Seriously-I'm so sick of it. It's been 8 months of constant pain for me (I know for some it's been much longer). I don't know how much more I can take. I would kill for a week being pain free.
I've been super stressed lately and my symptoms started getting bad-really bad. And I keep waking up with a stuffy nose-not normal. I've got a cold sore on the side of my mouth and my pain is ridiculous.
How do you people do it who aren't on narcotics? I've tried every OTC med I can even imagine and nothing helps but narcotics. And even sometimes my pain breaks through that.
I'm on cat's claw right now-going to add the rest of Buhner's herbs shortly. Cat's claw not working for inflammation this time around.
I'm on magnesium for shortness of breath.
I'm on flexiril for my muscle pain, neurontin for my nerve pain, and naproxen for the stinkin swelling all of my joints, but still yet I'm in pain.
I get shooting pain, deep pain-maybe bone pain?, headaches, leg pain, arm pain, feet pain, hand pain.
I mean how do you all do it?
My PCP thinks C. Pneumonie is a STD and I have it lol. He is just stupid. He made me sign something saying I won't get treated or get meds from anyone else. Ok not a problem. Don't have anyone else to get meds from.
He thinks I'm a drug addict because he doesn't believe in my pain-that is evident during my appts. I am going to lose my insurance on the 31st so I'm not too worried about finding a new doctor right now. I couldn't get in before the end of the month anyway.
LLMD won't prescribe anything but abx and fungal stuff.
Where do you go for pain meds when your LLMD won't treat it and your PCP thinks your a drug addict with "head" symptoms?
What do you do if you don't have pain meds? I HAVE to work. No if's and's or but's. I have to. We own our own business and if I can't work with my husband then we won't make ends meat. That's just the way life is. I have to be able to function to a degree so I can work and take care of the kids.
I've been under some seriuos stress lately, between work, money, and the car breaking down at work due to a GAS LEAK in the engine!! My symptoms have been horrible! And in less than 10 days I should be hitting the 4-6 week cycle mark so I have idea how that's going to turn out.
Along with taking all my meds and stuff I do the detox baths and foot/hand bath a few times a week. I like the foot/hand one better. It seems to help with a few symptoms for a couple days. I have yet to feel any relief from the epsom bath though.
I have every type of pain possible, muscle pain, joint, nerve, bone, hell even my skin hurts.
I keep asking God what did I do to deserve this? I don't understand why I am in so much pain. Any suggestions anyone?
posted
littlebit I am sorry that you and all of us are having such problems. I am sure there are a lot of people that feel your agony and I am so glad to have people to talk to that understand completely what I am going through.
I had a bad experience with my pcp also. She wanted to blame mine on depression. OK doc I know I'm depressed but depression doesn't cause fevers.
I DO have fevers with my fits.
My skin hurts too, it's weird isn't it. Also all the other pains you mentioned.
My suggestion is to see if you can get hyperbaric oxygen therapy. It may not be possible because of your finances. But it has helped me so much.
I was not able to even stand up straight and didn't even realize it until I started getting the treatments and stood up straight for the first time today. The pain and stiffness in my hips and legs are greatly improved. I could not completely extend my legs before and they were always so shaky.
The brain fog has also greatly improved. I knew I had a lot of brain fog but did not realize it was so severe until I was driving in for my appt time yesterday. I feel like I just woke up from an alternate personality or something.
The depression that was keeping me crying and feeling so helpless is going away.
I am thankful for summer break that has given me time to do get some well needed rest. I came in from the last day of work in May, kicked off my shoes yelled out "I'm through!!", went to bed and stayed there almost constantly the whole month of June and up until this past week.
I will have to return to work in a couple of weeks and without the hyperbaric therapy I don't believe I would be able to. I was beginning to believe I would have to leave my job permanently, which did not seem like an option to me.
You sound like you have a full plate with kids too. I feel for you! My kids are all grown and have kids of their own. I don't know how I would cope if I had children to have to care for. Is there not a family member or good friend that can give you a little time to rest?
I know how it is to have a little time and then you sit there in quiet and think about all the other things you need to be doing. Then you push on and on and on until you have pushed yourself into a great big mess. You have to think about yourself at a time such as this; so that you can better care for the others.
Also I would like to add. Pain is not always because we deserve it. It is all part of life. I don't claim to understand why it rains on the just and the unjust; it just does. Sometimes it is for a reason we don't foresee but GOD does.
2 Corinthians 1:4 Who comforts us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. We can't fully understand another person's pain unless we have been there ourselves.
Then Sometimes the devil sends a curse but GOD turns the curse into a blessing.
Genesis 50:20 But as for you, ye thought EVIL against me; but God meant it unto GOOD, to bring to pass, as it is this day............ Stay positive. It may not be soon but there will be a day of understanding. Have faith! God will give you peace if you seek it.
I pray GOD sees and hears your need, that he will ease your distress and give you peace in the midst of this storm.
God bless!!!!!!!!
-------------------- Life was meant to be lived.....One must never, for whatever reason, turn his back on life. Eleanor Roosevelt Posts: 14 | From Georgia | Registered: Jun 2010
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Where do you go for pain meds when your LLMD won't treat it and your PCP thinks your a drug addict with "head" symptoms?
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Go to a pain management clinic. There's one near Atlanta. They aren't expensive. There may be one near where you are but I'm not sure where you are located. Do a search on the internet.
Any doctor who thinks you are a drug addict when you are in pain is to be avoided - in my opinion. He's living is some barbaric time in his head. No one should have to suffer when there are solutions to this issue.
People who are ill & need treatment are not addicts. If you were an addict - you would be buying drugs on the street from a drug dealer, not asking an MD for help.
Your doctor is living in the dark ages.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Yes find a pain Management Specialist
I found a doctor who does nothing but pain management and they support you and will not let you live in pain.
Well to a point. You can not get to Pain Free but they will get it to cut back to probably like 50 percent.
I have been on narcotics for 10 years and have at times been able to cut way back and near off but then have relapsed or such and ended up back on them or uping dosages.
Do not apologize or let any doctor make you feel bad or like your faking it. Its very real and a very seriously debilitating symptom
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
But I'm afraid to go to Pain management. Don't they want like tons of medical records and stuff? If I tell them I have Lyme disease they too are going to think I'm nuts.
Where I'm at no one believes it exsits...NO ONE. They all say Lyme isn't in GA, HAHAHA boy were you wrong.
Atlanta is far but if they will treat me there without giving me a hard time about having Lyme I'm willing to go there. I am looking into a new LLMD and Atlanta is probably going to be my destination anyway-unfortunately (I really don't like Atlanta-at all).
My PCP is stupid. I mean there is just no other way to describe him. He has no sense.
My husband is starting to get a little ****ed at him. He said he wants me make an appointment with him and he's going to go in with me. And tell him I'm in severe pain. He said he also wants to ask him that if he thinks it's not Lyme then why isn't he trying to dx me with something else.
My old PCP (before he dropped me because he thought I was a drug addict) was at least helping me. He was trying to dx me with fibro and RA but I didn't care-do what you need to do.
I obviously don't WANT a dx like that because it's going to make finding a new insurance company awful. I'll get denied-but at least with the new healthcare plan after 6 months I can apply for that in my state.
"People who are ill & need treatment are not addicts. If you were an addict - you would be buying drugs on the street from a drug dealer, not asking an MD for help."
I KNOW! LOL (that's like yelling in complete agreement-Like AHH you get it!!). That's what I always say though. It is easier for a drug addict to get this crap from the streets than it is for a person who is REALLY in pain. Seriously? If I needed a "fix" that bad I wouldn't be sitting here waiting for his dumb butt to come around.
When he does prescribe pain meds he gives me tramadol-which is all but worthless. I'll take it because it scratches the surface-barely but a little relief. Maybe about a 10% relief-but if that's all I got, that's all I got.
Sparkle- If you could PM the name of the Pain clinic and tell me a little more about them I would appreciate it! Thanks
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Oh and I wanted to add-I told my husband I'm going to go into the office after I've run out of everything I have left and show them just how bad it looks. Of course they will probably be thinking I'm faking that too.
I wish they opened earlier than 9. When I wake up I can barely walk-hands are so swollen I can't close them. I can't grasp anything small-even opening the blinds feels like someone is cutting my fingers off.
I also told my husband I would just fall off the ladder at work (don't worry it's only a 4ft ladder, lol) and then someone would believe in my pain. My step-daughter said she'd push me off-so nice lol.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Pain meds aren't usually that expensive. Maybe some of the newer ones may be more. I guess it depends. Vicodin & oxycodone are cheap. I tried a bunch of them & the only ones that helped me were vicodin & oxycodone.
You can try doing a google search to find other pain clinics that may be closer to you - or you can give this place a call to see if there are other branches. I think it's a chain/franchise sort of thing.
I never went there but I was considering it - so, I can't say if it's good or not. Seems like an option, though.
No one should treat you badly because you are ill. It's intolerable... People & doctors who think ill people are drug addicts should be avoided at all costs. They are the ones who are nuts...
I'd like to see them deal with chronic pain & how fast they run for some relief.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
LOL Sparkle. I don't *wish* this disease on anyone but sometimes I wish some people (including Drs that think I'm a drug addict) would just feel this pain for one day...one day.
But doesn't the pain management clinic want proof of your pain? Or I just make an appointment go in and explain I am in chronic pain...for what? Unknown condition or Lyme? People here don't believe in Lyme, at all.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I got relief from the Epsom soaks. I got to the point I wished I could just live in a hot tub. Then doc said to rinse in cool water. Grrrr.
But it worked. It stimulated the nerves to kick in and with electrolyte replacement so they could do their jobs, it has greatly helped.
For your cold sore I would try the coconut oil at a pinch to start and on sore. As you can herx if you don't ramp up.
You can also try rubbing a ginger root all over you while bathing. It has been proven in the lab to reduce pain by 25%...
Hope you get some more ideas, and relief soon.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't think you have to bring your medical records. You can tell them you have fibromyalgia. They have that on their list of stuff that they treat. I think they want to know if you are taking any medications & what they are.
You don't need to say anything about Lyme if you don't want to. I saw on the website that the first visit is $200 + they charge extra if you want MRIs & stuff. When I called them about 6 months ago, the first visit was $50! Don't know why the price went up...?
Good luck!
Yes, ginger is quite good for pain. You can make a tea or take it in pill form, as well. The Jamaicans used to make a good strong ginger beer but I haven't seen it around for a while. Most of the American ones aren't as strong.
PS - you can also juice the ginger & keep it in the refrigerator. Take a spoon of it when you are feeling painful. You can mix it in some apple juice or other beverage.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
i live with constant hellish pain for 7 years now. i was lucky to find a good doctor. she is a DO and is lyme knowledgable but not a LLMD. she looked at endrocrine, mold, inflamation to see what else was upping my pain.
in other words....you can point to other issues in your pain cycle that is not lyme (even if it is lyme) that "proves" your pain ..like a diagnosis of CSF or Fibro. this can help get around the issue of lyme real or not real BS.
she understands pain and is not afraid to treat. they are out there. you need to find someone who will treat the pain and treat you with respect. find a chronic pain, lyme, cfs etc. support group then you can find from them who is a good doctors in your area.
i use norco, Vicodin with a lower rate of actephmine and i take oxycontin. torodal injections for bad flares have been a life savor. osteopathy has also been a god send.
the oxy was too expensive for me after i lost my insurance. you can call prescription assistance and they will let you know if you qualify for help with your pain meds. the information is free confindential and you can just see without the doctor etc if you can get help.
i tried morphine, fentanl patches, low dose anti-depressents and every natural supplement and body work treatment you can imagine.
some you can dabble in that aren't expensive. like healing baths, or going to spas or gyms to try thier saunas and see if that helps.
try everything you can afford and see what helps but pain meds are probably your best bet for extreme pain. the longer you are in pain the more the feedback message gets ingrained, its not like short term pain.
treatment of the cause is obviously the most important in the long run but when you are in horrible pain its hard to care about anything else. i at least had to manage the pain to eat well or do anything else i need to do to like treat the lyme.
lots of folks here have pain and have good suggustons for pain relief. i am sure you will get some good ideas.
again, find a local support group for the best feedback on who will really see you, what they cost and get some much needed support for what you are coping with. best wishes to you
Posts: 161 | From sonoma county | Registered: May 2009
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sparkle7
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posted
I agree with minerva. Chronic pain is very debilitating. It sneaks up on you & takes all of your energy. In my case, it also made me feel anxious. Meditation helped. I used some CDs from Hemi-sync. It wasn't a long term solution, though.
I've been taking artemesia & it's helped me alot. It depends on the cause of the individual's pain. It's taken me about 15 years to find something that worked. In the mean time, you need to keep your sanity. Chronic pain is alot like torture.
People who say you should "suck it up" or who are stoic are wrong. There's no reason to torture yourself unless you have some kind of weird mental fixation.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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littlebit27
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Member # 24477
posted
I went to my PCP yesterday and he wouldn't even give me worthless tramadol. He tells me he wants my LLMD's report. My husband told him if he doesn't believe in my Lyme to figure something else out and treat me for it. He said he won't do anything without the reports from my doctors. He's so stupid.
I will call the pain clinic here locally and see what I need to be seen there.
Sparkle-if you look on that pain clinic's website it says you much have one proof that you are in chronic pain-either a MRI or CT scan or a doctor's report. I don't have that...or wait? Do I? I wonder if my LLMD will write something saying I'm exhibiting symptoms of fibro. Since that's not a lie-really I am exhibiting symptoms of fibro.
Everyone I know keeps trying to get me to smoke pot. Medical Marijuana. It's not legal here-or in any of the surrounding states. Too scared to do anything illegal.
I have never abused any drug-actually I've never done any drug. I am a smoker-but no illegal or prescription drugs. I've always taken meds as prescribed.
I don't get it. I don't understand how people who are addicted to the crap and aren't in real pain can get whatever they want.
I completely understand why some Lyme patients say they'd rather have something else-because at least people would believe in their pain. It's ridiculous.
It is like tourture. When I tell people I haven't had a pain free day since December they are all like oh man-I couldn't do it. And then I tell them many patients have been in pain for YEARS with no relief.
I agree it makes me anxious as well. When I am calling the LLMD's offices now I ask does the LLMD treat pain and anxiety. I'm on 1800 mg of neurontin a day which is supposedly used for anxiety too-POOEY! It doesn't relieve anything except my skin pain.
My PCP is just so condesending. He makes me feel like I'm stupid as he talks to me like I am stupid. A Pain cream? REALLY? Are you not listening my WHOLE body hurts. If I used the pain cream on every part that hurts the whole tube would be gone in one dose. It's ridiculous. And you can only use up to a certian amount of grams a day-28 I think. Ugh he's stupid.
On a side note about my PCP. I looked him up on the GA medical board and he lost his priveledges at the local hosptial due to quality of care. Didn't know that until this morning. Apparently they are fighting it federal court and expect to win. But now this explains why his office is never busy like other places. It's because people (not me apparently) do their homework BEFORE they go and see the doctor, lol.
Ugh...I'm going to try the ginger. I've been taking the baths-doing nothing for my pain. I'll try to rub it on and see if it helps. I just bought some new ginger for the baths.
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Have you thought about sleeping on an air mattress instead of a regular mattress? Or a water bed?
To me it sounds like you've got inflammation type of pain (and inflammation), and I went through something similar when I first got sick in 1994. At that time, I got a water bed. Getting rid of those pressure points on my body was a life saver. I got a sleep number bed 6 years ago and swear by it.
Inexpensive way to find out is to get or borrow an air mattress. It just may change your life (or not - just guessing here).
Over the counter SAFE anti-inflammatory - Zyflamend by New Chapter. It got me off rx anti inflammatories and it doesn't cause the heart and stomach damage the rx drugs do (naproxen, vioxx, bextra, etc). Some days when inflammation was crazy, I would take up to 8. Veternarians are now recommending it for pets as well.
They stock it at the chain Vitamin Shoppe, but you can find it everywhere on the internet.
Just some food for thought from someone who's LLMD would never give pain meds, but question me until we figured out the source of the pain and a solution. I was very lucky to have such a great doctor. Hang in there.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
You may want to call the pain clinic & talk to someone there. I don't know if you need alot of documentation. You have been prescribed pain meds & I thought you said you had a Fibromyalgia diagnosis. So, seems like you have the qualifications.
There's also a Fibromyalgia & Fatigue Center in Atlanta somewhere. You may want to try them? They are expensive! I also heard that they don't treat Lyme in GA. There's some legal B$ about it in the state of GA.
Don't let doctors discourage you. You pay them - they are your employees!
Most people don't want to take any drug that they don't have to. I know I don't! Sometimes you need them, though. At least until you can find a way to get better.
There's alot of propaganda about pain meds. If you are ill & need something for pain you are not an addict. Addicts know how to work the system or get drugs elsewhere. That doesn't sound like what you are describing.
Find another doctor...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I don't have a fibro diagnosis. I know that is what they want to DX me with. I don't want a fibro DX because then insurance is going to be hard to get. i would rather not have any DX other than Lyne at this point, but if that's what I have to do then that is what I have to do.
At least if I get denied I can get into the program for pre-existing conditions in GA 6 months later. My LLMD won't be covered anyway-And I need a new one who in integrative. The anxiety and pain are just too much for me to handle anymore-on top of everything else I have going on. I need some relief somewhere.
GA has a lot of fun laws-lol. I love GA and hate it at the same time.
I'm going to look for a new PCP. And I'm going to call a Pain clinic that is about an hour from me and see what they say.
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