posted
ABOUT 2 MOS. AGO I STARTED FEELING SLUGGISH AND MORE FATIGUED EVERY DAY, I'M ONLY 33. THEN I STARTED HAVING AN USUSUAL FEVER OFF AND ON, NIGHT SWEATS, HEART PALPITATIONS, STOMACH PROBLEMS (LOST 50PDS. IN 2 MONTHS, I'M DOWN TO 82PDS.), THEN ONE DAY I WOKE UP W/NUMB, SWOLLEN, ACHING EXTREMETIES, EXPECIALLY IN MY WRIST, HANDS AND FINGERS. EVERY DAY AFTER THAT IT'S WORSENED TO THE POINT I CAN HARDLY GET OUT OF BED, I'M ON DOXYCYCLINE FOR THE LD, BUT I CONTINUE TO WORSEN AND THE PAIN IS UNBEARABLE AT TIMES TO THE POINT THEY'VE PUT ME ON EFFEXOR FOR DEPRESSION, AND SEROQUEL BECAUSE I JUST REALLY FEEL LIKE I'D RATHER DIE THAN LIVE LIKE THIS. THEY'VE PUT ME ON METHADONE FOR THE PAIN, WHICH IS SUPPOSE TO BE ONE OF THE STRONGEST PAIN KILLERS ON THE MARKET, AND IT DOESN'T EVEN WORK AT ALL, I FEEL NO RELIEF AT ALL. I FEEL AS THOUGH THE DOCTOR IS TIRED OF ME COMPLAINING AND TREATING ME AS THOUGH I'M A HYPOCONDRIAC. I RECENTLY HAD TO BE HOSPITALIZED BECAUSE OF THIS, I ACTUALLY WAS DOWN TO 75PDS. AND WENT THROUGH 13 BAGS OF IV FLUIDS IN 3 DAYS. I'M A SINGLE MOTHER, AND I NEED TO GET MYSELF TOGETHER BUT THIS LD IS REALLY KICKING MY *SS. I SLEEP FOR ABOUT 20 HOURS A DAY AND I'M STILL EXHAUSTED, AND IT TAKES ALL I HAVE TO EVEN GET UP BECAUSE THE PAIN IS HORRIBLE (I SEEM TO SPEND THE BRIEF TIME I'M AWAKE EITHER CRYING OR ON A RAMPAGE BECAUSE I'M SO EASILY IRRITATED, I AM NOT THE PERSON I WAS BEFORE THE LD. HAS ANYONE ELSE OUT THERE GONE THROUGH THIS? I DON'T KNOW WHAT TO DO, I CAN'T EVEN WORK BECAUSE OF THIS, IT IS DESTROYING MY LIFE, AND I'VE ACTUALLY CONSIDERED SUICIDE BECAUSE THE PAIN HAS BEEN CONSISTANTLY NON-STOP FOR ABOUT 2 MONTHS NOW. I NEED HELP, AND I DON'T KNOW WHAT TO DO, MY HANDS/FEET/WRISTS/AND FINGERS ARE CONSTANTLY SWOLLEN AND CONSTANTLY ACHE TO THE POINT I CAN'T HARDLY USE THEM, MY BACK CONSTANTLY ACHES, AND I'M RUNNING A LOW GRADE FEVER NON STOP. I'VE EVEN BECOME FORGETFUL AND AT TIMES DIZZY AND DISORENTED, PLUS MY BACK IS SO SORE I CAN'T EVEN SLEEP ON MY BACK, IT'S JUST TO PAINFULL. MY SON TRIED TO GIVE ME A HUG TODAY, AND I ACTUALLY SCREAMED OUT IN PAIN, BECAUSE IT HURT SO BAD WHEN HE TOUCHED MY BACK. THE LD HAS ALSO ATTACKED MY PRE-EXISTING HEART PROBLEM/HERNIATED DISCS/AND GI TRACT DISORDER (IBS)AND MADE THEM 10X'S WORSE THAN WHAT THEY EVER WERE BEFORE. I ACTUALLY FEEL LIKE I'M DYING. DOES ANYONE HAVE ANY ADVICE/IDEAS/ANYTHING? PLEASE LET ME KNOW IF YOU HAVE, I FEEL ALL ALONE, MY FRIENDS AND FAMILY DON'T UNDERSTAND, THEY THINK I'M GOING CRAZY, AND AT THIS POINT IN TIME, I'M STARTED TO AGREE WITH THEM.
-------------------- kris Posts: 3 | From delaware | Registered: Jun 2006
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I'm really sorry you aren't feeling that well. Based on the symptoms you described, I suspect that you may also have babesia. Night sweats, palps, inability to hold your weight, and dizziness are all symptoms of babs. A lot of LLMDs do not believe you can get well until your coinfections are treated...especially babs. It also sounds like you are probably herxing since your symptoms have gotten worst since you started been on doxy. What is your dose of doxy? But you are not crazy...just hang in there. Things will get better. But seriously discuss testing coinfections with you doc.
Hope you feel better!
Posts: 187 | From Gaithersburg, Maryland | Registered: Feb 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there double D,
You are experiencing things that I have early on in my battle with this disease...exactly.
I sincerely thought of offing myself too...
BUT, with time and some meds I got better....
I also had and at times now still get pains that methadone did nothing for...or any other drugs like oxycontin, morphine patches etc and so on...
What alliviated my pains was an IV ceftriaxone for two months followed by one month of clyndamicin.....
You have some ways to go...I might not recommend the clyndamicin for you cuz of your weight loss...
Some of us gain weight like me some lose like you.
The crying and rage are part and parcel to this disease...bipolar in nature....
Hang in there and things will eventually get better...
I'm not cured yet...but I hope you will be.....
Don't expect family to understand...if you need understanding come to this board...PM me if you feel suicidal...or I'll give you my phone number...
In the meantime don't do anything stupid...there is light at the end of this tunnel.....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Diva.
I'm so sorry you are suffering.
Do you have a lyme-literate doc? Sounds like you may not, because you wouldn't be worried about being thought a hypochondriac in the face of such an array of symptoms.
Co-infections sure do sound likely. Have you tested for them?
I'm a single mom too. It's rough at times when you feel awful but have to take care of kids no matter what.
What does your doctor suggest about your weight loss? Are you eating? You really must guard aganist malnutrition.
It's not unheard of to still feel rotten just two months into treatment. That's pretty early.
Can you give us more details? (Without the capital letters, please -- they are hard to read.)
Please hang in there.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
hi,
I have been in so much pain that I only got up to go to the bathroom... and that was a big ordeal ...had to hold on to the walls to get there ect.
I was also sleeping 20 hrs a day and falling asleep in the middle of my own sentences while I was "awake".
With treatment I am so much better than I was. I'm not able to work yet but I am much better.
There are other pain meds and some of them ARE stronger then methadone. Also sometimes some pain medications wwork better because the ingredients agree better with the person. Some ingredients work better with me than others when I was in pain management.
I would tell your pain dr that its not making you functional and you need something else. Mention that you have kids and it is just not you that you have to be functional for.
Do you have a lyme literate dr.? You really need one. Lyme is a very complicated disease. Like others mentioned there are coinfections that complicate the picture.
If you don't have a lyme literate dr. please find one. We can help if you post in seeking a dr.
Don't give up. I was in so much pain and so fatigued and now I can function much better... someday I will be able to go back to work. You can get through this. Treatment can be rough but it is worth it to get your life and your old self back.
I'm sorry about my post being all in capital letters.
To be honest with you i didn't even remember joining lymenet last night until i checked my email tonight, I'm having a really tough time remembering anything these days.
It took me 2 1/2 hours to retype this because my hands hurt so bad.
I've become so scatter brained lately, i can't remember anything. I'm in a really bad place mentally since this has all happened, I don't know how else to describe it.
I also tend to get easily emotional, and ramble on and on about my problems, and last nights post proves that, I think I rambled a little to much. sorry.
I hope this one isn't difficult for you to read. Here is my revised post. -------------------------
About 2 months ago, I started feeling sluggish and more fatigued every day. I'm only 33.
I then started having an unusual fever off and on, night sweats, heart palpitations, stomach problems (I lost 50 pounds in 2 months, I'm down to 82 pounds).
One day out of nowhere I woke up with numb, swollen, aching extremeties, especially in my wrist, hands, and fingers.
Every day since then my condition has worsened to the point I can hardly get out of bed.
The doctors have me on Doxycycline for the lymes, but I continue to worsen and the pain is so unbearable at times that they've had to put me on
Effexor for depression, and Serouquel for the suicidal thoughts, because I just really feel .
They've put me on Methadone for pain, which I'm told is one of the strongest pain killers on the market, and I still have no relief.
I feel like a hypocondriac, every day it seems like I have a new disorder or ailment. I also feel as though the Doctor is treating me as a hypocondriac.
In the past couple months I've been consumed by doctor appointments and tests almost everyday.
They all missed the lymes disease, but managed to diagnose me:
with bipolar 1 disorder, depression, post traumatic stress, attention deficeit disorder, mitral valve prolapse, heart murmur, syncope,
supra ventricular tachycardia, SA node dysfunction, hypotension, acid reflux, chronic irritable bowel syndrome, migraine headaches,
cervical cancer with no human papiloma virus, Addison's disease, allergies, arthritis, degenerative disc disease,
I'm probably forgetting a few but these days I just can't think straight. (All this in a couple of months, and everyone in my life wonders why I'm losing my mind!!)
I recently had to be hospitalized because I went all the way down to 75 pounds. I went through 13 bags of IV fluids in 3 days.
The hospital ran what I thought was every test known to mankind, but they NEVER tested me for lymes.
They kicked me out, with no excuse as to why I was so sick. I believe it's because I have terrible health insurance, but I'm furious now looking back that they never checked for lymes.
I'm a single mother, I get NO help at all financially or otherwise from my son's father . I need to get myself together but this Lymes Disease is really kicking my *ss.
I sleep about 20 hours a day and still wake up exhausted. It takes all I have to even get up because the pain is horrible.
I seem to spend the brief time I'm awake either crying or on a rampage because I'm so easily irritated.
I'm not the person I was before lymes. Has anyone else out there gone through this?
Tonight I took my medicine, ate dinner, then 5 minutes later vomited, is this normal, because I don't even know what normal is anymore?
I don't know what to do, I can't even go to work anymore, the lymes is destroying my life.
I've considered suicide countless times recently, because I've had persistant pain and fatigue for what seems like an eternity now.
My fingers/ feet/ wrists/ and fingers are constantly swollen and aching to the point I can't hardly use them.
My back constantly aches, my son tried to give me a hug today and I actually screamed out in pain when he touched my back.
I continue to keep non-stop low grade fever. Lymes has attacked all my pre-existing medical disorders and made them ten times worse than they ever were.
I actually feel like I'm dying. I've even become forgetful, dizzy, and disoriented at times, to the point I really believe I'm losing my mind.
The doctors are now telling me they think I've had lymes possibly for a lot longer than they thought, because the symptoms are so severe. Any advice?
I've never felt so alone in my life. My family and friends don't understand, they think I'm going crazy, and at this point in time, I'm starting to agree with them." Kate
Wow Kate, you have really been thru the works, you poor thing! Kate, how old is your son?
Your weight bothers me too. We've had another newbie here who can't keep weight on also. I hope she sees your post. She MAY have had something about her weight loss in the subject topic. We've got to get the 2 of you together.
Kate, your sleeping 20 hours a day. Have you ever tested for sleep APNEA where you stop breathing while sleeping? I went 30 years without sleeping; my tests showed apnea & restless leg syndrome.
My apnea tests also showed I get NO delta 4 sleep; that's where the body heals and you wake up feeling refreshed.
You can't work anymore; you have enough illnesses that I know MANY of them are on the adult list of impairments to be APPROVED for SS disability insurance benefits. How long did you work Kate? No. of years .... 20 quarters are necessary.
You should have enough medical documentation stating WHY you no longer can work: extreme limited sitting, walking, concentrating, using your hands, climbing, standing, crawling, bending, etc. That's the stuff needed in medical documentation so SSDI staff will approve.
Do you have anyone close to you who could help you get things together to apply for SSDI and SSI benefits?
Kate, your story just breaks my heart in two. You've got so many illnesses that I've not even heard of.
Do you have a GOOD LLMD, lyme literate MD? I sure hope so; you deserve it.
Kate, would you go back to your 1st post at the top, and edit/PENCIL icon. DELETE ALL THE TEXT .
Then copy what your comments to me of your RESVISED post to your TOP post. Paste it there.
Then folks can read THAT version that is easily readable vs. the all caps, long continuous paragraph.
Kate, you didn't have to retype this whole thing. When I sent you a PM, I explained how you could do it by just copying your entire post to whatever word processing program, MS word, and then edit using the LOWERCASE feature. It will do this all for you; you don't retype anything.
I'm so sorry you took the time with your painful hands to do this, but we now can read your story and can comment galore on it.
I hope you can get some mental help with all the suicidal thoughts you are having. Do you have a special phone line where you live about suicidal thoughts? We do; I just can't remember the name of the program as I type this.
Kate, hang in there .... it's not easy but you now have LYMENET AS YOUR FAMILY. We understand what you are going thru and will provide 24/7 support to you/your son during your journey.
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Kate,
How is your diet?
This is the basic part of getting well. It isn't the total answer to all your problems by any means, but it is a core part of getting well.
Think of it as the foundation. Getting your body into an alkaline state (disease cannot thrive in an alkaline body)through diet will help everything else you do work more effectively.
I had the same swelling of hands and feet as you. It felt like a million bees were in there stinging me and at times I had stabbing pains like a knife was being driven through. Horrible.
I suffered with this for 5 mths before I discovered how much diet can contribute to an inflamatory condition. With research I learned that many diets claim to resolve the same problem. I had to choose which diet I would follow. Since I felt I had leaky gut, I went with a vegan diet. Somehow, throwing meat into my gut just didn't make sense to me.
Within 2 weeks, my swelling was gone and I could walk for 2 hrs without having to sit whereas before I could only stand about 5 mins. Very hard to even stay on my feet long enough to shower.
This did not cure my arthritis but sure helped a lot. Made me functional. If you have had leaky gut before you may already know about diet, but with your swelling, I did not want to assume you already knew.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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bettyg
Unregistered
posted
Kate, retyped this herself and started a 2ND POST on this same subject.
Kate, perhaps you could copy/paste all these replies to your 2nd post and delete this post? Thanks.
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