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Burdensome Love
Regular Member


Date Joined Mar 2010
Total Posts : 21
   Posted 3/23/2010 6:27 PM (GMT -7)   
Hi there world... I am not quite sure where I fit - either Chronic Pain or Chronic Fatigue or something else yet to be diagnosed by a doctor, but all I know is what I feel. I am new to this environment. I have seen what forums can do for people and I thought maybe I should get in on some of the healing.

I have so many disorders it seems unthinkable, and I know that there are probably many more people out there in far worse off positions than myself, but sometimes for me it feels like the end of the world. And now recently, to add to my list, for the last year almost I have been dealing with an element of chronic pain, some of which makes me feel like I am having a heart attack, that I pretty much don't know what to do with myself, in addition to being so tired and exhausted that I can barely work my 15 hours a week, go to the gym, and keep our apartment functional. Rough life, right?

I am in a new environment, newly engaged, feel 110 % burdensome (hence my screen name) on my fiance, no matter that he has accepted me for me and all that comes with me, and I can't seem to find a doctor who will take the time to investigate why I am in so much pain or so tired and exhausted. I would have to go back home for that.

I had the worst experience of my life at the doctor's office today and pretty much drove home in tears.

Anyway... I guess to sum things up in a nutshell... I need a place where I can vent my frustrations on how I am feeling on any given particular day so I don't always have to go to my fiance, so I don't always have to feel like I am a "burden," and maybe through talking with some great minds on here, I can get some direction and suggestions on how to deal with ANNOYING, FRUSTRATING, THREATENING pain and fatigue.

Thank you to those of you who take the time to read my post!

~ Burdensome Love

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 3/24/2010 1:37 AM (GMT -7)   
I'd like to take this opportunity to welcome you to HW Burdensome. Although I do not have any answers for you, I am sure that others will have some. None of us are doctors here (nor do we play one on tv hehe) but as CP patients we all have a tie to one another through pain. Weather small or large, each of us have one common interest and that is to decrease our pain and to increase our lives or at least understand what causes our pain and where to start for help.

Anyway, I just wanted to welcome you aboard this rocky ship and rant away dear....it does help.

Hugs

Scarred
I live to "Tame My Pain!" 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 3/24/2010 6:15 AM (GMT -7)   
Burdensome Love

I to want to welcome you to Healing Well Chronic Pain Forum! As Scarred said we can not heal you but we can listen to you and lend you our ears, and give you what advice we might have to share with you, and if nothing else, we can offer you kind, caring, and compassionate support,, and let you know that you are not alone in this! It would be nice if you you could share with us, more about what is bothering you, what treatments you have been getting, and what type of pain you are having! Just share with us, what you are comfortable with sharing!
Again I welcome you to our family!

White Beard

pete81241
Regular Member


Date Joined Mar 2010
Total Posts : 73
   Posted 3/24/2010 10:03 AM (GMT -7)   
HI BURDENSOME LOVE
im new too. i hope you can find an answer to your pain and weakness. we are here to listen when thing arent so well.
do you have chest pain. when do you get it?....pete

Burdensome Love
Regular Member


Date Joined Mar 2010
Total Posts : 21
   Posted 3/24/2010 11:30 AM (GMT -7)   
Thank you for the warm welcome!!! Let me start off by saying that I don't expect answers, but a place I can come to for camaraderie and support and maybe ways on how to better deal with my situation.

Well, to start, when I was 16 I was diagnosed with a genetic disorder called dystonia. This disorder involves involuntary contractions of your voluntary muscles. Sometimes the muscle spasms can be on a macro scale, sometimes they can be on a micro scale, and more often than not, in my case they are on a micro level which constantly has my body on the go and can be a great source of fatigue. Then there are those occasions, depending on how much stress I have had to deal with at any given amount of time, when the spasms go into macro phase and my whole body is jumping around. For treatment, I take the generic for Topamax which normally treats seizures. Two off label uses for it are migraines and dystonia - I have both of these... killing two birds with one stone, and I get to lose a few lbs with it. The one thing I can be grateful for is that I look perfectly normal and nobody could tell that I am disabled with this disorder and have a number of physical limitations.

In May 2004, I think, I can't remember the year anymore, I was the passenger in a not so bad car accident. However, this car accident left me with a chronic back injury. From this accident I was left with an annular tear and bulging discs in my lower lumbar region, all the way down to S1. The discs were completely devoid of spinal fluid. No amounts of physical therapy could make this injury get better. I am not able to lift more than 10 lbs and I have to make sure that I keep my core strengthened at all times, which is very difficult to do when you have so many other conflicting limitations. So, leave it to say, my back hurts a lot.

In July 2009, I was rear-ended AGAIN!, compounding my previous chronic injury. I now have a second annular tear, the bulging discs are bulging out further, and I now officially have degenerative disc disease. Again, try to take care of myself as much as possible by going to the gym and staying fit, but having known limitations makes it very difficult.

On the side, I have several other conditions which I don't much care about anymore as they are medically under control and managed every 6 months. I have hyperinsulinemia, which is the opposite of diabetes, however I take a diabetic medication to fix the problem. Along with that I have polycystic ovarian syndrome, and hypothyroidism.

Then about the time I moved up to Santa Barbara with my fiance, I started having these bouts of random pain.... pain in my legs, pain in my arms, pain almost everywhere. I couldn't associate it to one particular place. It would last for about a week to two weeks and go away. It comes and goes off an on and sets me back every time it does.

The newest development has been major chest pain. I developed that in January. I was having an endoscopy/colonoscopy done to clear me of my ulcers and that week I had developed this major chest pain on the left side. It wasn't heart attack status. This pain persisted for at least two weeks. I asked my gastroenterologist if it could be related to my ulcers. When she told me my ulcers were gone and really felt that it was stress related, I was stunned. By the time I got back home from Orange County, I was still have the chest pain, tums weren't working, and I didn't feel like I was stressing over anything at the time to warrant such severe chest pain that I went to a GP here in Santa Barbara. She did all the usual tests to clear me of heart problems. I am A OK.

Randomly, the chest pain went away... then, for the last two weeks my calves have been been so painful and I have had random sore spots near the shin. My knees have been impacted as well and have been swelling. In order to sleep, I have to rest with them elevated. Yesterday I was sitting at work reading out loud to the girl I work with and all of a sudden I get this major, sharp chest pain that makes me nauseous and all fuzzy in the head like I am going to black out. I felt like the calf pain and the chest pain together warranted another visit to the doctor. I go to the same GP here and again all my vitals are good except for me having a low grade temperature and the chills like no other. All she does is clear me for being a medical emergency and pretty much takes the attitude that I need to take up this issue with my doctors back home. I told my fiance and my mother that if I die tomorrow to report this doctor for not taking the time to investigate the issue further. This doctor said some pretty nasty stuff in addition to her general comment that really upset me, but I don't want to muddy the waters here.

So, I am home now with my calves just aching at the moment, and an off an on ache in my chest and I can't get home to Orange County any time soon to get to a REAL doctor.

Thanks for reading! :)

~ Burdensome Love

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 3/24/2010 3:30 PM (GMT -7)   
Burdensome Love

I am sorry that your Doctor is treating you that way! It rather angers me that they treat patients with such disrespect! There are so many things that could be causing your problems, but until you actually find out what it is that is causing your pain, I would definitely take it easy and not over do it! I am glad that you found us here, I think you will find that the people here are very attentive and supportive, and really do care! at least allot more than what apparently your one Doctor does! I do hope that you can get to see another Doctor that cares and will at least try and find out what is causing all your pain!

Good Luck to YOU!

White Beard

Abol76
Regular Member


Date Joined Mar 2010
Total Posts : 74
   Posted 3/24/2010 3:47 PM (GMT -7)   
Hi burdensome love! Welcome to the form! Two of my coditions are PCOS and hyperinsulineamia. Just wandered If you knew that the two more often than not come hand in hand? I'm also on diabetic meds and it's really hard to loose weight. My high cholesterol is because of the PCOS also. Go well! X
Arthritis, GORD, IBS, PCOS, Neurosarcoid, Hypothyroidism, psoriasis, mental health issues, BIH, high blood pressure and high cholesterol. . . Methotrexate injections, folic acid, Prednisolone, Alendronic Acid, Adcal D3, Morphine, Lansoprazole, Domperidone, Norethisterone, Metformin, Levothyroxine, Amitriptyline, Sertraline/lustral/Zoloft, buspirone/buspar, Carbamazapine/Tegratol, Risperidone/Risperdal, Melatonin, Lisinopril, Atorvastatin ". . . but hey, Tomorrow is another day!" :-)


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 3/24/2010 4:01 PM (GMT -7)   
Hey somelove welcome to the family , you've come to the rightplace to vent your tension and receive caring empathetic listening in return .We've all been there , taking our turns venting , then receiving the caring that heals us , and then listening to our friends and helping to heal them , you are very welcome to join us and its no burden at all , simply human . The seeming  injustice   of a car accident can be frustrating and difficult and doctors can be as insensitive as any other proffesion as well , you'd think the training to deal with the public , especially folks with health issues would be extensive however it sometimes seems the one aspect of the medical profession ignored . try not to take it ti heart , those are unhappy people , feel sorry for them , and come here and we'll help you move on  my friend . Mikel
HIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment  .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment              .Medecines -   Celelbrex ,viracept,truvada, lasix .    '                                                                                                                         


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 3/24/2010 4:16 PM (GMT -7)   
Welcome to Healing Well!

So many of us can relate to your posts....especially dealing with multiple medical issues and insensitive doctors! I'm so sorry that you're going through all of this right now, and I hope that you will get to the bottom of your strange symptoms soon!

Just a thought, but whenever anyone in my family has started to have lots of odd, random symptoms like that it has turned out to be an autoimmune disease of some sort. Of course, my family is genetically predisposed to AI diseases....but has anyone suggested blood work to look at your ANA or whatever? I certainly hope that's NOT the answer to your mystery, but it's good to rule these things out!

Best wishes to you!
((((((hugs))))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


pete81241
Regular Member


Date Joined Mar 2010
Total Posts : 73
   Posted 3/24/2010 4:30 PM (GMT -7)   
hi again...
you certainly have reason to feel stressed by these painful symptoms. i am so sorry they are bothering you so much.
my curiosity got the better of me and i checked the mayo clinics web site. they claim that a complication of dystonia is pain. i guess the stress on the muscles causes it. look it up and show to your dr. hopefully he has a treatment.....my best to you....pete

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 3/24/2010 5:53 PM (GMT -7)   
Hi Love,

I really understand your pain and frustration. So many of our symptoms are similar....not exact, but very close. I am not a doctor and am not giving any medical advice, but perhaps you could read up on adult growth hormone deficiency. There may be some infomation that you might want your doctor to see. I have been told that only a certified endocrinologist can do the stim test, but again, I'm no doctor so I'm not sure. All I really do know is that your symptoms sound very familiar.

Did any of the accidents somhow injure your head? If so (perhaps an air bag to the head), you really may want to look into this. We believe we have linked my actual onset to an accident where I was hit with an airbag in the side of the head. It had so much force that I felt like someone had hit me with a baseball bat. I didn't do anything at the time because the pain went away. The problems developed after that.

Besides the suggestion, I want to offer a willing ear and a kind heart to support you during this time. This is a wonderful board and everyone will support you if you only ask.
Formerly PrayingForRealRelief...
 
DDD, CHRONIC PAIN SYNDROME, TLIF L5-S1 2009 (failed), FIBRO, MINEYER'S (SP?), VERTIGO, MIGRAINES, GERD, SLEEP DISORDER, NISSEN FUNDOPLICATION (failed), DEPRESSION, EXTREME ANXIETY DISORDER, OCPD, PTSD, CHRONIC MUSCLE SPASMS, HUMAN GROWTH HORMONE DEFICIENCY, VITAMIN D DEFICIENCY, CARPLE TUNNEL SYNDROME, EXTREME IDIOPATHIC HYPOGLYCEMIA FROM AGE 12
 
 
 
 


Burdensome Love
Regular Member


Date Joined Mar 2010
Total Posts : 21
   Posted 3/24/2010 6:37 PM (GMT -7)   
Thanks everyone for your empowering messages! I have a feeling that is what I need now and in the future to get me through what will be a tough life ahead, but I still remain positive! :)

Abol76: PCOS and hyperinsulinemia do go hand in hand and the best treatments for them are the diabetic medications. I am on Glucophage XR. The minute I was put on treatment, I was dropping lbs. Yes, weight is a very big issue with hyperinsulinemia. I have always had to be carb conscious and focus more on the proteins. Currently I have found a more vegetarian diet to produce results in addition to working out regularly. I have recently had a spike in my cholesterol... hmmmm....

Pete: Yes, dystonia can bring with it an element of pain depending on how extreme the spasms may be. However, you can usually tell the difference between pain in the muscles vs. simply pain. The best way I can describe pain from dystonia is like you have pulled a muscle and no amount of stretching or massaging can make it go away, just time and rest. I have been on, I feel like, all the medicines available to treat dystonia except for botox. I refuse to do botox. There comes a point in time with dystonia where you just have to go with the flow and take what relief you CAN get from the treatments that are available, because they only treat the symptoms.

Thanks again everyone for your kind words and your support through a tough time. I guess the worst part of it right now is that I am home alone right now and I have been for the last three days, through the worst bouts of my pain this week. My fiance has been in Orange County testing for San Diego Sheriff. He gets back late tonight but I hate laying in bed alone, no one to hold me, no one to give that little extra hug of strength. I know I can be strong, but when I am taken down like that, I need it to come from somewhere else, and the only person I have is me. :(

~ Burdensome Love
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