I am a newby! Please help.

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MPCUTIE6
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/14/2010 1:38 PM (GMT -7)   
I have been recently diagnosed with FM. I have had chronic back pain for years. Of course when I mention it they tell me to sit up, watch my posture, use something under my feet, its a strained muscle, blah blah blah. I have gone to a chiro then just went to a soine specialist. After xrays and MRIs he feels I have FM. So I was referred to a pain management specialist. Who I do not like. He says its FM but has not done the trigger points or anything. He came in spent 2 mins. with me and told me to keep coming in for epidural injections.
 
I prefer to know what is going on. And not be rushed. Anyways I have an appointment with a FM specialist on tues. Seems like I am about out of hope after it taking this long to get here.
 
Anyways, I have bad back pain. Its lower back pain, upper, shoulders, neck and my whole body aches. My arms my legs, everything. The only way I can describe this is my brain wants to do so much but I cant get my body to do anything. Its just tires. Now I am a constantly on the go person. I am never sitting still. Until now. I haver taken a leave from work. Its an hour drive each way and that just kills my back let alone sitting at my computer all day.
 
Anyways sorry for venting but I just wanted to know is there hope out there that there is truley a doctor that will take the time to understand and find out what is going on? Will my pain get better? There is so much I want to do with my kids and family but hurt too bad to seem to do anything. Any recpmendations. Thank you all for your support. I just feel I am at my wits end sometimes.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 2/14/2010 2:22 PM (GMT -7)   
Hi, MPCUTIE, and welcome!  You sound like so many of us on this forum.  We go from doctor to doctor, test to test, to find out what is wrong.  It can be a long, drawn out process.  You just need to make sure the doctor you are seeing treats fibromyalgia patients.  Some doctors still think it's all in your head.  I use a board certified Internist for my doctor for nearly everything, including fibro.  Many use a rheumatologist for their fibro.  Still, there are a few rheumatologists that think fibro is a "catch-all" illness too. I always suggest that  you call the office and see if they treat fibromyalgia patients. 
 
Whatever type of doctor you end up with should test you for other illnesses first before a diagnosis of fibro is given.  There are other illnesses that have many of the same symptoms as fibro.  Once they are eliminated, then the diagnosis is usually given.
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibromyalgia, including a list of symptoms and also a link called What Else Could It Be.  This will show you why you need to rule out the other illnesses first.  Many can be ruled out with blood work so maybe your doctors have done that already.
 
Be sure to keep moving, though.  If you sit or lay too much, you will be stiff as a board with fibro and the pain will be worse.  There are some good stretching exercises that really do work in Fibro 101.  Also, you need a gentle exercise to do daily.  Walking and swimming are my gentle exercises of choice.  I always feel better after a walk.  I almost loosen up while walking.
 
Moist heat is wonderful for fibro.  Hot showers and baths feel oh so good!  Many here have a Bed Buddy.  You can get these at Walgreen's and other places.  Or, you can make your own by taking a tube sock, filling it 2/3's full of raw long grained rice and tying a knot in the end.  Pop it in the microwave and it gives off moist heat.
 
I am in control of my pain.  You most likely won't be pain-free but you can be in control of it and have a full and enjoyable life in spite of fibro.  You will need to try different things to see what works best for you because, unfortunately, what works for one fibromite doesn't necessarily work for another.  Some members are taking several prescription medications.  I chose not to do that and have been able to use over the counter meds and exercise and stretching to help me be in control of the pain.
 
I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 supplements to help with my pain and fatigue.  There are links about the supplements in Fibro 101 because many with fibro seem to be deficient in these vitamins and nutrients.
 
I suffered with lower back pain for years, too.  Then I learned how to get in and out of the car and bed correctly and now I really haven't had much of a problem with my lower back.  I still have pain in my middle to upper back, shoulders, and neck.  Here is what I do.
 
 
First of all, I do not sleep flat on my back because it makes my back hurt more.  I don't sleep on my stomach either.  I sleep on my sides with a pillow wedged behind my back.  This way, I can partially be on my back but have support.  That helps me.  I also get out of bed using a cane.  I roll on my side, draw my legs up in a sitting position so the legs are actually hanging over the floor, and then I push off with the cane.  Gravity will bring your legs down and you will be pulled to a sitting position without using your back muscles.
 
When getting in and out of a car, sit on the seat with your feet on the pavement.  Then, either using the seat or the steering wheel, swivel your feet into the car while keeping your back straight.  I buy cars with leather seats because they are slippery.  But, when I rent a car and get cloth seats I had to come up with another idea...and I did!  I get a garbage bag and a towel.  I lay the garbage bag on the seat and the towel over it.  Then I do the above.  The garbage bag and towel let  your rear end swivel like you were on a lazy susan!  LOL  Just reverse the above to get out of the car.
 
Don't use your back muscles when you are lifting things up.  Use your legs instead.  By doing the above things, my back rarely hurts me now.  I hope these suggestions will help you, too!
 
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/14/2010 2:22 PM (GMT -7)   
Dear Mpcutie6,

Welcome to the forum! But I'm sorry to hear about what you've been going through.....and I can relate very well! My very first symptom was lower back pain, but it's been the very last symptom to be explained!

I've changed primary care physicians once, and rheumatologists twice in the past two years. Please don't hesitate to look for another doctor if your current doctor won't listen to you or is dismissive of your concerns. You don't have to put up with a doctor who tells you "it's all in your head" or "you just need to lose weight" or "you just need to have better posture". And you're absolutely correct in saying that your doctor should have tested you for tender points....every single one of my rheumys has done so during the first visit.

Even after being diagnosed with multiple autoimmune diseases plus fibromyalgia, no one has ever satisfactorily explained my back pain to me. That plus mysterious neurological symptoms are the main reasons that I'm currently in a wheelchair. So after several months of not getting anywhere, I finally had to suggest a number of tests I thought might be appropriate to my neurologist, including tests for Lyme disease, B 12 deficiency, a spinal MRI and a lumbar puncture.

Guess what? I DO have Lyme disease, I AM B 12 deficient, and I have pinched nerves due to degenerative disc disease in my lumbar spine!

So now I think I've finally got all of my answers, and all of my diagnoses. I think I have the full picture now....but it's been a long journey.

Yes, there are doctors out there who listen to you, but in my experience, I've had to really look for them. Sometimes it's helpful to check the Internet for patient reviews of doctors.

Good luck!
JoAnn
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com


Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 2/14/2010 2:37 PM (GMT -7)   
I don't know if this will help but I have degenerative arthritis and bone spurs in my lower spine and had back problems for
years. My surgeon did a tummy tuck to take off 15 lbs on my front as my C-section kept getting infected. This alleviated the
back problems. I rarely have backaches anymore unless I really over-do.

MPCUTIE6
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/14/2010 2:47 PM (GMT -7)   
Thank you all for your kind words. I just get so frustrated. On top of all this I have 4 kidney stones and UTI. These are also recurring and noone seems to care besides here take this medicine and hope you feel better.
 
MRI and xrays just show some curvature (scoliosis) but not enough to cause this pain. My current pain doctor is treating me as though I have "leaking discs" although they do not show up in the MRI.
 
This week may be helpful as I will be seeing a neurologist, uroloist and
I am going to see a doctor in canton, ohio Tuesday. He is a FM specialist and has it himself. I have read several of his books and have heard alot of great things about him. So I have some hope. I just pray he is good and doesnt crush my hope. I have just been trying to find answers.
 
Anyways. What should I expect from my first visit? Any recomendations? I have a long list of ongoing pains ect. that I have given to every dr. to help them help me but I dont think any of them even look at it. Should I still give it out?
 
Right now I am not able to work the pain is so bad. Which is not me. I worked up until I went into labor with my son. I am an always going person. Now it feels like I cant get anything done. Is this normal?
 
Thank you all again I will be heading to the 101 page now.
 
We find it best not to mention doctor's names.  It's just a precaution. 
 
I see you are close to Canton.  I lived in Berea for many years!  Do you know where that is?

Post Edited By Moderator (Sherrine) : 2/14/2010 3:44:31 PM (GMT-7)


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40574
   Posted 2/14/2010 3:29 PM (GMT -7)   
Hi MPCUIE6,

Yes I would carry the list with you. It sounds like this doctor might actually listen to you. I know how it feels. One doctor says one thing and another says another. I don't know if we are suppose to use doctor's names on the forum, so if it gets deleted, don't be surprised. No harm done though.

And most wierd things are normal for fibro. It is not a normal disorder. And everybody is different. We all experience different pain levels, some of us can tolerate pain better than others. I have a high pain tolerance, but the fatigue really effects me. So I have a bigger problem with that. I will probaby never be pain free, but I do have it under control.

I am glad that you are going to check out fibro101. You will find a lot of information there. It is a very interesting and informative thread.

I hope that you start to feel better soon. Keep posting and let us know how you are doing. Know that we are all here for you.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/14/2010 3:45 PM (GMT -7)   
MPCUTIE6 said...
Anyways. What should I expect from my first visit? Any recomendations? I have a long list of ongoing pains ect. that I have given to every dr. to help them help me but I dont think any of them even look at it. Should I still give it out?


I always take along a document which I call my "cheat sheet". It includes a list of all of my confirmed diagnoses, list of any pending diagnoses, all of my current doctors with specialties and phone numbers, former doctors with specialties and phone numbers, medications and dosages, dates of hospitalizations, and family medical history. That stuff doesn't change that much so I only update it occasionally. Then I also include a section called "Why I'm here today" which lists all of my current symptoms/problems/medical issues that I want to discuss....I usually change that for each new doctor, or even for each doctor's visit if it's been a few months since I've seen the doctor in question.

I have to do this because I have serious neurological issues, including "brain fog" and memory problems. I simply can't remember everything I need to say unless it is written down. I usually fill out the list of issues under "Why I'm here today" over a period of a few days, little by little, as more symptoms and issues occur to me, then I print it out right before I go to the doctor.

MPCUTIE6 said...
Right now I am not able to work the pain is so bad. Which is not me. I worked up until I went into labor with my son. I am an always going person. Now it feels like I cant get anything done. Is this normal?


What's normal for you may not be normal for another person....but yes, it is very common for fibro pain to interfere with work, with family life, with everyday activities.

Feel better soon! Please let us know how your new doctors work out!
JoAnn
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 2/14/2010 3:51:32 PM (GMT-7)


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 2/14/2010 5:20 PM (GMT -7)   
Hi and welcome. Good luck with the new doc this week. It can get frustrating when you don't have energy than have to deal with doctors and finding new ones when the ones you have don't listen to you. But you will find the right ones and figure out what works for you and what doesn't.
 
Our pain is magnified and what most people might find a twinge is a real big pain for us. I have some arthritis in my upper neck but from the pain and headaches I have from it I sometimes wonder if it isn't broken. We went to a birthday party yesterday and when I'm with a lot of people like that and turning my head a lot talking to people I really pay for it.
 
I know what you mean by having so much in your head you want to do and the body just won't cooperate. I was going to redo so much in my house this winter and I haven't finished one closet yet. But I know I'm making progress if it isn't what I use to be able to do. As long as I'm moving forward I'm doing okay.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


daisyj
New Member


Date Joined Feb 2010
Total Posts : 13
   Posted 2/14/2010 5:47 PM (GMT -7)   
So many of us feel that we have to take the Dr. we are given. I used to be that way, but now I look at it that I am hiring a Dr to provide a service for me. I am putting my health and well-being in his/her hands. When I go to a Dr. for the first time, I look at it as an interview. I usually try to see a Dr. twice even if I was not impressed with the first visit just in case they were having a bad day. But if they really give me a bad feeling, I dont go back. I also try to find out as much about a Dr that I can before I go for my first visit. I ask around, especially if I know someone with similar symptoms. Try to find out if there is a fibro support group around you. Go to it and ask around about doctors, meds etc... Its a long process of finding a treatment that works for you and even still, this seems to be an illness that evolves and what works for you now, may not work next year. Our bodies get used to the meds and new symptoms come up.
 

Melisana
Regular Member


Date Joined Feb 2010
Total Posts : 64
   Posted 2/14/2010 8:24 PM (GMT -7)   
There is a swivel seat that you can put on your car seats to allow you to turn out of your car without the strain on your back with the twisting and pulling. the swivel seat just allows you to just spin like sitting in a computer chair. you can find them several different places.

I would take the list with you to the doctors that way you don't forget something. I have made what i call my emergency medical card that has all my diagnosis and the vaccines i have recieved on it as well as medications I am taking and the family medical history as well as emergency contact numbers. I find this card very handy even when not an emergency because i can just give the card to the nurse and don't have to list off everything. The doctors I go to seem to like it they just make a copy of the card and give it back to me.

I also keep a log of my symptoms so that i can explain them to my doctor faster and easier and again won't forget something. with the log I write down any questions that come up on a day to to day basis ( I was just diagnosed with FM and have a lot of questions still).
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