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no longer myself

KaliskaKKaliska Posts: 1
edited 12/21/2015 - 4:01 AM in New Member Introductions
I think I fit in here somewhere but I don't know where. It's a depressing, unmotivated, headache day and my history of things with no known cause is long so I'm throwing together whatever here.

I was 105 and for a short while 120lbs of nothing but muscle with plenty of energy except a huge insomnia problem likely partially hormonal (I had PCOS type symptoms and have been on birth control since a teenager) and partially anxiety from my life. Then I just crashed one year. No test turned up anything but I am now 230lbs. Several years since the start of symptoms a fall revealed an infection hiding in my lower back that had become almost impossible to move or stand very long and I lost much tissue including a few inches off the top of my butt getting rid of the infection. I have not been me since.

I have been fighting my own body despite steady improvements to my lower back. I thought it was just because I gained weight and got out of shape along with the damage to my back while ill and inactive. The lingering effects of a pain killer given late at night in the ER made me realize some things. After the 5th or 6th time I went up and down the stairs the next day I noticed I was not out of breath, I was not tired, I was not sore, my knees did not hurt... I continued the day feeling more motivated than ever. Around 4pm I started to feel less motivated and strain in my knees. It spread to my thighs as an obvious muscle problem I had not realized existed. Then around my ankles. Finally my calves and back. I soon found myself fighting my own body to move again and getting out of breath easy. I had not noticed exactly what was abnormal before. The next day I was back to my usual just not wanting to move even to turn the room light out when I have a headache or go get a drink when suffering dry mouth from my insomnia meds. It is hard to get motivated and I feel like crying about all the things that need done in the house. Sometimes there will be moments during the day/night that I really have to try hard to drag myself up the stairs and then I am breathing hard for no obvious reason.

I have made frequent trips to the ER with vague symptoms like hyperventilating when there is no emotional stress but no physical cause can be found. Abdominal pain that strikes suddenly at night, lessens after a half hour, and then lingers for a couple days with no explanation found except possible constipation. I'm mostly written off as hypochondriac with panic attacks now. Seriously there is no mental cause of my hyperventilation moments and I want to just beat the crap out of the next person who won't listen.

Random other stuff
I also suffer insomnia that does not really respond to meds
Chronic constipation with less common moments of overactive GI tract causing diarrhea
frequent headaches with most being potential migraines that I have just been blaming meds for
increasing pain with sex and occasional moments of severe abdominal pain with no explanation
Some level of depression
previously lots of anxiety but it has reduced
I am frequently cold, especially in my limbs, and the cold actually causes a burning sensation and a strong need, near panic, that my body needs to get warm
cysts in jaw and thighs when not on birth control
cysts appearing under breasts and armpits the past year

Portions of that are from a note I am putting together to take to a doctor. I've just never put all symptoms together in front of anyone before because they are so many and so vague.

Welcome to Spine-Health

One of the most important things that members can do is to provide the rest of the community with as much information about themselves as possible. It is so very difficult for anyone to respond when we do not have enough information to go on. This is not meant to indicate that you are doing anything wrong or violated any rule, we are just trying to be pro-active and get the information upfront so that people can start responding and your thread is more effective.

So many times we read about members who have different tests and they all come back negative. The more clues and information you provide, the better chances in finding out what is wrong, The fact that your test results are negative does not mean that you are fine and without any concerns. Many times it takes several diagnostic tests and procedures to isolate a specific condition.

Here are some questions that you should answer:

  • - When did this first start?

    . Year, Your age, etc
- Was it the result of an accident or trauma?
- Are there others in your family with similar medication conditions?
- What doctors have you seen? (Orthopedic, Neurosurgeon, Spine Specialist, etc)

  • . Which doctor did you start with? Ie Primary Care Physician
    . Who are you currently seeing?
- What Conservative treatments have you had? Which ones?

  • . Physical Therapy
    . Ultrasound / Tens unit
    . Spinal Injections
    . Acupuncture
    . Massage Therapy
- What diagnostic tests have you had? And their results (MRI, CTScan, XRay, EMG, etc)

  • . Summarize the results, please do not post all details, we cannot analyze them
    . How many different tests have you had over the years? Similar results?
- What medications are you currently using? (details, dosage, frequency, etc)

  • . Name of Medication
    . How long have you been using this?
    . Results
- Has surgery been discussed as an option? (If so, what kind)
- Is there any nerve pain/damage associated?
- What is your doctor’s action plan for treating you?

Providing answers to questions like this will give the member community here a better understanding
of your situation and make it easier to respond.

Please take a look at our forum rules: Forum Rules

I also strongly suggest that you take a look at our FAQ (Frequently Asked Questions) which can be found at the top of the forum menu tab or by going to FAQ There you will find much information that will

  • - Help you better utilize the Spine-Health system
    - Provide pointers on how to make your threads / posts
    - Tips on how to create your avatar (your picture), posting images, etc
    - General pieces of valuable information

Please remember that no one at Spine-Health is a formally trained medical professional.
Everything that is posted here is based on personal experiences and perhaps additional research.
As such, no member is permitted to provide

  • - Analysis or interpretation of any diagnostic test (ie MRI, CTscan, Xray, etc)
    - Medical advice of any kind
    - Recommendations in terms of Medications, Treatments, Exercises, etc

What could be good for someone could spell disaster for another.
You should also consult your doctor to better understand your condition and the do’s and don’t’s.

It is very important that new members (or even seasoned members) provide others with details about their condition(s). It is virtually impossible to help another member when all the details we have are

I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

Diagnosing spinal problems can be very difficult. In many ways it’s like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then it’s up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

Specific comments :

Personal Opinion, not medical advice :

--- Ron DiLauro, Spine-Health System Moderator : 12/21/15 10:01est



  • SavageSavage United StatesPosts: 5,476
    edited 12/23/2015 - 7:37 PM
    Have you seen a pain management Doctor?
    That was best for me! And one of my main goals was to stay out of the ER as I too had to visit ER to stop the out of control pain.
    My PM doctor has so far accomplished that, and it's been years.

    Keeping a list of your conditions, and to the best of your knowledge when was noticed and if continued, sound like a good idea.
    But of course I'd think so, as that is what I do!
    I carry it with me along with my list of meds, allergies and such.

    Maybe there will be a connection, maybe not, but the more information, the more doctor has to work with.
    I was also wondering about your birth control meds.
    Being on anything for years really should be reevaluated periodically...sometimes med itself changed up.

    I've had experience with meds working. Then I don't need so I'm off the med.
    Then I need it again and Doctor reorders and I resume medication, ...but now it is giving me adverse effects I can't live with.
    Some meds I resumed gave me full blown severe allergy reaction.
    Spine-Health Moderator
    Please read my medical history at: Medical History

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