Being in Pain Means You Are Crazy !

Fallen hair, slowing returning.
Photo01211645

By using a pain pump, eventually the idea is to get off of all oral narcotics and other pain relievers.  This is done GRADUALLY!  As the medications are tapered down, the morphine in the pump is increased until the goal is met.  Many needing high dosages of controlled substances like this idea as little gets into the system. The morphine drips into the spinal fluid, getting to the nerve pathways.  Very little is needed in contrast to medications taken by mouth.  Each month, the pump is filled (painless for me).  If an increase is needed, then it’s done at that time.  A bolus can be given about 5 times per 24 hours, via a wireless small box the patient places over the pump and presses a button.  This pump gives many a much better life!  Be EDUCATED and have a doctor who is knowledgeable about pumps.  My views and experiences are mine and may or may not be views of other users.  Experiences differ, and my experience is rare.

GENERAL SIZE OF A PAIN PUMP BY MEDTRONICS

GENERAL SIZE OF A PAIN PUMP BY MEDTRONICS

 

 

 

 

In my journey of twelve years of severe pain and TBI (traumatic brain injury/concussion) that may never resolve, I’ve come across physicians who have never questioned if I’m “wrong”. Surely I am the expert of my body, and would know if I’m in pain! Most of these doctors also included my husband in all visits, which is smart on two accounts. One, the divorce rate for couples is up to 75%, and engaging the spouse, keeps communication open. Smart! Number two, is the one in pain is often not aware of their actions, or sleep habits, and what medications help more than others, and many other aspects of their life. Including the spouse, or another who  knows the patient well, has not only helped doctors make better diagnoses, but it actually gives the patient more freedom from pain. Or at least a shot at it!

My husband was a major player in all doctors visits. They talked to me, and then they asked things I wouldn’t know about…. how does she sleep? Does she toss and turn? Do the tremors become worse at night? What do you notice when the pain becomes worse? What medications do you think works best? And eventually, “what do you think we need to do with the meds to help her get relief”?

Did I get upset because some questions were not directed to me? Absolutely NOT! I found it hard to communicate, and came with lists I had kept between each appointment. I tried to be organized, but some things, I wasn’t able to remember or process. I NEVER felt I was commiting some sin, because of being the unlucky person who was on the freeway at the wrong time. And it was a great help in our relationship as husband and wife to be treated as a team, and work as a team.

Sure, we kissed a lot of “frogs”, but found a few Prince’s of physicians!

Fast forward to the 12th year of pain. Unbelievable pain. Pain that kept me from enjoying time with family, and grandchildren. We’ll skip the emotional pain of attitudes from friends and family that weren’t supportive, and turned away in our deepest need. We all know it comes with the territory, not making any excuses, of course.

Being on high dosages of Morphine, and other pain meds, my weight went sky high, and so did the pain! By the end of 2012, I was no longer a functioning member of our family. Isolated, rarely seeing faces, and my husband was not a team member anymore. Why should he come to all the visits – I could get there easily, and he didn’t seem to be important. In fact, I’m not sure why I went to the visits, since it seemed I took up time that was already strapped, and the attitude of “GUILTY until proven INNOCENT” was the attitude.

I brought pictures of my family; my darling grandchildren. They were ‘oouuu and awww-ed” over, and an interest was taken over each one. After a quick run down, I made my point…. THIS was MY family, and yet, I was not involved. I missed so many opportunities, and no longer was willing for this lifestyle. A pain pump had been researched and discussed with others, and I felt it was time. Surprisingly, so did the Pain Specialist. That was probably the last good judgement call that was made for a long time.

First, I was to be weaned from all Morphine. What? Did he not understand PAIN? He quoted some scripture, which was nice, and something about prayer. Okay…. so if I had enough faith and enough “pull” from above, I could do this. I DO believe that those in pain, MUST rely on a higher power, or we would would find it hard to make it this far. I read his bio again and researched him, and it appears he changed from his previous specialty to Pain Management, as he had his own personal pain, and prayer was his cure. Oh, why didn’t I think about this before choosing him.

I doubt I have to tell much more of my story, er, nightmare! He was firm…. morphine has to be very low or stopped before the trial. My husband knew this was NOT going to work, so he was very careful in monitoring things. I lived in pain, rarely leaving the house in December. So much for the holidays!  I lied. I wanted to have at least 10% of life. I wasn’t off of Morpine, because I knew it was impossible, and this doctor has no clue about the reality of pain. (more to this story!) In fact, I was shocked at his naivety of a pain patients life.

Another surgeon put in the pump, and things didn’t go very well during recovery. The trial was perfect and so much excitement was in the air. Nothing was felt from the pain pump. I was bruised on every portion of my abdomen, but so what, I’d had surgery. I grew out of the band that is worn for the first couple of weeks. My stomach was large, yet no evidence of infection. Finally, I saw my Pain Doctor again, to have another increase in the pump, and he said it was a hematoma on the pump area that was making the abdomen large. Whew! Soon it would be better.  And another hematoma at the base of my spine.  (Whatever for?)

Except… no pain relief. My husband was not going to watch me roll around on the living room floor (literally), so he began giving me small dosages of morphine, along with the other medications. It didn’t help. I went from a .5 to a 5 in pump dosages in about 10 weeks. Emails were written almost weekly begging for help. I was no longer cognitive, and couldn’t think to even try to explain what was happening. I could answer “NO” when asked “have you ever gotten relief”. He kept raising the dosage, but no relief.

Let’s pause here and consider. The booklet that is sent home, which would also be something the physician would be knowledgeable about, said if the patient is not getting relief, check to see if the catheter is in place. NEVER was that an option, but requesting firmly to see their psychologist was! And just who needed to see a psychologist? Time went on, and a mat was made in our living room, and there I lived, with a bath once a week. Curled up in a ball, a helpless husband doing everything he could think of, yet no response. One day it hit me “I have to die! I can not keep doing this.” I didn’t want to tell my husband, but all I could do is cry and say I didn’t know what was wrong. I feared staying alone, even though I was afraid to do anything, the feeling was strong. Saying goodbye each morning to my husband was a fearful thing. Many knew of our dilemma, yet we all know the common responses. Truly alone, I approached my husband, as he had gone into his cave – the only way he knew how to deal with this horrific situation. Calling him out of his cave, got action beginning.  Someday that will be his story to write.  I’m sure it’s a sad one.

Where I lived on the floor for 3 months!

Where I lived on the floor for 3 months!

One Saturday, I didn’t know if I was having a TIA, but something was happening in my brain. Not able to think correctly wasn’t helping! I was scared. I felt I would die. I had been in so much pain, I had forgotten to pray. I couldn’t read my bible. I could call out and ask for help, but did I really have a relationship? As we all know, churches aren’t the best resourse for those in pain. No longer was there effective communication in my extended family. My son would call, and listen or read my emails of not coping and write beautiful emails back.  He was empathic and always there if I needed someone. Three dear friends did what they could, but lived miles away. They came as much as time permitted. My husband was home as much as he could be, making sure food was fixed, and ready to grab. I was no longer a human, just a body in exisitance. Tears were constantly running down my face – it seemed they would never stop.

My husband wrote a poignant email to my pain doctor, begging for help. His reply? Out of town, hang on as best you can and will see you on Monday. Period. May I ask…. would this have been his response is this was HIS mother, loved one, sister? I know the answer…. NO it would not be acceptable. But it was acceptable for another. This was more than I could take in, and the look on my husbands face – the let down – is something I’ll never forget.

If I answered the phone, the smile went on, and the mask became me. How could I explain I needed help? No one really wanted to know. Those who did, got the real story. Those who were in bad health, grieved with me. Mainly, I was just someone with a “headache”, it seemed. We were having a grandchild’s birthday in our club room, and It took all I had to go for a bit.  Scared, alone, intuition strongly said I was dying.  Sepsis came to mind – who knows why, but that would be a death sentence. Funeral plans were made on a scrap of paper.  I wanted my family.  I wanted their rational help.  Words wouldn’t come. We were drowning.  We asked for a family meeting, but was misunderstood.  I could hardly look my husband in the eye, as he finished cleaning up. Crushed.

After 3 months of no relief, and unable to drive 1/2 mile to the doctor, a new PA came on board. He was concerned. The second week I came, (the day after my husband wrote his poignant email, and when I knew I was dying) he wasn’t going to let it pass. (I credit him with saving my life).  I was past communicating, although I knew our internist was very concerned and had done as much testing as she had available to her. She was concerned about the lack of care coming from my pain specialist.  The Pain Specialist practice was headed up by two well renowned physicians, and one was called in to do a dye test to see if the catheter was in place. (only 3 months late in asking, instead of 3 weeks!!).

I had become so hypersensitive to touch, that I couldn’t be touched! I could only handle tight (swaddling) clothing. Showers were pins and needles. I couldn’t use the CPAP, as the air going into my nose was too “annoying” and almost painful. Air could NOT touch me anywhere. I couldn’t think one cognitive thought. I was lost in the milky way of space.

Touching my stomach to do the dye test, brought screams to my mouth, and shakes to my body, fear of me falling from the table was a concern. It felt good to be held down, and covering my mouth, I screamed as softly as I could, as the dye was put in. Concern was high, just because of the hypersensitivity. Then it was announced quietly. “The catheter isn’t in at both places”. (Meaning there wasn’t any hematoma’s, but a mass in front and a sack of morphine pressing on my spine in the lower back!)

I held my head and said over and over “I’m not crazy, I’m not crazy”. I wanted to announce to the world. I wanted it on the headlines! I WAS NOT CRAZY! My own pain doctor had little to say.

The other physician, who did the dye test, was merciful on surgery day. Not being able to be touch, I was “out” before moving me from the gurney. He was the only one who was kind, that- I do remember that day.

The Medtronic booklet says a side effect can be something like an inflammatory mass (which I accepted the side effects, but I did NOT expect to be ignored when things begin happening), he scrapped out a type of inflammatory tissue, necrotic (dead) as if I was rejecting the pump. No one has to tell me what could have happened if it went on. I was right… I would have been dead the weekend after St. Patrick’s day if not for a persistent PA.  The color already becoming brown, sepsis was around the corner. Death, unless one is fortunate, is 24 or so hours later. We went through this with a dear friend, who didn’t make it.

My temp was 99. I don’t bother to explain anymore, because I am not believed. When I run a temp of 99, that is a sign of a higher temp. The meds have caused me to be unable to run a temp over 99, and normally anything under  100 is of no concern.

He showed the pictures to my husband, and was amazed. The Doctor said they completely re-did the surgery, putting the pump in an antibiotic solution, then putting it in a sleeve to protect the tissue against the metal. WHAT? Every video I have seen, showed the pump in a sleeve for protection. I consider this MISTAKE NUMBER ONE.  (In my books). The catheters were unsuitable, and were replaced.

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Three months of excruciating pain, and Morphine was not allowed and was pressured to be prescribed. (thankfully my husband had extra and did the best he could) Throwing up was the norm. How could this happen? How could a PAIN SPECIALIST not click before making so many adjustments to a pump that was NOT working? How could someone be so caught up in “psychology” thinking, and missing something so vital as a patient who was dying a slow death?

I wish I could say this was the end of the story. Because “something wasn’t right”, and I only knew it as “deja vu”, my neck muscles were rigid. My teeth felt huge, and I was completely disconnected to my body. It wasn’t a TIA, but WHAT was it? I knew if I mentioned too much, I would definitely be considered crazy. That night something happened that I felt was serious. I felt I needed to go to the ER, yet I was to ill. My little dog, my personal caregiver who never left my side, put her head over my chest/stomach area and held still. Intensely she was still. Not moving or hardly breathing. Then she sniffed the air quickly and her assessment was done! 🙂 She got in my face and looked fearfully at me. I was as scared as she. She never left my side. Finally, because of coincidences, (?) I looked up seizures. I had them before and I am on anti-seizure medication. BINGO! Deja vu! I was having small seizures that couldn’t be seen by my husband, but could be felt by me. There were blocks of time I couldn’t account for, but had decided it was from the pain. This feeling had been going on for almost a month. Later, I was watching a video I had done and too my surprise….(and horror) I had seizures!  It was noticeable, but I wasn’t aware of them!

Immediately I made an appointment with my Neuro who helped with many of my other issues, including seizures.  I was put in a room with a bed…. I was reduced to this. In a mesh bag, that only my little dog could see out, and one couldn’t see her unless they really looked, she quietly sat and watched. She refused to stay at home, and howled until I returned. Scratching off paint, trying to get to me. I couldn’t leave her anymore. She is quiet, but she has to be nearby. I had to respect her. I doubt anyone knew, except when I went to the restroom, I quietly said to the bag, “I’m okay, I’m going to potty”. She was quiet, but I wonder what the nurse thought? Maybe she looked closer.

Rosie

My seizure dog.

Finally, feeling safe, and comfortable, I could slowly answer questions. Along with improper weaning of Morphine for someone in extensive pain, diazepam had been STOPPED and Baclofen has been started in it’s place. I asked about weaning, but was told the Baclofen would take it’s place.  (not true, FYI!)

Just for your information, Hell hath no fury than a Russian (I think) PA who has began to understand the trauma imposed by someone who called themself a doctor. (her insinuation, but I can’t remember her exact wording). The more she discovered, her anger grew. The doctor she worked with was on his way out of the country, but she called him. I don’t think I would want to know his reaction to her findings.

In their bed, in another area of the office that is used at night for sleep tests, I lay unable to do much. It was too much to take in. To realize this wasn’t my fault. It had nothing to do with my spiritual life, not my psychological thought process, BUT, BECAUSE I had a Pain Specialist who had no business being in the business of helping those in pain. He lacked listening skills. He lacked intuition. He lacked good judgement. And he lacked basic knowledge. I would almost guarantee, he would fail any test in regards to the pain pump. He would have failed, because he had no idea what was in the booklet given to all pain patients. His attitude kept me from bringing up the obvious. Something was wrong with ME.

As I began to get better, I began to realized what had occurred during the past 4 months. All I could do was cry. The hopeless feeling was huge, and where was I to go and get the help I needed. As it has been said many times before, people in pain may not have real severe emotional issues because they have worked through them. But, because of not being believed, mental and emotional issues arise that otherwise would have never presented itself. So there… now my doctor is correct. Maybe I do need a psych!

My drawings became angry, my journals became angry. Not at him, but for what he caused. For what he brought up in our family, the things I really didn’t want to know was there. For the things that was shown of “friends”, and their life and happiness caused them to be too busy to give an hour to a struggling family. I didn’t want to know these things – even though I already did. My anger hadn’t got around to him. It will, and it is beginning. It will start with a long letter, and education.

I have had other physicians, friends, and family beg me to sue. I have good cause, that wouldn’t be hard to prove. But where would that get me? Would it make me feel better? Would it help malpractice rates go down? Would it really change his thinking? Doubtful. He would say “oh, this patient was mentally unstable, but I did the best I could.”

I’ll take another route. I’ll take the high-way. Not one of ignoring him (as he tried to do to me), but of educating him. Of getting rid of the “everyone’s happy” feeling he thinks pain patients life is about, because we don’t tell everything. Because of doctors like him. I’m asked a lot about doctors. Because of where I worked, and experience, and my experience with pain. He is added to the small list of ones to stay away from. The few I talk to of his patients, were interesting. Women weren’t doing too well. Men were doing great. Never dismiss what research says.

How did I get through all of this? I’m not completely sure yet. I know God was with me, because no one else was. Desperately needing to know, I asked for a sign, and it was granted. I did have some friends who went the extra 20-30 miles to come help.  I was fortunate to have a PA who “got it”.

Those on Linked In, were sure I wasn’t “mindful”.  Their judgement became too much. And they don’t even know me. I was given good resources from others (healthcare givers), and found alternative help I hope to use. Ultimately, (as some requested) I had to listen to my body. To realize I KNEW what was happening. To stop and let my body tell me what was going on. To keep the outside voices out. To watch my little dog, who knew more than those with an education. Then, to think about my team, and who would help me. The pieces came together, and the “mystery” solved.

The anger directed by the office of  the Neuro, at such a horrible lack of care, was very validating. Especially, when a flash of anger in their eyes, and my thoughts were verbalized “you could have died”. I thought it was a crazy thought. A dramatic thought. In reality, my body knew it was a realistic thought. I often wonder if I had been with another physician who asked “what do you think is wrong”, would I have known the answer? I think so. Because I had read the booklet. But I had bought into “something was wrong with me, my psyche”.

When teaching at a well-known hospital before the accident forced retirement, that was something we taught to nurses and to patients. LISTEN TO THE EXPERT! Who is the expert? The expert is the one it is happening too! The PhD or MD is basically worthless unless the true expert has a say. If the little things were heard, and thought about, and more probing was done, and maybe even asking the 2nd expert, my husband, proper treatment would have been started, with proper medication, and a happy ending might have been the ending after one month of the original surgery. Especially if a “minor” thing, such as a sleeve, had been put on the pump! All the little “minors”, become “majors”. But, life goes on in their world. Unless it was someone they loved.

The Bounce Blog made a statement about resiliency that has stuck with me:

“Resiliency research has shown that being able to provide meaning to adversity is an essential part of being able to bounce back. This usually involves finding a positive aspect, some silver lining to a crisis. Maybe a new opportunity arises in one area of your life when a bad thing happens in another. Or maybe the crisis begins to make sense later when you get a bigger picture of the time frame in which it occurred.

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It’s going to be hard to find a silver lining here. How do we make any sense at all of a senseless act? Maybe we don’t right now.
It’s part of our human tendency to chew on things for a bit before we figure them out.
It’s okay to not be able to figure this out yet. It’s hard because we so want to understand, we want  it to make sense. Our brains are struggling with this contradictory data that it has encountered.”

Showered, Dressed! A days accomplishment!

Showered, Dressed! A days accomplishment.

My feelings exactly. Time.   Time to think. Time to grieve. Time to heal, not only our hearts, but those who were with us. Then, time to let go. There is nothing “crazy” about this.

And Rosie was promoted with a formal note from a doctor! A Service Dog!  I will write about her later.

 

Fibromyalgia…. isn’t just pain! Guest Blog

http://wp.me/p2LTiN-sQ

This is a must read from Melissa.  It is mainly about fibro, but so much more!  

This was helpful to me to put things in perspective again when we have a bad day. If you go to the menu on my blog you will see my grocery list of issues that I need to update today. That’s what I hand to a doctor because I can’t remember it all. Give yourselves a break and she tells well.  Please leave her comment on here so that she could see if it’s helped you and what you think.

You are all welcome to send in a guest blog.  Just make sure that it’s posted under guest blog and it will appear in the right place.

Thanks again Melissa

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I was talking to a friend at gym this weekend and was telling her about how I have to choose my clothing.  She did not know about Allydonia.  She like so many others have no idea what it means to have Fibro.

I don’t expect non-fibromites to “get it”.  They can’t.

Just like I can’t understand what it is like to have Cancer or have lost a family member to that awful disease.

I have seen enough of my friends deal with having it themselves or one of their family members that I understand what the stages mean, what it means to have bone cancer,  the various treatment options & the side-effects that can occur.

If you have read my blog before you are aware that I am not fond of the Fibro commercials on TV. The only good thing is that more people are aware that it exists.

However, so often when someone hears that I have Fibromyalgia their comment is “Oh, I have seen the commercials for that on TV” assuming the solution is so easy.

What a disservice those commercials have done for us living the life with Fibromyalgia. They make it sound that all we experience is pain and with their “drug” the pain goes away.

When I tell someone about my health issues, I say I have Fibromyalgia & only 7 of its “evil sidekicks.”

Ok, I used to say that.  I now am the proud owner of 11 of the “evil sidekicks” (note sarcasm).

No-one really wants to know our long list of symptoms and coexisting conditions.

I can almost guarantee that half of our families do not even know what we have been diagnosed (especially since if you are like me every time I go to the Doctor~I add something to my list).

I am still trying to understand all that Fibromyalgia can encompass.  To start with, I didn’t know there are 3 types of pains.

Fibromyalgia pain itself is divided into 3 types.

Doctor Speak: Hyperalgesia is the medical term for pain amplification in FMS. Our brains appear to take normal pain signals, and turn them up making them more severe than they would normally be.

Fibro Warrior:  If someone “lightly” taps us on the tush as a fun “slap – IT HURTS US!!!

Doctor Speak: Allodynia is believed to be a hypersensitive reaction that may result from the central sensitization.

Fibro Warrior:  It feels like you have the worst sunburn you have experienced all the time. Clothing, touches, the wind – HURTS!!

Doctor Speak: Paresthesia is the sensation of tingling, prickling, or numbness in a person’s skin that has no apparent physical cause.

Fibro Warrior:  It feels like when your leg “falls asleep”.

I have been working on building my Fibro Facebook page and blog to offer informational tabs along with introducing myself to the newest members of my support group.

I started to type my Fibro history and which of the “evil sidekicks”(co-existing conditions) I have been diagnosed realizing that it really doesn’t explain what that means.  In order to have a better understanding one needs to read the long symptom list and associated conditions.

Sounds like an easy task; simply google information on the Fibromyalgia definition, symptoms, co-existing conditions or treatments.

Right?  No.

There are so many lists to choose from; Which list do we go by?  They can be so confusing.

I thought I would make a page that has it all.

One definition described Fibromyalgia as; “a rheumatoid disorder characterized by muscle pain and headaches”.

Wouldn’t that be wonderful if all it meant having was to have muscle pain and headaches?

I chose to use the following definition;

    DEFINITION

“Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, stiffness, and multiple tender points. “Tender points” refers to tenderness that occurs in precise, localized areas, particularly in the neck, spine, shoulders, and hips”.

    SYMPTOMS

There are many  lists available showing as many as 100 symptoms usually including coexisting conditions. I have always found Healingwell.com a very helpful and supportive site.  Below is their list; Highlighted = I have it.  AND I, CATHY, HIGHLIGHTED NOT ONLY HER’S BUT MINE.  SOME WE DONE’T HAVE TOGETHER, BUT WE ARE BUT AVERAGE…. NOT MANY GET BY WITH ONE “SIDE KICK”.

1. PAIN   2. FATIGUE  3. SLEEP DISTURBANCE  4. PARESTHESIA   5. DEPRESSION 6. ANXIETY   7. PERSONALITY CHANGES  8. MOOD SWINGS   9. SUBJECTIVE SWELLING OF EXTREMITIES   10. HEADACHES  11. COGNITIVE FUNCTION PROBLEMS  12. FREQUENT UNUSUAL NIGHTMARES 13. DYSTONIA   14. FREQUENTLY SAYING WRONG WORDS  15. BURNING SENSATIONS   16. LIGHT HEADEDNESS 17. MORNING STIFFNESS   18. EASY BRUISING  19. MILD BUTTERFLY RASH(LUPUS TYPE) 20. NEUROGENIC INFLAMMATION   21. DISEQUILIBRIUM- Vertigo  22. MUSCLE WEAKNESS   23. SCIATICA 24. PHOTOPHOBIA   25. ALTERATION OF TASTE, SMELL and HEARING  26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS 27. DECRESED PAINFUL SOUND THRESHOLD  28. TINNITUS   29. OCCASIONAL EXAGGERATED NYSTAGMUS 30. CHANGES IN VISUAL ACUITY31. INTOLERANCE OF ALCOHOL    32. ENHANCEMENT OF MEDICATION SIDE EFFECTS 33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS    34. WEIGHT CHANGES  {inc!)   35. RESTLESS LEGS 36. HEIGHTENED AWARENESS   37. POSSIBLE CARBOHYDRATE INTOLERANCE   38. IRRITABLE BOWEL SYNDROME 39. HEARTBURN 40. SUB-NORMAL TEMPERATURE 41. NIGHT SWEATS  42. SENSITIVE TO TEMPERATURE EXTREMES 43. HEART PALPITATIONS   44. BREATHING DIFFICULTIES   45. HEART MURMUR 46. IMPOTENCE 47. SEVERE PREMENSTRUAL SYNDROME   48. FREQUENT VAGINAL YEAST INFECTIONS   49. MUSCLE SPASM 50. NON-CARDIAC CHEST PAIN   51. PELVIC PAIN  52. ABDOMINAL WALL PAIN   53. DRY EYES AND MOUTH 54. TEMPOROMANDIBULAR JOINT DISORDER  55. RAYNAUD’S- like symptoms   56. CARPAL TUNNEL SYNDROME 57. HAIR LOSS   58. VULVODYNIA   59. PLANTAR ARCH

WOW!  Wait we aren’t done.  Now we need to add conditions that seem to co-exist along with Fibromyalgia.  I call these conditions “the evils sidekicks”.    It isn’t known if Fibro causes these other conditions to develop or if they cause Fibromyalgia. No matter what you have to learn how to manage the symptoms of Fibromyalgia and its “evil sidekicks”.

The Evil Sidekicks

Myofascial Pain Syndrome (MPS)Anxiety DisordersTemporomandibular Joint Syndrome (TMJ) Tinnitis (ringing in the ear may be present) Chronic Fatigue Syndrome (CFS/CFIDS) Irritable Bowel Syndrome (IBS) Interstitial Cystitis Syndrome Carpal Tunnel Syndrome Osteoarthritis Cervical and Low Back Degenerative Diseases Rheumatoid Arthritis (RA) Systemic Lupus Erythematosus (watching at it shows up at times with other virus’s) Ankylosing Spondylitis Hypothyroidism Thoracic Outlet Syndrome Polymyalgia Prolapsed Mitral Valve HIV Infection – Immunodeficiency Syndrome, Xerostomia (dryness of the mouth), Kerotoconjunctivitis Sicca (dryness of eyes) Sjogren’s Syndrome – includes Rheumatoid Arthritis. Raynaud’s Phenomenon Allodynia Polymyositis Ossificans Reflex Sympathetic Dystrophy (RSD) Myofascitis Restless Leg Syndrome Migraines Sleep Apnea, Insomnia, Sleep Maintenance disorderDepression Multiple sclerosis  and mine – Traumatic Brain Damage.

This list is long and I don’t know about you but I don’t have an idea what most of these terms mean. It is my hope that by reading these lists you have learned that Fibromites are like Snowflakes – no two alike. We each have our own ever-changing increasing list of symptoms and side effects.

I will leave this blog with one last list ~ Mine

FIBROMYALGIA

Symptoms                                                     “Evil Sidekicks”
Pain                                                                 Allydonia
Fatigue                                                           Myofascial Pain Syndrome
Muscle Spasms                                             Photophobia
Dry Mouth                                                     General Anxiety Disorder
Hair Loss                                                        Seasonal Anxiety Disorder
Depression                                                    Mild Scoliosis
Anxiety                                                           Degenerative Disc Disease
Subjective swelling of extremities             Sleep Maintenance Disorder
Headache                                                      TMJ
Cognitive Function problems                     ADD
Frequently saying wrong words                Periodontal Disease
Light Headedness                                        IBS
Morning Stiffness                                        Chronic Fatigue Syndrome
Easily Bruising
Sciatica
Weight Changes
Digestive Issues
Subnormal Temp.
Sensitive to Temp. extremes

I am a Fibro Warrior ~ Living Life!

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I beg anyone to please tell us how to go about our business as you do, and how to keep quiet, when we desperately need someone to talk too. When do we shop for groceries?  Or run a vacuum over the house?

 I realize that most do not know death could be the result of some of these things.  And I’m not sure about Melissa, but I’ve been plucked out of terrible things, and never had a family even come in my bedroom and just give comfort.  

Because we won’t talk?  Probably.  

Because we have learned a lesson we didn’t want to learn….no one really cares and you appear to be faking it.  

When you need that kind of support, a husband afraid of losing his wife, writing emails to doctors for help before the family comes.  Smiles go on and after a bit, I have to go back to our condo.  A stroke/TIA.  A doctor mistakes and without a doubt I knew I would never make it a week.  And without a doubt I knew if I said something I would be laughed at.  I wasn’t laughed at, just brushed off.  Same thing.  If we hear of someone who is laughing and not caring for someone who is very needy, we are gasping!  What is the difference?

Once, my dear cousin whom we are very close asked me a very hard question.  He is a caregiver also, and has issues of his own.  “Cathy, why don’t family come together and help any more like when our parents were around”?  And I’m supposed to know the answer?  I’m petrified of old age and who will care for us?  Shoved in a Nursing Home is what I see.  No, I’m not saying this out of anger.  I’ve accepted many things and have “cries” later.  

I am scared of when time comes as it has before, and we were a chore.  I love my family, I didn’t ask for this.  I have shielded them from may things, (mainly so I wouldn’t be hurt again).  Charles has said something like this when he is down, but he can get back up a bit better.  Health makes a difference…..  and when these things turn into PTSD, I love it because I’m not close to God.  God is the only one I’m close too.  This is validation… for your horrible thoughts that come your way.  Don’t let them stay – push them away…. things are always not as bad as we think.  (I heard you laughing!)  I appreciate anything that was done for us.  But to feel completely unloved, unappreciated, and no time for even a sandwich fixed….it is hard when you realize you have given all, yet just a conversation that is mellow and understanding.  

One step at a time…. that’s all we have.  Love those who love you and pray for those who have forgotten you.  Don’t let life make you bitter.  And someday the sadness will hopefully go away.  How many articles have been written on how it is impossible to get family to understand?

I would have done better if not for the TBI.  I’m not trusted (which I can understand).  But I can tell my words or thoughts no longer are important enough to stop and listen.  Maybe I should call it Alzheimer’s.  

At least there is more compassion.  I am very thankful for the wonderful counselor and we should have made our children go. I was a blubbering hand full, so maybe it never crossed her mind.  Tommy and Gloria would come, and Tommy being my brother since I was 2 years old, new me quite well.  He let us talk for hours….. if not for that, we would have been worse.  So kind, so gentle.  My other sis/bro were caring for our parents, and I was trying to go as much as possible to help.  This was not the way we planned!  As a sign said…..

“IF YOU WANT TO MAKE GOD LAUGH, MAKE YOUR OWN PLANS.  We are not in control, but we are under the one who is.

Another day in Cathy's Life (1)