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)

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