Fibromyalgia … isn’t just pain!Originally posted; Feb. 3rd, 2013
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.
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;
“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”.
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.
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 ACUITY 31. INTOLERANCE OF ALCOHOL 32. ENHANCEMENT OF MEDICATION SIDE EFFECTS 33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS 34. WEIGHT CHANGES 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 Disorders Temporomandibular 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 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 disorder Depression Multiple sclerosis
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
Symptoms “Evil Sidekicks”
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
Cognitive Function problems ADD
Frequently saying wrong words Periodontal Disease
Light Headedness IBS
Morning Stiffness Chronic Fatigue Syndrome
Sensitive to Temp. extremes
I am a Fibro Warrior ~ Living Life!
Thanks for this post.
I, almost simultaneously, posted about similar misconceptions about migraine. (http://lousong.wordpress.com/2013/10/22/migraine-%E2%89%A0-headache/).
I hope that this information will become common knowledge someday, but in the meantime I guess we do have to educate folks and advocate for ourselves, and remember be true to ourselves even when others don’t understand.
People, even doctors do not have any real perception the degree of pain and discomfort this condition condition causes. It’s up to us to get information out to the public. Thank you for sharing.
You are ABSOLUTELY correct. Most don’t have any compassion and just usually I can’t even see a Dr. just the nurse practitioner. But the Dr. will feel free to take away med’s when she’s seen me the entire time I’ve been there. I will never go back to Alabama Pain Center in Birmingham, Al. Will try a different more compassionate place they actual cares about pain people are in, because clearly they do not!!!!!!
“Dr has seen me “once” since I’ve been going there
Oh I know the slapped bottom feeling – that hurts for sure.
Great article about Fibromyalgia, but I’m surprised you didn’t list Chronic Lyme Disease as a possible associated conditions/ evil sidekicks. CLD has the exact same symptoms as fibromyalgia and many Lyme Literate Dr’s now believe fibromyalgia is actually a symptom of an infectious disease…i.e. tick bourne infection. You can find more info through I.L.A.D.S. or lymedisease.com. I was originally diagnosed with fibromyalgia, but once meeting with a LLMD a diagnosis of CLD was given. I started antibiotic treatment and after a lot of hard work my tender points and sensative “sunburn” skin symptoms have vanished. Hope this helps someone 😊
You know I think that could be a separate issue tho…. the reason I say that is that my Mother had Fibro and Now I have it and got it when I was about 38. I’m 44 now. I’m wondering if some things aren’t overlapping when they are different issues. Just a thought. I surely don’t know. Just the hereditary part makes me wonder.
My god you have a twin . Me . Everything you have written I have the majority of. I’ve just been diagnosed with fibromyalgia and osteoarthritis. As well as having numerous other problems you have mentioned. Great to hear I’m not making things up. Thanks .
Hi read this and feel sense of relief im no goin mad and there is someone else who understands what i am dealing with everyday,this condition dictates every part of my life ,what i wear,eat,sleep,where i can go and do,how i think,talk ,how far i can walk and much more tell the truth im sick and tired of being sick and tired,its like im battling with myself every second just dont know how much more i can take 15 yr +suffering 9yr to be diagnosed and my condition not getting no better onlygetting worse ,luv it when people who dont no me tell me what im able to do,my doctor says not fit for work but some health assessment lady says u are,i suffer muscle spasms from head to toe even realigned my jaw.went to pain assesment clinic last week and it was like a breath of fresh air when he looked me in the eye and said “i believe u lisa” not ashamed to say the tears started rolling out of curiosity i asked the question how can i find out if i have a high or low pain threshold, he looked at me puzzled. Is it just me but i thought it was a reasonable question as a mother of having 5 natural births thought that would be the worst pain but no my pains now is of the rictar scale ,his reply was no we cannot tell now how stupid did i feel.because i was sporty and on the go i feel worthless and lazy and thats just round my family and yes i have thought about ending my life and i would if my kids never kept me going and i just couldnt do it to them.i believe i became ill 5 mths carrying my one and only son my 5th child and hes just turned 15
Our story is very similar right down to the kids being the only thing keeping me here. Keep strong. This original post is amazingly accurate and I have quite a few off that list.
I wish Doctors would listen to what you have listed here. My Dr. keeps looking at me like I am crazy and tells me not to believe things I read on here. I wish I could give him just half of my symptoms…….