Trust and Friendship

What does trust mean to you ?

For me as a person with Fibromyalgia, I have to trust my friends; not to judge me not to become annoyed at broken plans. I have to trust myself to make choices that are good for me and not just make easy choices. I have to learn to trust and listen to my body and pay attention to what it is telling me. I need to pay attention to what it’s saying (if its saying you need to rest then I need to rest).

I have to trust in the people around me and that when I ask for help (which is something I don’t find easy) they will step up and help me with what I need. I have to trust that on the bad days when I’m not present to be around because the pain is unbearable that they won’t turn their back on me.

Trust is such a fragile thing that can take a long time to build and can be broken in an instant.

Feeling Left out of the loop!

I have spoken to many people with Fibromyalgia who have said they feel left out of their friendship group or for many have lost friends because the don’t or can’t understand what living with a chronic illness is like. I recently read a quote (sorry can’t remember where but it was on Facebook) that said “You don’t get it till you get it! ”

Is it enough to know what is going on or do you need to be actively involved? Are we left feeling like the circle is just out of reach? Is going out for the day and watching others do things enough (the answer is yes it is sometime enough just to watch but other times it might just be a reminder of what you can no longer do).

What is enough for you and are you doing enough to get what you want ?

 

 

What is Fibromyalgia

As you can see I’m still getting used to this as this post should of been done before the 200+ symptoms, but here goes.

According to the NHS website Fibromyalgia Syndrome(FMS) is a long-term condition that causes pain all over the body.

As well as widespread pain, people with fibromyalgia may also have:

  • Increased sensitivity to pain
  • Fatigue (extreme tiredness)
  • Muscle stiffness
  • Difficulty sleeping
  • problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating

What causes fibromyalgia?

The exact cause of fibromyalgia is unknown, but it’s thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.

It’s also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents.

In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:

  • an injury or infection
  • giving birth
  • having an operation
  • the breakdown of a relationship
  • the death of a loved one

Who’s affected?

Anyone can develop fibromyalgia, although it affects around seven times as many women as men. The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly.

It’s not clear exactly how many people are affected by fibromyalgia, although research has suggested it could be a relatively common condition. Some estimates suggest nearly 1 in 20 people may be affected by fibromyalgia to some degree.

One of the main reasons it’s not clear how many people are affected is because fibromyalgia can be a difficult condition to diagnose. There’s no specific test for the condition, and the symptoms can be similar to a number of other conditions.

How fibromyalgia is treated

Although there’s currently no cure for fibromyalgia, there are treatments to help relieve some of the symptoms and make the condition easier to live with.

Treatment tends to be a combination of:

Exercise in particular has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain.

http://www.nhs.uk/conditions/Fibromyalgia/Pages/Introduction.aspx

As you can see from the post https://therainbowpathblog.wordpress.com/2016/04/16/200-symptoms-of-fibromyalgia/  Fibromyalgia is much more that it seems on the surface it is a syndrome therefore no two people are the same.

 

200+ Symptoms of Fibromyalgia

Fibromyalgia is classified as a syndrome so people will have some of these symptoms. No two people will be the same (this cause people a lot of confusion).

1. Activity level decreased to less than 50% of pre-illness activity level
2. Cold hands and feet (extremities)
3. Cough
4. Craving carbohydrates
5. Delayed reaction to physical activity or stressful events
6. Dryness of eyes and/or mouth
7. Family member(s) with Fibromyalgia
8. Fatigue, made worse by physical exertion or stress
9. Feeling cold often
10. Feeling hot often
11. Frequent sighing
12. Heart palpitations
13. Hoarseness
14. Increased thirst
15. Low blood pressure (below 110/70)
16. Low body temperature (below 97.6)
17. Low-grade fevers
18. Night sweats
19. Poor circulation in hands/feet
20. Recurrent flu-like illness
21. Shortness of breath with little or no exertion
22. Severe nasal allergies (new or worsening allergies)
23. Sore throat
24. Sweats
25. Symptoms worsened by air travel
26. Symptoms worsened by stress
27. Symptoms worsened by temperature changes
28. Tender or swollen lymph nodes, especially in neck and underarms
29. Tremor or trembling
30. Unexplained weight gain or loss

PAIN
31. Chest pain
32. Diffuse swelling
33. “Growing” pains that don’t go away once you are done growing
34. Headache
35. Inflamed Rib Cartilage
36. Joint pain
37. Lumpy, tender breasts
38. Morning stiffness
39. Muscle pain
40. Muscle spasms
41. Muscle twitching
42. Muscle weakness
43. Pain that ranges from moderate to severe
44. Pain that moves around the body
45. Paralysis or severe weakness of an arm or leg
46. Restless Leg Syndrome
47. Rib Pain
48. Scalp Pain (like hair being pulled out)
49. Tender points or trigger points
50. TMJ syndrome
51. “Voodoo Doll” Poking Sensation in random places

NEUROLOGICAL
52. Blackouts
53. Brain fog
54. Feeling spaced out
55. Inability to think clearly
56. Lightheadedness;
57. Noise intolerance
58. Numbness or tingling sensations
59. Photophobia (sensitivity to light)
60. Seizures
61. Seizure-like episodes
62. Sensation that you might faint
63. Syncope (fainting)
64. Tinnitus (ringing in one or both ears)
65. Vertigo or dizziness

EQUILIBRIUM/PERCEPTION
66. Bumping into things
67. Clumsy Walking
68. Difficulty balancing
69. Difficulty judging distances (when driving, etc.)
70. Directional disorientation
71. Dropping things frequently
72. Feeling spatially disoriented
73. Frequent tripping or stumbling
74. Not seeing what you’re looking at
75. Poor balance and coordination
76. Staggering gait

SLEEP
77. Alertness/energy best late at night
78. Altered sleep/wake schedule
79. Awakening frequently
80. Difficulty falling asleep
81. Difficulty staying asleep
82. Excessive sleeping
83. Extreme alertness or energy levels late at night
84. Falling asleep at random and sometimes dangerous moments
85. Fatigue
86. Light or broken sleep pattern
87. Muscle spasms/twitches at night
88. Narcolepsy
89. Sleep disturbances
90. Sleep starts or falling sensations
91. Teeth grinding
92. Tossing and turning
93. Un-refreshing or non-restorative sleep
94. Vivid or disturbing dreams/nightmares

EYES/VISION
95. Blind spots in vision
96. Eye pain
97. Difficulty switching focus from one thing to another
98. Frequent changes in ability to see well
99. Night driving difficulty
100. Occasional Blurry vision
101. Poor night vision
102. Rapidly worsening vision
103. Vision changes

COGNITIVE
104. Becoming lost in familiar locations when driving
105. Confusion
106. Difficulty expressing ideas in words
107. Difficulty following conversation (especially if background noise present)
108. Difficulty following directions while driving
109. Difficulty following oral instructions
110. Difficulty following written instructions
111. Difficulty making decisions
112. Difficulty moving your mouth to speak
113. Difficulty paying attention
114. Difficulty putting ideas together to form a complete picture
115. Difficulty putting tasks or things in proper sequence
116. Difficulty recognizing faces
117. Difficulty speaking known words
118. Difficulty remembering names of objects
119. Difficulty remembering names of people
120. Difficulty understanding what you read
121. Difficulty with long-term memory
122. Difficulty with simple calculations
123. Difficulty with short-term memory
124. Easily distracted during a task
125. Feeling too disoriented to drive
126. Forgetting how to do routine things
127. Impaired ability to concentrate
128. Inability to recognize familiar surroundings
129. Losing track in the middle of a task (remembering what to do next)
130. Losing your train of thought in the middle of a sentence
131. Loss of ability to distinguish some colors
132. Poor judgment
133. Short term memory impairment
134. Slowed speech
135. Staring into space trying to think
136. Stuttering; stammering
137. Switching left and right
138. Transposition (reversal) of numbers, words and/or letters when you speak
139. Transposition (reversal) of numbers, words and/or letters when you write
140. Trouble concentrating
141. Using the wrong word
142. Word-finding difficulty

EMOTIONAL
143. Abrupt and/or unpredictable mood swings
144. Anger outbursts
145. Anxiety or fear when there is no obvious cause
146. Attacks of uncontrollable rage
147. Decreased appetite
148. Depressed mood
149. Feeling helpless and/or hopeless
150. Feeling worthless
151. Frequent crying
152. Inability to enjoy previously enjoyed activities
153. Irrational fears
154. Irritability
155. Overreaction
156. Panic attacks
157. Personality changes
158. Phobias
159. Suicide attempts
160. Suicidal thoughts
161. Tendency to cry easily

GASTROINTESTINAL
162. Abdominal cramps
163. Bloating
164. Decreased appetite
165. Food cravings
166. Frequent constipation
167. Frequent diarrhea
168. Heartburn
169. Increased appetite
170. Intestinal gas
171. Irritable bladder
172. Irritable bowel syndrome
173. Nausea
174. Stomachache
175. Vomiting
176. Weight gain
177. Weight loss

UROGENITAL
178. Decreased libido (sex drive)
179. Endometriosis
180. Frequent urination
181. Impotence
182. Menstrual problems
183. Painful urination or bladder pain
184. Pelvic pain
185. Prostate pain
186. Urinary frequency
187. Worsening of premenstrual syndrome (PMS)

SENSITIVITIES
188. Alcohol intolerance
189. Allodynia (hypersensitive to touch)
190. Alteration of taste, smell, and/or hearing
191. Odor sensitivity
192. Sensitivity to chemicals in cleaning products, perfumes, etc.
193. Sensitivities to foods
194. Sensitivity to light
195. Sensitivity to mold
196. Sensitivity to noise
197. Sensitivity to odors
198. Sensitivity to yeast (getting yeast infections frequently on skin, etc.)
199. Sensory overload
200. Sensitivity to pressure changes, temperature & humidity
201. Vulvodynia

SKIN
202. Able to “write” on skin with finger
203. Bruising easily
204. Bumps and lumps
205. Eczema or psoriasis
206. Hot/dry skin
207. Ingrown hairs
208. Itchy/Irritable skin
209. Mottled skin
210. Rashes or sores
211. Scarring easily
212. Sensitivity to the sun
213. Skin suddenly turns bright red

Cardiovascular (Heart)
214. “Click-murmur” sounds through stethoscope
115. Fluttery heartbeat
216. Irregular heartbeat
217. Pain that mimics heart attack
218. Rapid heartbeat

HAIR/NAILS
219. Dull, listless hair
220. Heavy and splitting cuticles
221. Irritated nail beds
222. Nails that curve under
223. Pronounced nail ridges
224. Temporary hair loss

OTHER
225. Canker sores
226. Dental problems
227. Disk Degeneration
228. Hemorrhoids
229. Nose bleeds
230. Periodontal (gum) disease

Reconnecting with the world

Having fibromyalgia can mean a physical isolation from the world around you.

Going shopping is no longer something you do for fun, the lights and the noise can cause you problems even before you get to trying things on (all the energy that takes). Then you have the problem of no longer being able to carry the shopping and getting it home, if you do get it home when are you going to wear it as your social life has become none existent. If by chance you have managed to do the shopping and get it home then the fatigue kicks in as well as the pain and for a few hours shopping it may take you hours, days or weeks to recover.

I’m not telling you this to look for sympathy or to make anyone worry this will defiantly happen to them if they have Fibromyalgia. I want to tell people if this is you you’re not alone and if you know someone like this then please be understanding as this is not a choice.

When going out seems like too much effort then on-line support groups and Facebook are a great way to stay connected and share experiences. I have attended a few on-line parties in the last week is been great to feel connected again.

Pain Medication V Pain Killers

The words pain killers give the world the wrong impression. I may be taking this medication every day but I’m still in pain. The medication does not kill the pain it takes the edge off and makes it slightly more manageable so I can do something with my day. If I didn’t take the medication I would not have a life.

I live each and everyday in pain. Reading this may make some people uncomfortable knowing this fact but its the truth. I struggle in pain everyday taking pain medication doesn’t make me a drug addict. I’m not taking them to get high, I’m taking them so I can function and have some sort of life.

I struggle with the simplest of tasks and may need help, this requires me to get over the embarrassment of asking for help so please don’t then question why I cant do that or make a joke of it (as this can be very upsetting).