When she was diagnosed, she was `19 years old in college. She had to drop out. This is the short version of her symptoms:
My daughter states: “Pain is bone deep, searing hot spikes that wave over my back, hips and back of my legs. Often I feel hot when it’s cool and too cold when its warm, I cannot regulate my body temperature. Its strange but I’ll wear summer tops in the winter or sweater when everyone else is very warm. Stiff pain and weakness or soreness in my throat muscles and jaw occur so then it is difficult to sip a cup of tea or swallow food. A weird numbing occurs in my face and I experience skin sensitivity. Except when I have migraines which trigger other symptoms.
Deep tissue pain happens on the bottoms of my feet. Its like walking on knives or blisters — carpet can feel like gravel or sandpaper. The top of my feet will get sudden stabbing pain that shoots between my toes. Its very painful and difficult to walk. Sensation of swelling start in my ankles and knees. Washing my feet in hot water and rinse in cold can help.
My hands can no longer draw in detail and I quite doing bead work. Hands are painfully stiff and can go into my wrist or even shoot up my forearms. I drop things that I am holding or cannot pick up a cup. Most times it feels like tendrils of sharp deep pain moves like fire licking up my arms. Nerve pain and muscle fatigue often occur at the same time.
Fibro heightens ones senses. Sensitive to sound and light. I visualize a bar in my head when I am out and watch these bars go up into a red zone. I try to leave before I get anxious and physical symptoms are triggered. It’s harder to cope with light, movements and sound. I am easily startled and cannot tolerate the overwhelming pain from clanging dishes or pots or trucks driving by our car.
Sometimes the pain moves like a lava lamp through out my muscles, changing locations, direction. In contrast, the slow burning pain in my back is localized and nags me all day. Odd that sharp deep tissue pain feels cold to white hot in my knees and hips or any joint. Stabbing pain in my sides keeps me from straightening my back and I walk hunched over,very slowly. If pain starts in my shoulders, I cannot straighten upright either.
The pain is deep jabbing and sometimes turning to a numbing while fatigue sets in. It makes me anxious, and eventually leaves me tired and lethargic. Pain would usually in my lower back spreads around my abdominal setting off painful IBS.
I cannot sleep well. Often I am energetic at night instead of the morning hours. It takes most of the day to wake up and not feel so tired. Dropped in the middle of a very confusing, alien world, I feel like I just emerged from a deep pool. That is the Fibro fog which gets worse with the nerve pain. It’s infuriating that I forget things or cannot keep my mind on track. It takes a long time to pull out of a fog to where I cannot decipher where I am or what I am doing. Its very disorientating.
If I exercise, I need to rest two days before trying again. My muscles do not recover well from stress. Its frustrating as I used to stay on an Elliptical for 45 min. Now I am lucky to stay on for 5 minutes otherwise it is hard to breathe.
At one time the pain would abruptly escalate to a level 9 or 10 (being the worst). My mom would call the hospital as I was screaming from unbearable pain throughout my body. It is like having all of the extreme pain collectively happens at once. It is too intense to comprehend at that moment. My mom tells me I screamed for all the time it took for the ambulance to arrive and get to the hospital. My body would shake and I was clutching the side of the couch. I don’t remember after its all over.
The hospital got tired of seeing me almost every week, so they gave me a prescription for Toradol shots. It works; I learned to give myself a shot. I also have Tramadol but the Pharmacists tell me its a dangerous drug. I’d like not to have to take Tramadol as it doesn’t do that good of a job anyway. I’m given Flexeril at night for muscles and Tzanidine for the day. Lyrica did not work. I cannot take the anti-depressants as I can become more anxious or depressed.
I hate this disease – it has devastated my hope for a life. My drive and motivation is constantly challenged. Some days I do not have it in me to fight. I don’t want pity from others. I need validation that what I have is real but people are very poor at empathy. I am isolated by this intense pain. Society is not interested in making friends with sick people. I am angry at this formless thing that hurts me while I sleep or awake. I cannot even defend myself and cannot even choke it.
My therapist advises me to find ways to distract and not focus on this disease because it can consume my mind so easily. It takes discipline and practice to do this and I still work on it.
I do not eat wheat products. Gluten free has helped reduce the IBS symptoms. I lost a lot of weight but even so, the unbearable pain keeps me at home.
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