Missing the everyday

I made it to work today! Even though I was an hour and a half late, I still made it, and that is what counts. I don't think I could have taken another day sitting at my flat, no matter how much pain I'm in. I've cut out the pain tablets as I'm so done with feeling wonky and dizzy and sick to my stomach. I'm just on Tylenol now. It helps, but I still feel pretty weak. I took the bus and subway this morning. I had to wait for a bit, and there was a taxi in front of the stop, and for one second I thought I'd take it, but then I came to my senses and realised what a nightmare that would be, with all the bumps and potholes! I had left a pillow at work from the last surgery and glad I did. My bum definitely needs it. My bosses have been v. understanding, I'm v. lucky with that.

So, here I sit, at the office, still feeling like crap but really wanting to get back to my regular life. (But I do miss all of my mother's yummy home cooking!). I hate boredom and being cooped up, so time to make some plans! Well, not bike riding or anything, but something to get me out and about.

(Again, just want to say how amazing my family and friends are. Even when they are busy packing and then about to hop on a plane to S.A. find time to check in, or so busy with their three kids and birthday parties, ring me to say hi, and those that just have v. busy single lives and still find time to check in regularly. I hope you all know how much I appreciate you! It does mean the world to me, and I just want to say thank you!)

Good news are my bug bites are all gone and no more itching!!! (I probably just jinxed myself).
Bad news is that we've been through about 3 or 4 fishes in the last week. Martin died over a week ago, I got a replacement, and in two days he was gone, so brought him back to the shop, and they gave me a new one. That happened two more times over the last 5 days. I went in yesterday to tell them the latest had that cotton-like fuzz on it and they then mentioned something about air conditioning, and if it had been on. Seems that Bettas are v. sensitive to water temp and even if they're not near the a/c, it can cool the water, then bacteria or fungus grows, and then they're a goner. Wish someone had said something sooner. It does make sense though because Martin had been doing fine until the air was turned on. I think I will wait until the fall to get a new one! I can't take anymore dead fish!

boredom and general icky-ness

Yesterday was quite a day. I had brecky with my parents, then passed out on the couch for an hour or so. I had taken a pain pill when I ate and I guess it hit me pretty hard. It's definitely true that these things build up in your system, because the more I took, the quicker the effect was. When I woke up I took a shower and my mother wanted me to try to walk outside. We went pretty close, just to the food store, but I felt really queasy and dizzy and was wiped out by they time we returned. I ate again because we thought that might help, and then I fell asleep for a few hours. In the interim they had left. I was woken up around 19.30 by the phone and thought that I should eat something. I tried to look at some menus online but still felt ill, so just had a little cantaloupe that was cut up. I tried to sit in the other room for a while but just felt horrid so came back to bed and eventually fell asleep, on and off, for the night. I am glad that I didn't go to work today because I would have been a wreck.

This morning I still felt horrible, even though it had been about 24 hours since I had taken a pain pill! I decided last night that no matter how much pain I was in I was just going to take Tylenol because I hated the haze I was in. After I took a shower this morning and still felt ill, I thought some fresh air might help, so went across the street to Starbucks, where they have outdoor seats (I brought my own cushion - and it was still pretty painful). I was out there for an hour or so and it seemed to help a little. Then it started raining - just my luck. So I came home, ordered some lunch, and made myself eat. Since then just been vegging on the couch, trying to sit on my bum, and feel less sick. I think some of the meds are finally leaving my body. I truly hate feeling like this, like I've no control over my body.

I have to say this is a pretty horrible recovery and I wouldn't wish it on my worst enemy. I can't begin to describe the pain. I have decided I am going to go to work tomorrow and am hoping to make it through the day, with just Tylenol - at least that's the goal. I am beyond bored. It's dull just sitting around with no company, so at least there I will (hopefully) have things to do. I am really bummed (no pun intended) that I will be missing the concert in the park tonight - it's perfect weather! Oh well. C'est la vie.

Pain, drugs, boredom and lack of sleep

Make me pretty loopy. I have been going between Demerol and Ultracet, and there doesn't seem to be much difference between the two.

Thankfully the surgery went well, and the procedure was the "easiest" version that the doctor had outlined. It was pretty quick, only about half an hour. I woke up screaming my head off though. The pain was completely unbearable. The last thing I remember was laying down on the table and the anesthesiologist putting drugs in my IV, and then I woke up in agony. Agony is an understatement. The amount of pain I had was completely indescribable. This was the third worst amount of pain I've had. (It's crazy that I have a running list: the first was waking up from hip surgery in September; the second was when they were doing the surgery on the abscess - both times since the damn resident buggered it up the first time - and didn't put me under). When I woke up and was hysterical they asked if I wanted my mother to come in, and she did. She's amazing, I don't know how she stayed so calm and level-headed when I was losing it completely. Thankfully after what seemed like much begging and pleading and pleading and begging they gave me a shot of Demerol. After a few minutes that finally kicked in, and though the pain was still bad at least my mind didn't seem to care much anymore.

They let me stay there for about half an hour and then pretty much kicked me out, telling me I'd be more comfortable at home. I just wanted more shots of Demerol but they wouldn't give me that. The doctor did give me a script for some Demerol tabs though. I don't remember much about Friday, but what I do was a nightmare. When I first got home I passed out on my bed from the sheer exhaustion of being in that much pain + the pain killers. When I woke up I had to go to the bathroom, and was pretty nervous. I was able to pee but I also saw all this blood on the gauze and it freaked me out as it was bright red. This was the first time I actually realised how they literally taped up my behind with gauze. I was nervous about the blood so my mother said I should call the doctors office. They were not very helpful and just kept repeating that I only needed to call if the pain was very bad (I wonder what they consider v. bad since I was in agony???), if I was bleeding more than normal (again - how was I meant to know what "normal" was for this) and if I couldn't pee. I also asked, as my stomach seemed to be getting a little upset, what I should do if I felt I had to have a bm. The guy said to just take off the gauze and tape and go. Ok, so long as he said it was fine.

My mother wanted me to eat something because I hadn't all day, so I went in to the kitchen to see if I could and all of a sudden my bum decided it was incontinent and let loose. This was pretty gross as I still had that taped gauze all over. What a mess, to say the least. I was pretty upset, not just about the mess, but since incontinence is something that can happen with this surgery. I was so glad my father was out when this happened. I thought all was well, washed up and did a sitz bath and got changed. All for naught it seemed as it happened again. I couldn't believe it. It was probably a good thing I was high on painkillers as otherwise I'd have been freaking out completely. Finally my insides decided to give it a rest and I was able to get sorted out and back in bed. Such fun stuff I tell you! After that I don't remember much. My mother made dinner and I had to go to the table to eat. This required lots of pillows under me. I don't know how I made it through, but went straight back to bed afterwards. Unfortunately I didn't sleep very well and was up all night from the pain. (the last two paragraphs were written later but I wanted to add them so that anyone who goes through this might know what to expect)

Yesterday was a little better than today. I finally slept a little last night but this morning was in agony, probably because I hadn't taken a pain tablet since last night. I'm still pretty out of it from the drugs now, so this might not even make sense.

People don't realise that even if you're loopy and in pain you can be bored out of your mind! Thankfully my mother had been a great sport playing monopoly and scrabble with me to keep my mind occupied. There is only so much bad telly you can watch. I would also like to that my friends for their support before and after, it means so much to me to have that. It seems a little thing perhaps, but when you're going in for surgery it's nice to get that and afterwards it is great to have people call. I guess if you've never been through this stuff you don't realise the importance of what a little phone call can do.

Hopefully I will be going back to work on Tuesday, but I will see how I am tomorrow. Sitting is still incredibly difficult at the moment - I'm not sitting now, just kneeling on the floor.

Ok, room is starting to spin again so going to go lay down.

Stoned

Well, at least that's how I think it would feel, as I don't really know. I had to take a pain pill today - not because of the hip, but my fibro if flaring up big time. Between this crap weather and lack of sleep I feel like I've been run over by a mack truck, who then reversed, did it again, and once more for good luck.
Good thing it's relatively quiet at work because I don't know how I'd pull it off. I actually cancelled my PT for this evening. There is no way in hell that I am going to be tortured by someone else anymore than I am being at present by my own body. Oh well, I guess sometimes you have to just say WTF and take some rest. I just hope the weather improves quickly, and that I get some decent sleep tonight. I hate taking these bloody pills!

Article on Fibromyalgia that is very informative and thorough

Learning To Manage Fibromyalgia Syndrome

Darlene A. Clarke, R.N., M.S.N.President & Founder of the Northeast Ohio Branch of the EDNF. Darlene has Hypermobility Type EDS and Fibromyalgia Syndrome.

Individuals with EDS are often also diagnosed with Fibromyalgia syndrome. Fibromyalgia is a common and often disabling disorder whose cause remains obscure. Fibromyalgia frequently resembles other disorders such as rheumatoid arthritis and lupus. Individuals commonly complain of widespread muscle pain and tenderness, as well as fatigue and exhaustion after minimal exertion. A characteristically high “tender point” is evident. For individuals diagnosed with Fibromyalgia, learning to effectively cope with this disorder is essential to one’s emotional and physical health.

It's morning and as you awake you realize you are exhausted and you haven't even left the bed yet. The thought crosses your mind that for as tired as you are, you may as well have never gone to bed. You barely have enough energy to get out of bed and care for yourself, let alone being able to care for the children, or go to work or school. As you struggle to get out of bed, you realize that your body aches all over and you feel as if you are a 100 years old. You are stiff and can hardly move. What is wrong with you? After seeking one or more medical evaluations, you finally get the answer. Your physician informs you that you have Fibromyalgia syndrome. Such a big word that sounds ominous and must mean you have some dreaded problem. You have never even heard the term before.

So, what is Fibromyalgia syndrome?

Fibromyalgia syndrome is a common form of chronic, generalized muscular pain and fatigue. In some cases, the pain is so intense that it can be incapacitating.

1 Despite that Fibromyalgia does not result in serious, long–term target organ damage; it does have a negative impact on the quality of life similar to that of rheumatoid arthritis.

2 To effectively manage and cope with Fibromyalgia syndrome, it is imperative that one has a clear understanding of Fibromyalgia, its signs and symptoms, triggering factors and how it is treated and managed.

The term “Fibromyalgia” can be broken down into fibro (fibrous tissue), my (muscles), and algia (pain and tenderness). In Fibromyalgia there is pain in the muscles and fibrous connective tissues which comprise ligaments and tendons. Therefore, while Fibromyalgia feels like a joint disease, it affects muscles and their attachments to bone and joint deformity does not ensue.

3 Fibromyalgia can run in families, possibly suggesting an inherited predisposition. To date, the cause of Fibromyalgia is not known. It may lie dormant until it is triggered by an injury/trauma, stress, or a sleep disturbance. There are other theories as to what triggers Fibromyalgia. One theory is that the syndrome is caused by an infectious agent such as the influenza virus. Other suspected causes include extreme physical deconditioning of the nervous system brought on by a lack of exercise, and changes in muscle metabolism that can result in decreased blood flow to the muscles with fatigue and decreased strength the end results.

4 More recent research points to two key chemicals of the Central Nervous System that facilitate the regulation of pain messages transmitted to our brain. These two chemicals are substance P and serotonin. Substance P begins the pain–signal process following tissue injury. Serotonin reduces the intensity of pain signals in the transmission of pain and is very important in sleep regulation. Low levels of serotonin and elevated levels of substance P have been found in individuals with Fibromyalgia. These findings support the theories that individuals with Fibromyalgia have unusually high pain intensity messages transmitted to their brain as well as deficiencies in the inhibition of pain.

5 One clear fact remains: more research is needed on Fibromyalgia. Despite not being able to identify the exact cause of Fibromyalgia, individuals present with similar signs and symptoms.

Signs and Symptoms

Probably the most frustrating aspect of having Fibromyalgia syndrome, as in EDS, is that you “look healthy.” Compounded by the fact that test results are “normal,” it is difficult to convince others that something is wrong with you. Every X–ray and blood test your physician ordered has come back within normal limits. You embark down the path of self–doubt and frustration – is this pain real, or is it all in my head? Why is it so difficult to put a label to the signs and symptoms of Fibromyalgia?

Fibromyalgia is frequently misunderstood and confusing because the symptoms seen in this syndrome are also found in other conditions such as rheumatoid arthritis and lupus. Women are affected more than men and the symptoms usually occur first when an individual is between 20 and 40 years old.1 However, it must be noted that Fibromyalgia can sometimes affect children and the elderly.4 Recent research studies have established guidelines for diagnosing Fibromyalgia based on the presence of certain signs and symptoms.

Pain

The most common complaint from patients with Fibromyalgia is that they have diffuse “pain all over” – almost like the flu. Although in rarer cases, the pain is quite severe and disabling. More often, the symptoms often begin insidiously and may wax and wane in severity. In almost all cases, individuals complain of some degree of pain continuously. The pain is most often worse at “tender points” specifically located on the body. Fibromyalgia type pain generally is worse in the morning and late evening and often is associated with stiffness. Muscle groups that are used repetitively result in an increase in the level of pain you experience.

Fatigue and Sleep Disturbances

Have you ever awaked after sleeping and felt refreshed and rejuvenated? Most likely your answer would be “no.” Immense fatigue is frequently the debilitating aspect of Fibromyalgia. The fatigue may be exhibited as an overall tiredness and lack of energy, or as muscular fatigue and a lack of endurance. In either case, it can be difficult to perform activities of daily living such as caring for self or others, performing household chores, going shopping, or to function effectively at work. Keep in mind that it takes a tremendous amount of energy to deal with having chronic pain and this too can contribute to an individual’s fatigue.

Approximately 90% of individuals with Fibromyalgia complain of moderate to severe fatigue coupled with a lack of energy or the type of exhaustion that is found with a lack of sleep. In most cases, individuals wake up feeling tired even after sleeping all night. While their minds may be rested, their bodies feel as if they never went to sleep. Many are aware that their sleep has become lighter with frequent awakenings throughout the night. Scientific studies reveal that individuals with Fibromyalgia have abnormal sleep patterns and are deficient in Stage 4 sleep – the deepest stage.1,3,5 It is important to note that a secondary Fibromyalgia syndrome can occur with any connective tissue disease (EDS included) and may not necessarily be related to sleep disturbances.6

Central Nervous System Symptoms

As in other chronic illnesses, mood and mental changes can occur in individuals with Fibromyalgia. Many individuals feel “blue” or “down,” although only about 25% are clinically depressed. In most cases, depression and/or anxiety tends to follow the onset of Fibromyalgia symptoms and may be the result of Fibromyalgia and not the cause of it.3

People with Fibromyalgia may also experience numbness and tingling in their hands, arms, face, feet and legs. These symptoms can also be found in other disorders and usually require numerous tests before the diagnosis of Fibromyalgia is reached by a physician.

Other Problems

Muscular as well as migraine headaches are common in Fibromyalgia. Abdominal bloating, pain, alternating diarrhea and constipation are also commonly seen. They resemble irritable bowel syndrome or “spastic colon” in nature. Similar bladder spasms and irritability results in urinary urgency and frequency. The skin and circulatory system are sensitive to moisture and temperature changes resulting in temporary changes in skin color.2,3

Clinical Diagnosis

Currently, no definitive laboratory tests exist to make the diagnosis of Fibromyalgia. Rather, the diagnosis is made by a physician after obtaining the individual’s medical history and performing a complete physical examination.

A hallmark of Fibromyalgia syndrome is reduced pain thresholds at designated tender points, demonstrated upon palpation.2 According to the American College of Rheumatology, the diagnostic criteria for Fibromyalgia includes: a). widespread diffuse pain that has been present for at least three months and b). pain that is present in 11 of the 18 bilateral tender point sites (see figure 1) when 4 kg of force is applied by digital palpation.1,2,7 Recall your response the first time your physician palpated these 18 “tender points.” Did you say “ouch,” flinch, make a facial grimace, and attempt to withdraw away from your doctor or even jump? These are the usual responses elicited by an individual with Fibromyalgia. Frequently, patients are shocked by the level of pain they experience when these areas are palpated. Now that you know how Fibromyalgia is diagnosed, let’s look at the common triggering factors of Fibromyalgia.

Common Triggers of Fibromyalgia

Three common factors seem to trigger a flare in Fibromyalgia symptoms, physical factors, emotional factors and environmental factors. Keep in mind that your Fibromyalgia can become aggravated by these factors alone or any combination of these factors.

Physical Factors

Several physical factors can aggravate your Fibromyalgia. Infections are one type of physical factor that can produce the most profound exacerbation of Fibromyalgia symptoms. The second type of physical factors deal with ergonomics. The positions we maintain our bodies in has a direct correlation to the pain associated in Fibromyalgia. For instance, do you have a job that requires you use repetitive movements all day? Are you required to work in one spot with your arms elevated above your work surface? Do you need to remain in one position (i.e., standing, sitting or driving) for prolonged amounts time? If you answered “yes” to any of the above questions, you will be able to relate to the pain that results from maintaining your muscles in a sustained isometric position for any length of time. Ergonomics also plays an important role at home. It’s often difficult for someone with Fibromyalgia to push a vacuum cleaner, wash walls, paint or prepare meals. These tasks require the use of shoulder muscles to maintain arms in extension at some level in front of our body. What generally happens is that an ache begins in the neck, shoulders and upper back. The ache rapidly turns into pain that elevates in intensity as it slowly radiates up and down the back. You feel as if you can’t maintain your arms in this position any longer, and you quickly return your arms to your sides as you wait for the pain to slowly ebb away. Most, if not all of you, can relate to this all too familiar type of pain.

Emotional Factors

Stress is something that each of us has to deal with on a daily basis. Unfortunately, emotional stress is a prominent factor aggravating Fibromyalgia. We are faced with stressful situations at home, work, school, driving your car on the highway etc. It isn’t difficult to identify situations that aggravate your Fibromyalgia symptoms – that’s the easy part of the equation. The trick is to avoid or attempt to modify any stressful situation.

It is extremely difficult to deal with those situations in which any stressor is unrelenting. These types of situations can present themselves in the home with family members or in the workplace with coworkers or supervisors. In these situations, one must look at not only the circumstance, but how you react to the stressor. Ultimately, it comes down to dividing these stressful situations into two categories: those that you have control over and those you have absolutely no control over. In circumstances that you have no control over, it is imperative that you learn to alter your response to those particular situations. Save your energy for those battles that you can emerge victorious.

Environmental Factors

How many times have you been able to predict the approaching weather without having looked at a weather map? Probably too numerous to count. You feel like you are a human barometer with the ability to predict weather changes before they occur. Most likely you have found that when the barometric pressure drops, it is followed by rain, cold, snow, and fog – all of which aggravate your symptoms.

Many individuals with Fibromyalgia report that certain types of artificial lighting, cold drafts or irritating noises often result in a flare of their muscle pain. When was the last time that you were able to enter a pool that wasn’t heated? Just a guess, but it was probably many years ago. Most individuals with Fibromyalgia do not tolerate swimming in cold or cool water. We are usually found in the heated pools that others say are “too hot to swim in” or in hot tubs. The goal is to determine what factors aggravate your Fibromyalgia and either eliminate them if possible or at least modify them. Now that you know what factors can trigger your Fibromyalgia, let’s look at how it is treated and managed.

Treatment and Management

Since Fibromyalgia’s definitive cause is not known, current treatments are focused on relieving painful symptoms, not necessarily curing them. Additionally, the treatment program prescribed by your physician will be individualized to address your specific needs.

Numerous treatments have been employed over the years for Fibromyalgia. No one method has been entirely successful, but several methods will be prescribed by your physician in an attempt to control your symptoms. A sense of overwhelming relief comes with the validation of your symptoms and a diagnosis. Just knowing the name of your condition will not be enough though. Your physician and healthcare team will educate you and your family about Fibromyalgia. Specifically, you’ll be informed about your prognosis, possible causative factors, the aspects of treatment and specific body mechanics techniques. This education will prove invaluable to you. If you are taught about what to expect and how to deal with flare–ups, you will be able to control your Fibromyalgia. The goal of education is to moderate the effects of Fibromyalgia on your life. Only then will Fibromyalgia not become your entire life.

Medications may be prescribed by your physician to control pain and improve deep Stage 4 sleep. If pain is prominent, your doctor may prescribe a low dose of an analgesic or nonsteroidal anti–inflammatory drug, although most nonsteroidal anti–inflammatory drugs are marginally beneficial and carry the risk of side–effects that outweigh their benefits. Therefore, you will be most likely instructed to use over the counter medications such as acetaminophen, aspirin or ibuprofen to relieve pain and reduce stiffness. If you are currently on a nonsteroidal anti–inflammatory drug to help manage your EDS, your physician will likely instruct you to take acetaminophen, not ibuprofen or aspirin, to control your pain.

To improve Stage 4 sleep, your physician may prescribe low doses of tricyclic antidepressants (Elavil, Sinequan) or the muscle relaxant cyclobenzaprine (Flexeril). These drugs are structurally similar and they block the re–uptake of the neurotransmitters that regulate deep Stage 4 sleep.3,8. These medications carry the risk of potential side–effects which include: drowsiness, weight gain, dry mouth and constipation to name a few. Do not be discouraged if you do not respond to the first medication(s) prescribed. Your doctor may need to adjust dosages or change drugs to achieve an improvement.

Individuals with Fibromyalgia should practice good sleep hygiene to promote sleep. Bedtime rituals can relax you in preparation of sleep. These bedtime rituals can include: taking a warm bath or shower, reading a novel, watching a relaxing television program or listening to soothing music which can promote sleep. Attempt to follow a regular sleep schedule and go to bed at the same time each day. Sleep eight hours nightly if possible. Avoid alcohol, caffeine and tobacco before retiring – they will disturb your sleep. Also abstain from taking midday naps.

Exercise is a key element in Fibromyalgia management. Your physician will recommend that you slowly increase your aerobic fitness with structured, low impact activities such as swimming, water aerobics, walking, or riding a stationary bicycle.2,3,7,8 Research has indicated that aerobic exercise improves sleep, enhances endorphin release and has antidepressant effects.2 It is important to check with your physician to ensure that the exercise program you have chosen is not contraindicated in your specific type of EDS. Remember to always stretch your muscles before engaging in any aerobic activity. Increase your exercise program gradually to reduce the chance of injury. As you continue to exercise, you’ll notice that you feel better, have more endurance and experience a reduction in Fibromyalgia symptoms. It’s worth the possible pain and fatigue felt initially to achieve these end–results.

Always practice proper body mechanics and apply ergonomic principles at home, work and at rest. These techniques will prevent injury and reduce flare–ups of Fibromyalgia symptoms.

Your doctor may prescribe various physical therapy treatments. Possible treatments include: massage, heat or ice applications, ultrasound or whirlpool therapy and microvoltage electrical stimulation. These are all passive physical therapy techniques with varying results from individual to individual. These treatments are usually prescribed for flare–ups and are employed for short periods of time.3,8

Taking Control of Fibromyalgia

You can engage in several actions that will help you gain control of your Fibromyalgia. First and foremost, listen to your body. Identify those triggers that aggravate your symptoms and then avoid or at least minimize them. Get your stress level under control by practicing relaxation techniques. Relaxation techniques are primarily effective for chronic pain and have many benefits. Relaxation techniques enable you to reduce anxiety, pain and stress, reduce muscle tension pain and relieve the helplessness and depression associated with chronic pain. Despite having chronic pain and fatigue, learn to develop a positive attitude. Remember that if you have a constant negative attitude, your Fibromyalgia symptoms will exacerbate. Look for the good in every situation – it’s there, but you may need to look closely.

Eat healthy and avoid fat in your diet. Excess weight is detrimental to your body and can aggravate your symptoms. Eating properly also maintains your health and avoids illness. Keep in mind that an illness (i.e., cold, flu, bacterial infection etc.) can be a triggering factor for your symptoms.

Educate yourself, family and healthcare providers about Fibromyalgia syndrome. Remember that knowledge is a powerful weapon in coping with any chronic illness. Knowledge also helps you to take control of your Fibromyalgia and reduce the exacerbation of its symptoms.

Lastly, seek support from others with Fibromyalgia. Check with your physician, healthcare institution, and within your local community for a Fibromyalgia support group. It is extremely beneficial to receive support and understanding from others who have the same type of problems from Fibromyalgia as you do. Connecting with a support group also helps you and your family to cope with having a chronic illness. And who knows, maybe someday you will have the opportunity to offer support to someone else just diagnosed with Fibromyalgia. I guarantee it will be one of the most gratifying and fulfilling experiences of your life.

Conclusion

Receiving a diagnosis of Fibromyalgia syndrome is an important first step in managing this condition. It is not the last step though! It is imperative that you have a clear understanding of Fibromyalgia, its signs and symptoms, triggering factors and treatments. Learning to effectively cope with this disorder is essential to one’s emotional and physical health. It is only then that you will be able to manage your Fibromyalgia and prevent it from becoming your whole life. While there isn’t a cure for Fibromyalgia, there are treatments that are effective in managing its symptoms. There is life after finding out you have Fibromyalgia. Tomorrow will be better and holds the possibility of a cure!

References
1 Fan, P.T., & Blanton, M.E. (1992). Clinical features and diagnosis of Fibromyalgia. Journal of Musculoskeletal Medicine, 9(4), 24–42.

2 Wilke, W.S. (1996). Fibromyalgia: Recognizing and addressing the multiple interrelated factors. Postgraduate Medicine, 100(1), 153–170.

3 Arthritis Foundation, Inc. (1995) Fibromyalgia Syndromes, 1–12.

4 Dunkin, M.A. (1993, September–October). Fibromyalgia: Out of the Closet. Arthritis Today, pp. 24–28.

5 Dunkin, M.A. (1997, September–October). Fibromyalgia: Syndrome of the ’90s. Arthritis Today, pp. 41–47.

6 Ignatavicius, D.D., Workman, M.L., & Mishler, M.A. (1995). Medical–Surgical Nursing (2nd ed.). Philadelphia: W.B. Saunders Company.

7 Goldberg, D.L. (1990) Fibromyalgia and chronic fatigue syndrome: Are they the same? Journal of Musculoskeletal Medicine, 7(5), 19–28.

8 Sherman, C. (1992) Managing fibromyalgia with exercise. The Physician and Sports Medicine, 20(10), 166–172.

One step forward, two steps back

At least that is what it feels like at times. I have slept the last two nights but only because I've taken my "magic" pills. I am trying to get as much sleep as possible to get ready for next week.

My mother and I did a 'test run' to the office on Friday. I was originally going to do it during rush hour, but since I hadn't slept that night and was so sick from the pain killers, it was delayed for a few hours. We ended up leaving about 12.10 pm from the flat. I had to walk one block to the crosstown bus, take that to 6 long blocks to the Park, and then switch to a downtown bus. There was a lot of traffic from road works. We finally reached my stop, got off and walked a block and a half to the office. The whole trip took over an hour. I was pretty wiped out when we got to the office, but at least I made it. I waited there for a bit to see one of my coworkers who was out to lunch, and also thought to ring Dr. Kelly's office to see if they had the surgical report yet. After a couple of calls they finally faxed it to me. I will see if I can post it as the PDF or will have to retype it all. I was also extremely relieved to find out that my bosses will be out on Monday and that M arranged for me to work from home. It felt like a stay of execution - not that work is horrid, just getting there at present is quite a workout.

After we left the office we stopped to get something to eat, I had just a little as I was still queasy from the pain meds, and then we took the bus up Madison. It was not even rush hour but the bus, when it finally did show up, was absolutely packed. No matter when I take this bus line it seems to always be delayed and always be packed like a sardine can. I had to ask a not very happy looking girl to get up so I could sit down. Unfortunately my mother had to stand and I felt so bad, she was getting jostled all about. Some woman decided to step on my right foot with all of her weight for a minute or so, she seriously wouldn't move, put all of her weight on it, till I finally let out with an expletive! My toe throbbed for over an hour. It's like constantly getting beat up, no matter how hard you try.

Yesterday was a bit of a late start, but we didn't have any place to go so it was ok. I had some pictures from my Gran's flat that we needed to hang so we did that. A friend was meant to come by but never heard from her so we went across the street to Starbucks and sat outside for a couple of hours, then I tried to walk around a little bit. I am still wearing my brace as I feel much more secure with it and the doctor told me that I should wear it as long as I feel so. We ended up going to a German restaurant near me, and even though it was early the place was very crowded as it is Oktoberfest. It was pretty good but very expensive. And it also delayed my return to my flat. I normally love my flat but am so tired of it.

Think I will go eat some breaky and do my PT. I have to go shopping later to get lunch supplies for the week also. My mother is going home today and I am stressed about that. She has been a life saver these last few weeks. I wish I had some dosh so I could send her on a well deserved and earned holiday, this year has been rough for her, not even including my surgery. I should start playing the lottery! My friend T is meant to stay with me tonight and for at least part of the week, so I won't be completely alone which is good. I am getting around better in the house but I still feel better if someone is around for the time being. It's all so stressful.

On one other note, this has been a very difficult recovery, not just the hip itself, but all of my other body issues (hands, shoulders, etc). I would like to thank those people who spent time with me. Even a brief visit was such a welcome break from the monotony of this slow recovery - so just wanted to say thank you.

Catch 22

I am going off of my mind! I am so bloody bored I could scream. The problem is anytime I try to move around more, my hands and hips and shoulders get very upset with me and start to complain in intense anger. There is no winning in this situation. I did cave and take another pain pill today, though it was the first time since Friday.

I had to go back to the dentist today for some work and he shot me up with three injections in my mouth! I am the queen of torture at this point. After we went to get my new specs and then I was dreading coming home so much I rang one of my close friends who happily had just gotten home, so we popped over there for a nice visit.

I took another magic pill last night and slept fairly decently. I have been having the most bizarre nightmares for the last few weeks, it must be all the stress and drugs. But at least I got some sleep so I won't complain.

My mother and I have been trying to suss out how I can do all sorts of 'little' things that you take for granted by myself, as next week I have to return to work and will not have her around to help. You don't realise how much it truly is the small basic things. For example, getting a sock on my right foot is a nightmare. Thankfully my mother found this sock aid pull on she had bought for my dad when he had hip replacement surgery and it seems to work. Washing and drying my lower legs is another difficult task. I finally sussed out how to get lotion on my lower right leg - with my left foot! I'm getting quite creative. Quite a learning experience for sure! I keep trying to do more and more myself without overdoing it at the same time. Opening doors though is one thing that is very difficult, so not sure how that is going to work. Oh well, onward and upward as they say.

pain is getting worse

I am not sure why the pain is getting worse, but it seems to be. Yesterday I took it easy and barely did anything other than my rehab routine. I iced with the GameReady for a while, did the CPM for two hours and then after dinner did my PT. The exercises hurt even more than the first day I had to do them. Agony was an understatement.

After watching telly for a bit with my mother I did another hour of the GameReady hoping to numb my leg up before bed. We then decided I should take a second pain pill, hoping this would help me sleep through the night, or at least most of it.

I passed out about 11.30 pm and then at 12.30 am woke up with a start! I have no clue what woke me but whatever it was made me jump, which is not good for my hip at all. I have been getting leg spasms, supposedly from the psoas release, and it's driving me mad. I fell back to sleep and then slept till about 4.45 am. After I go up to go to the loo I was in pain so decided to take two more pain pills hoping I'd pass out again. Sadly this was not the case. I would sleep for a few minutes and then wake up again, this went on till about 8 am. I was feeling (am still actually) incredibly wonky from the pills so just vegged for a bit and finally just ate something. I'm now thinking the two pains pills wasn't the best idea. I think between the pain and not being able to move around whilst I sleep is what is keeping me up at night. Normally I sleep like a wild woman, all over the place and wake up in pretzel-like positions. Sleeping on my back is just making me ache all over even more. I tried sleeping on my left side again with a pillow between my legs but that doesn't seem to work for me.

sleepless in new york

Last night was Kol Nidre services. I always find the Kol Nidre prayers very moving and I try to attend every year. This year I was hoping to just make it through the first part of the service since I just had surgery this week. Miracle of miracles, somehow I made it for two hours sitting on a folding chair with my brace on. At that point I was hoping to make it through the rest of the services, but my hip was getting the better of me and I had to concede it was time to go home. I don't know if this made the rest of my night worse or if it was just a coincidence.

I decided I would go to bed later last night and by this hopefully sleep longer. Unfortunately my plan did not work. I was up around 4 am and even though I just laid in bed for two hours, sleep did not come. I was in pain when I woke up, but also achy all around as my body does not seem to like sleeping on my back. I did try for an hour or so to lay on my side with a pillow between my legs, but that didn't seem to help either.

After two hours of nodding off for a few minutes then waking again, I gave up and put the telly on. There is absolutely nothing on the telly that early on a Saturday morning so I just left something random on and was hoping to drift off, but I had no luck with that. By 8 am I was starving and had to get something to eat. Not wanting to wake my mother, I hobbled into the kitchen and was going to get some challah. My mother heard me though and followed me in. (As a side note, I know it's Yom Kippur but for medical reasons I'm not meant to fast).

After having a small bite I went back to bed and my mother came in and watched some telly with me. Again I just couldn't seem to drift off. Finally by about 10.30 or so I tried to fall asleep but kept having spasms in my legs, especially the right one. I was told this might occur from the Psoas release, and had been given muscle relaxers for it. I usually take one of those at night but I couldn't stand it so took one then, and also we put on the GameReady. I believe I finally fell asleep for a bit on and off till about 1pm.

I'm still knackered but at least took a shower. My mother had to go get me some more bandages, and when she gets back I will do the CPM machine and then my PT. That's the plan at least.

almost 48 hours after...

This has been quite an "adventure". I will be as detailed as I can for now as I've just popped another pain pill before I start to hurt like hell again. Last night was rough.

In chronological order:

I set my alarm for 4.30 am on Monday as I was told to report to the hospital at 5.45 am. This turned out to be completely needless as I went to sleep around 8 pm on Sunday, woke up about 12.30 am and could not for the life of me get back to sleep. I've never been a good sleeper in the best scenario, so this was really no surprise to me. The worst part of no sleep was the fact it was making my fibromyalgia flare-up worse. Lack of sleep and stress are two of my three big triggers.

After I took a shower and put my pj's on (yes I wore pj's) we took a taxi to HSS around 5.15 am and were the first people to arrive in the ambulatory surgical waiting area. I filled out some forms and then waited for a nurse to call me to the back area. It was freezing cold in the waiting area so I couldn't sit still. Around 6.15 am I still hadn't been called so I went to the bathroom. Of course that was when the nurse came out to get me. I happen to be someone who wakes up every night to go to the loo. It doesn't seem to matter how much I drink or what I drink, but I invariably wake up around 4 am every night. This was no different that night other than I was awake already, so when I went to the bathroom I really didn't have much left over if you know what I mean. My mother came to get me and I went to follow the nurses to the back area. It was cold in there too, though not as bad. The rule is that they need you to pee to take a pregnancy test. I know there was no way I was unless it was immaculate conception, but the nurse insisted. I explained to her the situation and said that she would hook my IV up early as that would help.

Then the nurse asked me tons of questions, all of which I had already filled out on various forms. Redundancy was the word of the day it seems as this went on with every new person I met. My nurse was very nice but I think my small veins intimidated her. After her having one go on my right hand for the IV, she decided to get the "pro" in. Personally I think she should have done this at the beginning because she kept looking at my hand and saying how small the vein was and seemed pretty nervous about it. At least she only had one go though. I've had people try over and over when it was obvious they didn't have what I call "the touch". My nurse sent in the "pro" who definitely knew what she was doing, you could tell when she looked at my veins in my hand that this was going to be easy for he, which was a huge relief to me. She got it in one go, though I did think my arm was going to fall off because of how tight she put the tourniquet on. They put the drip on high so I would be able to go to the loo quickly, and that worked as I was able to give them a small sample, which thankfully was enough.

I had requested a specific woman anesthesiologist which was ok'd by her office and Dr. Kelly's office, but it seemed that she was busy elsewhere. I was a bit worried because the last anesthesiologist I had was a man who completely butchered me. Dr. Kelly came in to sign my leg and we went over a few things, and he reassured me that all the anesthesiologists were great at HSS. I was still weary but then a very handsome one walked in with a great sense of humour, so surprisingly that made everything alright! Funny that :-)


The OR nurse had come in to go over everything paper wise one last time. He was nice but I could barely understand a word he said, I don't know if it was because I was exhausted or he had a very thick accent. Either way we managed to get everything sorted and then we walked down to the OR. The OR was freezing as well, and the last thing I remember was the cute anesthesiologist telling me he was putting sedation in my IV and the nurse putting a nice toasty blanket on me.

I really do not recall much about post-op initially other than pain. Lots and lots of pain. I do remember telling anyone who would listen that I really, truly love demerol and they should please keep giving me some. Anyone who knows me is aware of my dislike for pills, and pain pill are usually something I stay away from as they make me loopy and I hate loopy, but it's amazing the transformation into addict I become after surgery. At some point I maxed out on the demerol so the nurse had to send a message to the handsome anesthesiologist to ask him if I could have a pain pill, which thankfully he said yes. I believe it was around this time that a very nice "helper" came over to try to convince me to eat something. I'm not much of an eater to begin with, and hospital food really doesn't make me want to eat more, so we finally agreed on some sort of roll with butter, and orange juice. This didn't seem to be a plan my stomach agreed to as after I had one bite I was nauseous. Thankfully that passed or I passed out, who can remember. At some point they put me in the CPM for an hour. I remember crying in agony at first. My mother was there, but then they told her she could leave for a while because I'd be on that for an hour. I was not happy about that, so kept bugging the nurses. After the CPM my mother was not back yet and I had to pee desperately, so the nurse said that I should get in a wheel chair to go to the loo. Earlier I had used a bedpan and that was bloody difficult just to move my hip a bit, so I was not too keen on her idea of actually moving my whole body. She insisted though and I suffered immensely. I'm sure she was doing her job but I doubt she was ready for the level of my agony and my incredibly talented way of letting everyone in the universe know of it. The only thing I can remember from getting me to the chair from the bed was me crying so hard I could not see a thing. The nurse did bring me a whole box of tissues though because of my crying. I couldn't stop. I've been through many surgeries and even my four wisdom teeth being removed, and anyone who has TMJ and has had to do that knows how painful that is. This pain though surpassed all others combined. I still don't know how I made it through. The nurse and the pt took me into the loo and helped me the whole time, but I'm sure the people out in the waiting room were able to hear me screaming in pain. When we opened the door to go back to the hall my mother was standing there and what a look on her face! She looked in as much pain as I was feeling. After this charming trip, they moved me into "phase 2".

In phase 2 they want you to sit in a chair instead of lying in a bed. The PT and nurse both agreed that it was best to leave me in the wheelchair and not even attempt to move me into the chair. This was a great idea because I had no strength to move as well as a huge amount of fear in doing so. I sat there for a while, still I had no concept of time, and then the PT decided it was time to get me walking on crutches. Somehow I managed to walk down one side of the room, and actually climb up their little practice stairs but it's all a blur to me. The pain had taken over my whole body so my brain had all but turned off completely. I said to the PT that a hip replacement would have been easier and she said "oh absolutely".

Finally I was approved to go home, it now being about 4 pm or so. We waiting downstairs with all my new toys for a cab. After we finally got one I thought going in the front would be easier. I don't know if this was a good idea or not, but I just wanted to get home so I could take another pain pill. The cab ride was horrid, every bump made me want to scream. Getting out and into my building is a fuzz to me as well.

I do realise that I've been whinging a bit about the pain this whole write up today, but i have to say that this is the worst most painful thing I have ever gone through. My poor mother is wiped out already. I asked her how she was going to make it three weeks with me if she couldn't handle a day and a half. Hopefully I will improve a bit each day so will not be as reliant on her. I did try to go to the loo last night myself when she was sleeping. I actually did really well, until I tried to get back into bed. I really hurt myself doing that and was a wreck, my dad actually heard me crying and woke up my mother. She was so tired she was in a very deep sleep. The whole point was to try to not wake her, but man was she mad at me for trying to do it myself.

Today I get to take a shower! I don't know how I'm going to get into my shower as it's not the easiest one, but I am determined. And this afternoon I have PT. I am not looking forward to trying to get into a cab again that is for sure.

I will write about what was actually done later as I am exhausted now from all of this typing.

The countdown is on

Today has been even more busy than anticipated. I knew it would be hectic because it's my last day at work for three weeks, but it's been non-stop talking to doctors, assistants, nurses, medical equipment people, etc.

First of all I received an email from Dr. Davis' (the genetic dr) assistant. I had emailed her on Wednesday after the echo to let her know how it went. Dr. Davis is out today so hopefully will hear about the report early next week. She also decided to arrange for the biopsy, so her assistant had to send me some forms to sign off on. I am relieved she's decided to have it done now as it will be one less cutting episode for me. I had a biopsy on my shoulder once and it was not an enjoyable event. So one less thing for me to deal with, yippee! She also informed me that my prep on Monday was scheduled for 7.30am and surgery for 8.00am. It helps to have insider contacts! I am very relieved that I am the first surgery scheduled.

After my chiro appointment (have I mentioned how much I love Active Release Therapy?!?), I came back to work and had two messages waiting for me. One was from a nurse at HSS and the other from biotech regarding the Game Ready unit.

First I rang the nurse back at HSS. She went through the typical items: no food or water after midnight, wear loose clothing, no jewelry, and confirmed that someone would be coming with me. Then she said I had to arrive at 5.45am! I couldn't believe it. What can they possibly do with me for over two hours. But I guess I shouldn't complain, I wanted to be the first surgery of the day. The nurse also said I should be going home by noon. I'm not holding my breath about this statement, we'll see if she was right. I know how things can get delayed in hospitals all too well.

Next I rang back the biotech lady. Just as a note, Game Ready (GR) units are not covered under medical insurance, as they feel you can just use ice packs and don't need the GR. This would be great if ice packs would stay in place and would apply compression, but they don't. It's just a sneaky way for the insurance companies to get out of paying for something that they really should cover! The lady said that I need to pay for it now and it would be at the hospital, so that's all sorted. I also had her fax me the receipts so I could send it into my FSA plan, I figured one less thing to do after surgery, and at least now I'm not loopy on pain meds. Plus I would like to be reimbursed as soon as possible. This item costs $295 for 21 days!!!

So I think that is as up-to-date as I can be for the moment. My next post will probably be after surgery, so have a great weekend!