Sleep disturbance is often listed among the symptoms of fibromyalgia sufferers. Although the connection has not been proven, evidence suggests that it is highly likely that the link between sleep and pain is strong.
In a case study cited by the National Sleep Foundation, regarding the relationship between sleep and fibromyalgia: “researchers selectively deprived a group of healthy middle-aged women of slow wave sleep for a period of three days.” The women all reported that they suffered a decreased tolerance of pain, with increased levels of both pain and discomfort: “suggesting that such sleep disruption may play an important role in the development of fibromyalgia symptoms.”
It is, therefore, recommended that fibromyalgia sufferers maintain a regular sleep schedule; seeking treatment for any sleep disorders.
Throughout March the Sleep Council is promoting National Bed Month – “A month-long celebration of a good night’s rest.” Reminding us all of the importance of getting a good night’s sleep, we encourage you to evaluate your own sleep regime and try out a few of the tips below if are having difficulties dozing off:
Relax and unwind Taking a warm bath before bed can help you to unwind from the day’s stresses and, accordingly, relax more easily into sleep. Other soothing activities that may benefit you before bedtime include listening to calm music, reading a book, or meditating.
Minimize distractions Ensure that your bedroom is free of distractions, such as any light leaks or a tv blaring in another room. Face your alarm clock away from your bed and limit any other light or noise sources that may irritate or prevent you from fully relaxing. Check the temperature is not too hot or cold and adjust your thermostat accordingly. A quiet, dark, and cool space provide the optimum conditions for good rest.
Accessorize! Make use of accessories such as earplugs or an eye mask if you find yourself sensitive to noise and light during your sleep.
Find the right bed for you Ensure that your bedding is comfortable and that your mattress is giving you the right sort of support. Which magazine has put together some helpful guidelines here?
Take your mind off things Clinical psychologist, Dr. Mary Rose, recommends that you should leave the room if you are finding it difficult to fall asleep through stress or pain: “Don’t lie in bed, worrying and stressing. Get up, and go to the other room. When you’re calmer, relaxed, feel tired, go back to bed.”
Avoid too many naps Where possible try to keep a regular sleep schedule, avoiding napping too much during the day. “A lot of patients have circadian rhythm problems. Napping can throw you off. Any sleep during the daytime will be taken from your sleep at night” says Dr. Rose.
Reduce your caffeine intake Try not to consume any caffeine from the afternoon onwards: as it works as a stimulant it will affect your ability to settle. If you are craving a hot drink try a relaxing herbal tea, such as chamomile or peppermint.
Gentle exercise Regular exercise has been said to both aid good sleep and improves symptoms of fibromyalgia for some sufferers. There are plenty of good links to simple “fibro-friendly” exercise routines on the internet.
See a Doctor If sleep disruption has become a serious issue for you and you feel that you may be suffering from a disorder, such as insomnia, you should consult your GP for further advice.
Living with a chronic pain condition, such as fibromyalgia, can be difficult enough in itself but, when it comes to relationships, it can also cause additional complications. Aside from the pain associated with fibromyalgia, the illness often has a negative impact on the patient’s emotional well-being.
The combination of these two elements alone can place an understandable strain upon both partners in a relationship. In fact, a study published by the US National Institute of Health concluded that:
“In addition to physical impairments that are well documented among individuals with fibromyalgia, fibromyalgia can result in a substantial negative impact on important relationships with family and close friends.”
Some of the relationship pressures described by those suffering from fibromyalgia include:
From the perspective of someone whose partner suffers from a chronic pain illness, the difficulty of watching a loved one go through pain and suffering (as well as feeling the impact of the associated negative emotions) can also be challenging: as one partner of a fibromyalgia sufferer (known as ctc315 on the related fibromyalgia community chatroom) details:
“My wife is a wonderful, loving woman, but sometimes she just is angry, kind of like a PMS or Menopausal thing. It is a side effect of the Savella and I know this and I make allowances for her disposition. Of course, she always apologizes afterward, but it can be quite challenging.”
On an internet community discussion board relating to the subject of “living with someone with fibromyalgia”, the following fibromyalgia patients summed up a few of the difficulties involved in a relationship where chronic pain plays a factor:
#1 ISSUE: “It’s not that he doesn’t believe me (though that took years) but I still have to ask for each little thing, and that is very draining. It just doesn’t occur to him.”
#2 ISSUE: “With my gent, he sometimes wants to go, go, go, and doesn’t really understand when I say that I need to stop.”
#3 ISSUE: “I shut him out, I get paranoid he doesn’t believe me, I get upset because I want to do more, then I get angry that I can’t do more. I feel like I’m letting him down by not getting better faster.”
In summary, two major factors that may place particular stress on a couple, where one partner suffers from fibromyalgia are
#1 LACK OF SUPPORT: Fibromyalgia can be difficult to diagnose, potentially causing the strain of a lack of support being felt by the sufferer if they don’t feel that their partner is convinced by their symptoms
#2 UNPREDICTABLE SYMPTOMS: The symptoms of fibromyalgia may vary from day to day. This may add additional pressure on the relationship in terms of forward planning for shared time together, as well as the unpredictability of moods and pain levels
In 2010, research was undertaken by the University of Missouri, investigating: “the interactions of married couples that include one spouse who has been diagnosed with fibromyalgia or chronic widespread pain”. As Christine Proulx, Assistant Professor of Human Development and Family Studies explains: “fibromyalgia is very hard on both spouses because their lives are changed dramatically.”
So, if you are in a relationship and suffer from fibromyalgia, what steps can you take to help your partner to understand and support you more effectively? We’ve put together the following three tips to help you out:
#1 EDUCATE: Try to inform your partner as much as possible about the nature of your illness. Share relevant articles and websitesabout fibromyalgia with them, and describe how your own particular symptoms can affect your mood and pain levels
#2 COMMUNICATE: Let your partner know when you are having a particularly tough day and calmly explain why certain tasks may be more difficult/unachievable for you. Try to refrain from taking your pain/frustration out on your partner as we often, unfairly, take things out on those closest to us when we aren’t feeling our best
#3 THINK POSITIVELY: If unavoidable symptoms prevent you from undertaking daily tasks, or a planned day trip, try to remain positive and find a way to work around the issue. For example, calmly explain to your partner the reasons that you cannot keep to the existing plans, and work out if it is possible to reschedule for a future date, once the flare has subsided
It’s important to remember that living with fibromyalgia does not mean the kiss of death for your relationship by any means! Love, respect, patience, and making time for fun are all keys when it comes to any long-lasting and happy partnership.
Happy New Year! I hope everyone had a super spectacular stress free holiday season.
So sorry that I disappeared but it’s been a rather extended round of not quite major and not quite minor flares… hmm maybe I’ll call it a “round” of flares.
No, I’ve got it! The spinning wheel of stress n’ pain; spin it while you sleep, and wake up in the morning to a stressful, painful SURPRISE.
Not all bad though, was busy with Christmas which I mostly did get to enjoy and I’ve been busy working on a secret project. It’s been fun but the stress has knocked me for a loop (ok so really, it’s been many loops). Hopefully tomorrow the stress ends, and I can start to work on the fun part. I’ll get back to you on that.
Have I told you lately how much I blooming hate the agony that is typing? Anyway, I think maybe I’m whining a wee bit too much. Pretty sure that isn’t what you’re wanting to read. So, enough of that!
I did want to say a little more about stress though. I know you’ve heard this before, but please please please be kind to yourself. STRESSkills. I’ve just watched this silent killer attack two people who are very important to me. It’s dangerous and it destroys lives.
I know, I know…I’m one to talk. For three years (well my entire adult life really) I’ve been trying to learn how to deal with stress, how to let things go, and especially how not to stress myself out.
I’m not there yet, but I am much better at dealing with stress than I used to be. I will no longer allow anyone to have control of what I am feeling. The power over my emotions is mine and mine alone.
This was sooooo not my intention, babbling on about stress but well as usual, once I get going you just never know what direction my rambling will take.
Now that life is about to be back on track, pain, and all I plan on doing better. My goal is to post more regularly on the Facebook page and to have something new on the blog at least once a month.
Ta ta for now and wherever you may be I wish for you to live your life stress–free. Hmmm, ok I’ll make that a wee bit more attainable…
I wish for you to live your life almost stress-free
Suffering from fibromyalgia can be an isolating experience but, if you do suffer from the illness, it’s important to remember that you are in very good company. The internet is full of helpful websites (including those of national organizations) that can act as a great resource when seeking advice, support, and general information: Chronicillness.co
Another great resource made freely available on the internet are the hundreds of blogs created by fellow fibromyalgia patients. Over the past few years, blogging has become an increasingly popular means for individuals to share their advice and experiences with a wide audience. We have listed five great blogs that focus on different aspects of fibromyalgia, to give you a taster:
We love the sentiment behind this wonderful blog by seasoned writer Kimberly Linstruth-Beckom. Diagnosed with fibromyalgia in 2005, Kimberly has been determined not to let it get the better of her and her general fabulousness – and she wants you to feel the same! Describing both her highs and lows: this blog balances an open and honest style of writing, with an upbeat outlook.
Fibro sufferer Tamiko Arbuckle speaks candidly about her experiences with her fibromyalgia condition, including moments of associated depression, stating:
“I created this blog to share my experience with fibromyalgia, depression, and various other fun things I have been diagnosed with over the years… my ups, my downs, my doctor visits, what I learn, and what I recommend.”
Described by blogger Dawn as her: “ journey through Fibromyalgia, Adrenal fatigue, TMJ, CFS, Hyperacusis, Misophonia, Hypothyroid, Pulsatile Tinnitus, and all the joys that come along with it..”.
This informative blog covers a range of topics relating to fibromyalgia, from personal reflections, and quirky exercise ideas to creative inspiration. Well worth checking out.
“Do you find yourself exhausted? Are you sometimes so tired you can’t even look at a problem, let alone do anything about it? Do you take your frustration out on the kids and end up shouting at them? Are you terrified of disappearing into the grey banality of suburban motherhood?”
If this sounds familiar, and you are a parent that suffers from fibromyalgia, then this is the blog for you! Covering a wide range of topics to help you to understand and better deal with the illness: blogger, Lisa Pearson, has also created a handy Pinterest board to compliment her writing.
If you are interested in reading a frank account of coping with fibromyalgia from the perspective of a fellow sufferer, then check out Jenny Ryan’s Cranky Fibro Girl blog:
“I believe that Cranky Fibro Girl showed up to remind me of the most powerful tool I have to deal with my illness: my voice. It’s composed of the ability to find the humor in any situation, a slightly offbeat view of the world, and a healthy dose of sarcasm topped off with just the right amount of edge. Or in other words, snark.”
Well-written, humorous, and refreshingly honest, this blog shares a delightful mixture of personal stories that are full of inspiration, regardless of the author’s highs and lows.
Once you have checked out the links above, there are plenty more to discover by googling “fibromyalgia + blogs”. Be sure to let us know if you stumble across a new favorite.
If you find this form of sharing helpful in dealing with your fibromyalgia condition, why not consider putting together a blog of your own? There are a number of free and user-friendly blogging platforms online that can enable you to share your own stories with the world. You have probably already heard of some of the more popular ones, such as WordPress, Blogger, and Tumblr, and there’s a review of a few more here. Blogging can be a great way to feel connected to a wider support network; as well as share your experiences, helpful advice/information, or just vent a few of your own concerns!
We all want to start our mornings off on the right foot, but it’s not always easy when dealing with fibromyalgia morning foot pain!
The pain we experience and its severity often varies from morning to morning. We cheer on low pain mornings and wish we had the ability to levitate when it is severe.
While there may not be a cure for fibromyalgia, there are ways to reduce morning foot pain that are easy and won’t break your bank account.
Whether from a change in season or the cool breeze blowing from your air conditioner, cold temperatures often trigger foot pain. Cold and rainy days are guaranteed to increase the pain I experience in my feet. One easy way to reduce morning foot pain is to warm those puppies up!
Option number one is to sleep with an electric blanket. I overheat easily in my sleep and won’t sleep well with one on throughout the night, but I love running it for approximately 15-30 minutes while I slowly wake up on a frigid morning.
My second suggestion is actually my favorite because I live in southern California, and there really isn’t very frightful. Being the sweaty Betty that I am, a heated blanket isn’t ideal, but slipping my tootsies into an electric foot warmer, or under a heating pad is perfect!
Either way, options one and two make it possible to comfort your feet without having to leave the bed.
Another option is if your spouse gets up before you, they could fill a hot water bottle to place between your feet.
I love a good reflexology foot massage! It goes beyond releasing tension and pain in my feet, it also reduces pain in other areas of my body. While I haven’t been able to achieve the same results when doing it myself, I have felt and heard a release in tension in my spine, neck, and hips during the foot massages I receive from my husband.
It would be amazing to get a professional reflexology foot massage daily or even weekly, but it’s not realistic. Most health insurance companies do not cover this type of therapy and frequent massages can get quite pricey. And let’s get real, you wouldn’t be reading an article about inexpensive ways to reduce pain if money weren’t an issue. That is why I suggest getting your partner on board to learn about the different pressure points or purchasing a foot massager to enjoy at-home massages all the time.
When it comes to foot massagers, I recommend spending a little more on an electric version that provides a deep tissue massage for your feet and ankles. I never realized how much tension I held in my ankles until my husband began massaging them. Models that also include your calf muscles are even better!
The only reason I would not recommend a reflexology mat or any version that requires you to apply pressure is that we have become so used to holding back when we feel like something is going to inflict pain that we won’t put enough pressure on to achieve the relief our bodies really need. With that said, I know others who say that they are quite happy with them, I am just not one of them.
We pre-treat stains because we know they will not magically disappear overnight. So why is it that so many of us are resistant to pretreating our chronic pain?
Fibromyalgia is not curable, meaning that the odds of waking up pain-free one morning and never having to worry about our feet hurting are slim to none! Although I began experiencing fibromyalgia relief from treating my chronic pain with pemf therapy three years ago, I still experience flares that no machine, pill, or plant can control. However, because I am proactive and pre-treat the areas I know will be affected by weather changes and activity, I experience lower levels of pain less often.
Pre-treating pain areas may feel like a waste of time or a hassle when first practiced. But, if you stick with it, in time you will begin to notice a lower level of pain. Less and consistent pain levels are easier to work with and around. I don’t have to be pain-free to be productive. I just need to be in less pain.
A few ways I pre-treat my foot pain before going to bed include but are not limited to:
Note that I do not do every treatment each night. I mix it up. This includes the types of lotions, oils, and balms I use. The reason for this is that in my 20+ years of battling chronic pain, I have learned that over time when repeating the same treatments every day my body builds a tolerance, and the treatments become ineffective.
If you haven’t gone through your shoe closet and weeded out pairs that are too tight, rub the wrong way, pinch, do not provide support, or do not have cushioned soles, it is time to do so!
Your active and dress shoes should all provide comfort as well as to adapt when a flare causes tendon and joint swelling. We have no idea when and where a flare will strike. Sure we could always carry a backup option, but as I have learned, it is easier and less stressful to leave home in a pair that will adapt.
What I wear on my feet at home is no different. My feet are happiest when I wear slippers that are padded with memory foam that isn’t too thick that I can’t walk right, snug enough to walk comfortably in, and yet loose enough to allow for any swelling that may take place.
Finding the right shoes and slippers may feel like a daunting task, but trust me, once you find a style and brand that you can wear all day without increasing your foot pain, you will easily be able to spot what will or not work in the future.
While I may have loved big, heavy, and clunky shoes in the past, they were all donated years ago. I learned long ago that any pain that could be avoided is always worth the effort.
You may never again know what it is like to live without pain in your feet, but with some changes to your footwear, bedtime routine, and how you address pain, you could experience less pain on a regular basis.
The key to whatever you try is consistency. Only addressing pain when it becomes debilitating or when you can no longer tolerate it isn’t enough. A daily and weekly plan that is adhered to is what will result in a reduction of daily pain on a regular basis.
In previous blogs, we have explored how gentle exercise may help to improve fibromyalgiasymptoms. Studies have shown that low-impact and non-weight-bearing aerobic exercises (such as walking, swimming, and cycling) can help to build up endurance levels and improve flexibility. In addition, other reports suggest that gentle, measured exercise can also help to reduce pain and tenderness in muscles. It is worth bearing in mind, however, that you may feel tired and a little sore after starting a new exercise routine. This is because you may be using muscles that have not been used for a while! Expert rheumatologist Ronenn Roubenoff explains:
“Many of my fibromyalgia patients tell me their pain worsens when they exercise – particularly if they are just starting an exercise program. The truth is that you will have to stick with an exercise program for about six weeks, exercising two or three times per week, to start feeling or seeing any benefit.”
For this reason, it is also incredibly important not to embark on a new exercise regime without first consulting your GP or physiotherapist. Take heart as stamina builds up over time and, if you can discipline yourself to exercise a little and often, you should really start to feel some benefits.
Going swimming is a great way to gently ease yourself into a new exercise routine, and what more inspiration do you need to get into a pool than the fantastic weather that we have been experiencing this Summer?
In addition, buoyancy helps fibro sufferers to avoid jarring movements, as well as gives an expanded range of motion. The other major benefit of swimming is that it is great for all fitness levels and you can set yourself a pace that you feel comfortable with. Doris Cope, MD, Director of Pain Management at the University of Pittsburgh Medical Center advises that: “warm water can be very comforting. The exercise gets blood flow to muscles and tendons. And if you’re in the water, your joints are not being stressed during exercise.”
A Spanish study, of 33 women with fibromyalgia, demonstrated that: “a warm water pool-based exercise program for 12 weeks (2 times/week) led to a positive immediate decrease in the level of pain in female patients with fibromyalgia.” The women involved in the study also reported feeling less depressed and more sociable, as a side benefit of their aquatic activities.
So, if swimming does not appeal to you, there are a number of other alternative pool-based exercises that you might also like to consider, including:
Underwater relaxation therapies such as yoga and tai chi.
The great thing about water exercise classes is that you don’t need to be a super confident swimmer to take part. Whilst in some classes you bob in deep water (with a foam belt or life jacket), in others, you work out in shallow water with your head completely above water.
Check with your local leisure center for suitable water-based exercise activities, and remember to inform the instructor about your condition (as well as your level of swimming ability) before embarking upon a new class.
At first, my illnesses would require a little more rest while away. Because I pushed through pain and fatigue in hopes of keeping up with my family, I always returned home feeling like death. It was not unusual for my body to need days, weeks, and a few times months to recover from a week away from home.
Through the years I have not only made changes to how I address and relieve my chronic pain, but I have made changes to how I vacation too!
Here are a few tips to help you better enjoy your summer vacation!
Do a little research. Locate pharmacies, hospitals, and urgent care facilities that are in close proximity to your hotel. Then verify that they accept your health insurance.
Speaking of health insurance, check with your provider to see what your coverage is while in a different state or country.
Have your most important medicalinformation handy in case of an emergency. Click here to download my free Emergency Wallet Card. Perfect for when you are not able to inform emergency personnel of your health history or allergies. Always inform your traveling companions of their whereabouts so they can access them easily in case of an emergency.
While many people look forward to the rising temperatures of summer, if you suffer from fibromyalgia you can be forgiven for not quite sharing in this enthusiasm. Just as cold weather can cause your symptoms to flare, heat may also bring its own set of challenges. According to Lynne Matallana, founder and president of the National Fibromyalgia Association: “A lot of studies have shown that patients have sensitivity to pain with both temperature extremes… I know people who have packed up and moved their families because they felt another part of the country would be more comfortable for them. It can be that intense.”
However, as the sun puts his hat on, it’s important not to panic; the heat need not ruin the summer ahead for you. By following the advice we have collated on your behalf, you can minimize the impact of soaring temperatures on your symptoms and still enjoy the many benefits of the season:
Stay hydrated Ensure you drink enough water, smaller amounts at regular intervals are best
Maintain a healthy diet Eat plenty of fruit and vegetables, yogurts, and whole grains, and try to avoid spicy and fried food
Stay in the shade Try to organize your schedule to avoid going out in the afternoon sun, if possible. If you do find yourself caught in the sunshine, ensure you protect yourself with sunscreen, shades, and a sunhat/scarf/umbrella.
Try a cooling vest Popular with athletes, cooling vests have also found favor amongst sufferers of chronic pain as a useful means to cool the body down when it feels overheated
I do not have White Coat Syndrome, where patients experience a higher blood pressure reading when at the doctor’s office. My fear of doctors goes way beyond that.
My fears stem from incompetent care. Not from just one doctor or surgeon and I am talking double digits!!!
My medical PTSD is the result of being ignored, dismissed, having more than one surgeon make life-lasting errors, and many post-op errors that will haunt me for life.
In case that is not enough of an explanation, here is a list of some of the reasons I fear doctors, hospitals, and test results.
Not one test ran in the emergency room indicated that my appendix was about to burst. I spent 7 hours crying from pain and being told that they can’t see a reason to give me more pain medication. It wasn’t until a shift change that the real problem was discovered. The new doctor pressed on my appendix, my body bounced off the table, and he said it’s her appendix. He then prepped me for surgery. My appendix could have burst inside had I not made it through a shift change.
Not one scan showed the giant cyst that was pulling my uterus, left ovary and fallopian tube, and bladder to my sidewall. This too was discovered in surgery.
Not one scan gave the surgeons I begged to help me after my hysterectomy a clue to the horror show that was taking place in my abdomen. A large, infected piece of my fallopian tube was never seen, nor were the adhesions that were strangling my bowels.
I experienced something that I thought would never happen to me prior to the second surgery performed to fix my botched hysterectomy.
The surgeon was reading my test results when he mentioned that my appendix looked fantastic. I stopped him and said that there was something wrong because I had my appendix removed 3 years earlier!!
His response? He argued with me!!!! He insisted that the report was read correctly and that it was mine!
Thankfully, I had already adopted the policy of never seeing a doctor alone. Had my husband not been there to witness this conversation, I probably would have had a mental breakdown.
One would think he would have checked to see if the results were correct or even mine. Instead, he questioned whether I really had an appendectomy….. I told him he could call the hospital where it took place if he had any more questions.
Later after surgery, I asked the attending surgeon if he saw an appendix. He said NO! The validation joy didn’t last long. I soon began dealing with the fallout from the errors he made during surgery.
Think surgical errors aren’t common? Well, they appear to be with me!
Apparently, there is only one surgeon in Arizona and one in California who not only knows about but knows where to find the only sutures that I am either not allergic to or that are compatible with my body. Why? Because no matter how much detail I go into when explaining the type of sutures they need to use, I have had an issue with the sutures and my healing all because they chose not to listen to me or take me seriously.
My incisions became infected from staples and traditional sutures. The ones that look like regular sutures but are supposed to dissolve on their own don’t dissolve with my body’s makeup.
A surgeon was in a hurry one Friday afternoon and didn’t take the time to sew me up properly.
Even after I protested and screamed that something was wrong, (blood has never poured out of my incisions in the past) I was told that it was normal and sent home. Mind you, the nurses who told me this was normal refused to look under my gown to see what I was referring to.
The next day I called the hospital who told me no that it wasn’t normal and to get back there asap.
When I did, they discovered that he left a gaping hole where he had cut into my belly button. I have seen three-year-olds do a better job of sewing!!
It took two years for me to get a surgeon to listen to me.
I was told repeatedly that it wasn’t an OBGYN problem since I had the hysterectomy.
Some refused to look past my chronic illnesses on my chart. While others told me that I needed to see a psychiatrist. But the pain wasn’t in my head, it was real.
Finally, when surgeon number 21 agreed to go in and later shared his findings, I could finally breathe. I wasn’t crazy after all.
During the second surgery to address the errors of the hysterectomy, my surgeon severed a set of nerves between my vagina and left leg.
Later one of the top neurologists in Scottsdale, Arizona informed me that there are two sets of nerves in that area. One that is commonly nicked or severed and that had been researched and there were ways to fix it. The other is a set that is so rarely severed or nicked that there was no research on how to fix it.
Can you guess which one my surgeon severed? That is right! I have permanent nerve damage.
The sad part is that every single one of those surgeons is still practicing and has never been reprimanded by the state that the errors took place in. Why? Because my lawyers and the state attorneys were unable to find a peer to testify against them.
When I woke up from surgery without feeling in my left thigh, I quickly called over the recovery room nurse.
She said that it was normal considering that I had just had back surgery. Except that I didn’t have back surgery and there was nothing normal about my numb thigh or the blood pouring out of my belly.
This took place at a world-renown hospital in Arizona, the last place you’d ever expect to be treated so poorly, but yet it happened to me.
The recovery room staff refused to allow my husband into the recovery area, even though everyone else had someone with them.
My husband had my glasses, so I was blind, but I also couldn’t walk because of the nerve damage and was weak from losing more blood, otherwise, I would have left on my own.
I have had doctors scoff at my allergy list. One actually laughed out loud, that is until he ordered a liquid for me to consume before a test he was running and I had an allergic reaction in front of him after one sip.
Others just ignore my list, leaving it up to me to go through the ingredient list to make sure it doesn’t contain one of my allergens.
Nine times out of ten my prescriptions would have killed me had I not done the research.
Living with incurable chronic illnesses means often hearing the words, this is all we can do or there isn’t anything else we can do.
But that doesn’t make it easier knowing that there is only so much that can be done.
However, all we can do or we are going to blame it on one of your chronic conditions don’t cut it when vital organs are being attacked.
What’s really sad is that I am only taken seriously when I have been in a car or other type of accident. Anything that could remotely be blamed on fibromyalgia, psoriatic arthritis, psoriasis, etc. is…….
I could seriously fill a book about how terribly I have been treated by the medical profession.
With just what I shared in this post, are you able to understand why I am so fearful?
Do you see why I do not run to them until I am sure they cannot blame it on something else?
Can you understand why knowing I need to see someone ASAP for my latest bout of abdominal pain fills me with anxiety?
In 2016 I was told by a handful of surgeons that they agreed that adhesions were attacking my bowels. But each and everyone one of them refused to fight for me after their request to schedule surgery was denied by the head of my HMO’s gynecology and GI department. Their reasoning? The adhesions will return…..
Yes, they will return, but I won’t… especially if they are permitted to destroy what is left inside of me. On the other hand, I also fear that a surgeon will make a fatal error.
I got lucky and was able to find temporary relief outside of normal healthcare practices after being completely shut down in 2016. I just pray that I can get lucky one more time…
Ronty Rhodes has been a Solicitor for over 35 years and specializes in complex accident and clinical negligence claims. He is a member of the Association of Personal Injury Lawyers (APIL).
Mr. JH had the benefit of an income protection insurance policy. Insurers refused to pay, relying on a Chronic Pain Abilities Determination (CPAD) administered by Mr. David Newman (a UK Osteopath and Director and Senior Assessor for Formhealth). Mr. J H took his case to the Irish High Court claiming that he was totally disabled by reason of sickness or accident following his occupation as an insurance broker. The income protection policy was intended to cover Mr. J H financially through a period of disability provided he was totally unable to carry out his normal occupation due to a recognized illness or accident. There was a further proviso that he was not involved in carrying out any other occupation for profit, reward, or remuneration.
Mr. JH was diagnosed with FM in April 2009 by a consultant. He was certified unfit for work by his GP in April 2009 and claimed on his policy in September 2009. The insurance company wrote to him in December 2010 stating that in the light of all the medical evidence he was not totally disabled by reason of sickness or accident from following his occupation and the benefit that he had been receiving was terminated after a phased payment over four weeks. The insurance company relied heavily upon the CPAD test.
JH maintained that he satisfied the policy definition, further submissions were made to the insurance company but they decided again in June 2011 that he was not suffering from a disability.
Proceedings were issued by Irish solicitors on 21 June 2012. The solicitors had obtained evidence from a GP, consultant surgeon, and professor of rheumatology. The insurers relied heavily on Mr. Newman and his CPAD test. This is similar to the functional capacity evaluation that has been used widely in England and Wales (and elsewhere) by insurers over many years. Such evaluations can be valuable in establishing levels of function in certain conditions, but they are regarded as highly misleading in fibromyalgia where the sufferer may be able to do tasks at one time but not at others. In particular, it is sustained activity that they find most difficult and that is not really addressed by functional capacity evaluations, particularly where an insurer has instructed the company to carry them out.
In this case, the Court preferred the medical evidence of Mr. JH to that of Mr. Newman. Mr. JH was awarded €91,000, an order for future payments and he was also awarded his legal costs at the end of a five-day high Court hearing.
Ronty Rhodes comments “this case offers great encouragement to those brave enough to take on the insurance companies and for those skeptical about functional capacity evaluations/CPADs. If insurers rely too heavily on these they do so at their peril”.
