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Diagnosing, Living With and Beyond Fibromyalgia | Stem Cell, PRP, Acupuncture in Queens & Long Island, New York

Diagnosing, Living With and Beyond Fibromyalgia
Diagnosing, Living With and Beyond Fibromyalgia

 

How Is It Diagnosed?

A fibromyalgia diagnosis is a journey; it takes time and medical professionals will go through a process of tests, eliminating other causes for the pain, and monitoring symptoms. Fibromyalgia symptoms often mirror that of other disorders, so it takes time to rule out alternative causes. Often a doctor will refer patients to a specialist who will ensure that the right diagnosis is given.

In order to be diagnosed with fibromyalgia, a patient must have been experiencing widespread pain, on both sides of the body and both below and above the waist, for longer than three months.

Previously during diagnosis, an examination of tender points was used, meaning that a doctor would put pressure on eighteen points around the body that a fibromyalgia patient would typically feel pain in to see where you felt pain. This is no longer considered standard practice; while it might still be used as an indicator, it’s no longer thought of as an accurate sign of fibromyalgia as this study explains,

Although the tender point examination has been embedded in the culture of FM diagnosis over the past three decades, it is no longer accepted as a reliable clinical finding and is not included in current diagnostic criteria.

Instead, patients are typically assessed using a pain index which divides the body into nineteen sections to assess within which areas of the body the patient is experiencing pain. This is usually combined with what is known as a fibromyalgia questionnaire which addresses the other symptoms and figures out how severe they are. Combining this with looking at a patient’s clinical history, monitoring them over time, and ruling out other causes, a medical professional will then diagnose fibromyalgia.

What Is the Treatment?

There’s no quick cure for fibromyalgia, it is a chronic condition, but this does not mean that there is no hope! Fibromyalgia can be treated and symptoms can be reduced, functioning can be increased and the quality of life in patients can be vastly improved.

Medication might be offered; sometimes painkillers may be prescribed but these tend to be ineffective, thought to be a result of the understood cause of fibromyalgia. Antidepressants are sometimes prescribed which not only help to deal with the emotional impact of fibromyalgia but have also been thought to help with the chemical imbalance causing pain in fibromyalgia patients. Anticonvulsants are sometimes prescribed, thought to calm the overactive pain system. There isn’t a great deal of understanding or research at the moment into how this works, but research is ongoing.

Often medication may focus on symptoms, such as sleeping tablets and muscle relaxants. Massage and acupuncture among other alternative therapies are sometimes used to aid in relaxation. Physical therapy may be offered to help patients strengthen their muscles and learn how to use their bodies even when in pain.

Self-care is a big part of treating and managing fibromyalgia; this means how patients take care of themselves in their day-to-day lives. Things like eating healthy meals, exercising, engaging socially, keeping a good sleep routine, and keeping active are all beneficial to reducing symptoms.

Other treatments involve talking therapies to deal with the emotional impact of the symptoms, mindfulness techniques, Acceptance and commitment therapy (ACT) to increase functioning and reduce symptoms, and Cognitive behavioral therapy (CBT) to reduce symptoms and improve coping strategies, which has been proven to make a big positive impact on patients with chronic pain and their quality of life.

What Is It Like to Live With? (Patient’s perspective)

Fibromyalgia is a tough disorder to live with. I’ve been diagnosed for around five years now and living with the disorder for six years, although I feel that there were signs before that in retrospect. It’s struggle day-to-day and it really does alter your life completely; it’s not something that you can ignore or forget about easily. Fibromyalgia tends to affect almost all areas of life and as I have learned, you must work around it and learn to live with it in order to have a good level of functioning.

When I was first diagnosed, I was hit with a mixture of both relief, because I finally knew what was causing my symptoms and despair, knowing that this condition was chronic and it was going to be tough to cope with. At first, it was overwhelming, and I found fibromyalgia completely disabling. I was struggling to function; I wasn’t working, I struggled with day-to-day tasks, I needed a lot of help from my husband and used a mobility scooter to get around.

Once I started to come to terms with my disorder and began to really educate myself about it, to really figure out that pushing myself wasn’t going to damage my body, then my confidence started to grow. I began to use mindfulness and CBT techniques and started to face situations I had been avoiding out of fear that they would cause a flare in my symptoms. Don’t get me wrong it was slow progress and a long journey, one that I am still on, but as I started to increase my functioning and realize that I could function, I really started to regain that quality of life.

One of the things that made the biggest difference for me was exercise; I adored being out with my dogs, and they of course love exercise. Instead of using my mobility scooter, I started to gradually increase my walking. I started barely being able to walk across the room without agonizing pain, but I kept going. I learned how far I could push myself without aggravating my pain too much, and learned that even though I was in pain, I could still walk; it wasn’t going to literally ‘hurt’ me. I also learned that I didn’t need to feel guilty for resting when my symptoms were at their worst.

I started going on real walks with my dogs and my husband. We increased the distances gradually; sometimes I used a walking stick to help me and I took a portable stool to ensure I could rest when I needed to. In the end, being out in nature with my dogs has become my absolute favorite place to me, it relaxes me and although I still experience pain, it’s a lot more manageable now.

My functioning has increased, I’m working full time from home and I no longer feel hopeless. Instead, I feel like a warrior. Fibromyalgia has not taken my life from me and it will not, I’m going to keep fighting and continue this journey. The more my symptoms gradually reduce and the more I learn to manage them, the more confident and empowered I feel. Things aren’t perfect and my symptoms are still hard to deal with, but they have improved and now I can function!

Tips I’ve Learnt for Living with Fibromyalgia (Patient’s perspective)

From living with fibromyalgia, there are some things I have found that really help me which I wanted to share:

  • Gradual and gentle exercise - I am a huge advocate for exercise; I know that for a lot of people with chronic pain conditions exercise can feel impossible, or even condescending when people suggest that exercise can help. I’m not suggesting that it’s easy or that it’s a quick fix; it has taken me years to get to where I am and I’m still working on it, but it is so incredibly worth it. Take it a step at a time, at your own pace; even small steps forward are still leading you in the right direction.
  • Utilize anything that helps increase your mobility - If mobility aids help you to move your body or to get out and function more, then use them! They can be a great thing and even a stepping stone, like my mobility scooter, has been for me. Use walking sticks, stools so you have somewhere to sit, any mobility aid that gets you out of the house and increases your functioning. It isn’t anything to be ashamed of, that’s what they are there for. Using a mobility aid doesn’t mean that you are giving in, it means that you are using everything you can in your fight to be as mobile as possible, and that’s a positive thing.
  • Release guilt when you need to rest - It’s easy to feel guilty when you need to rest. I found this especially when I was trying to increase my exercise and push myself; I came to realize that it’s about balancing resting when you feel you really need it and pushing yourself when you can.
  • Understand that the pain won’t damage you - One of the things that made the biggest difference to my life was truly understanding the cause of my pain, understanding that it’s not going to damage me even if I keep functioning while I’m in pain.
  • Find motivation in things you are passionate about - Functioning while in pain is hard, so finding things that you really care about, that you are passionate about succeeding with, makes it worthwhile and can help to keep you moving forward.
  • Talk about it - Talking about being in pain may seem pointless but sharing any burden with someone you trust can really lighten the weight you are carrying.
  • Replace negative thoughts with positive ones - I found it helpful when a negative thought came into my head, such as, “you couldn’t complete that walk, you are weak”, to actively say in my head “NO!” and replace that negative thought with a positive one, for example, “you tried hard, look how far you’ve come!”. Don’t let your mind trick you into feeling that you are losing your battle; this isn’t a linear process and bumps in the road don’t mean that you are failing.
  • Face one thing you fear each day - When we talk about not avoiding things that we are fearful may increase our pain, we don’t have to do this all at once. Taking it one thing at a time is much more manageable. I try to do one thing each day that I might feel I want to avoid, even if it’s something small like taking a shower even if I feel like I’m too sore to do so. The next day I’ll do the same, and gradually I am building my confidence and beating my fibromyalgia.
  • Make lists - Writing down goals that you want to achieve that day to keep you motivated and give you structure, especially if you aren’t working, can be helpful. When you are facing fibro fog it’s also helpful to write things down so that if you forget, it’s there to remind you.
  • Find simple joys - Living with a chronic pain condition can really sap the joy out of your life, it can make you focused on functioning and just surviving rather than thriving. Remember that you are fighting your condition, and you can get that joy back. Do your best to fill your life with small things that really make you happy and take the time at that moment to really appreciate them. Whether this is treating yourself to your favorite dessert, taking a few moments to listen to your favorite song, encouraging yourself to ring a friend, or in my case, feeling grounded in nature; it can really improve your quality of life.
  • Connect with others who understand - Feeling that others don’t understand what you are going through can be really isolating, even when you are surrounded by people who love you and want to help. Try to connect with other people who share your diagnosis. You can do this through support groups or online; I’ve found a community of people on Twitter who mean the absolute world to me because they really ‘get’ what I am going through.
  • Use mindfulness and CBT techniques - Practicing mindfulness can really give you that calm and relaxation that you need, it can help you to release your stress. Using CBT can be truly life-changing; it can help you to change how you view your condition and reduce your symptoms.

If you are reading this and you are struggling with fibromyalgia or any other chronic pain disorder, please know that you can take your life back; you are strong, and your illness does not control you. You can learn how to control it, how to live with it, and beyond it!

Precision Pain Care and Rehabilitation has two convenient locations in Richmond Hill – Queens and New Hyde Park – Long Island. Call the Richmond Hill office at (718) 215-1888, or (516) 419-4480 for the Long Island office, to arrange an appointment with our Interventional Pain Management Specialist, Dr. Jeffrey Chacko.

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