Every now and then on the Blog it's important to remind ourselves and others how neuropathy affects people in the real world. Several questions have been posted to the blog, as to how neuropathy patients can convince the world around them that they are really in trouble: after all, it's one of those diseases which you can't see just by looking at someone. Seeing someone not respond to the one treatment or the other can also sow the seeds of doubt in people's minds but that's the reality of neuropathy and for many people an extra stress they could do without.
It's all well and good explaining the science and theory behind the disease and the drugs used to treat it but knowing that you're not alone with the way you're feeling, can help enormously. Presenting 'evidence' to family members, workmates and friends is also sometimes necessary - you can see in their eyes that they're wondering exactly how psychosomatic your disease really is and that can be depressing to say the least! Letting them see how others suffer from exactly the same symptoms can be both validating and educative - try showing them some of these short accounts from MedicineNet.com (see link below) and elsewhere on the blog - they'll maybe see you in a different light.
Patient Discussions: Peripheral Neuropathy - Symptoms
Published: June 20
...I have been diagnosed with Peripheral neuropathy and have a Nerve Conduction Velocity Test. It is only in my toes and test showed that it was not a severe case. As I am only 63 sometimes think about the next 20 - 30 years and its' progression although neurologist as said it will be fine! Would taking B12 and Folate be useful as I think what I have is 'idiopathic peripheral neuropathy.
Published: July 15
...I am disabled with peripheral neuropathy; I am on the highest doses of a series of medicine. We started at the lowest dose and each would work for a time and the pain would come back worse. Not just in my feet and legs although this is where it started. Mine is idiopathic neuropathy. For the last 2 months my feet swelled, mostly on the left side. Now they aren't swelling as much but the pain is unbearable and it is difficult to walk. The ankle on the left still swells, a lot of the time it feels like I have wide straps wrapped around the middle of the foot and pain shoots up and down the inside of toes and legs. I am under the care of a neurosurgeon and my family doctor. I just thought you might have some advice, since we seemed to be at the end of the rope.
Published: July 07
...I have peripheral neuropathy as the result of a nerve being compressed during a spinal fusion surgery. It has been a year now, and I still have the pins and needles, bee sting, electric shock and shooting pain sensations in my leg and foot as well as the loss of sensation and hyper sensation of the skin. I currently take 100 mgs of Lyrica three times a day. I will be undergoing a trial using a spinal stimulator that will hopefully lower the level of pain that I have. Then, if it helps, it will be permanently implanted in my spine.
Published: July 16
...I have peripheral neuropathy and have been taking Lyrica (75 mg, three times a day) for three years. I am always tired and depressed because it is not going away. It is most prevalent in the months when I have to wear closed shoes. My family does not understand the pain and anxiety I go through every day. They cannot see it, so they don't believe it. I am currently going to a chiropractor and am hoping that he will align my spine and neck to bring me back to what I was before. He uses manual adjustments with the neck and spine.
Published: July 15
...It began to have problems about 5 years ago, my hands and feet tingling and muscle spasms, they came and went but never stayed long, then a year ago I had problems with my right leg going numb from the thigh down and not being able to stand or walk on it. That lessened and moved to my hands, then to my feet working its way up my legs all the way to my lower back, not in the joints mid muscle with loss of feeling and sensations. Then it went to my hands with weakness and cramping. At times the pain is overwhelming and I get no relief from any of the medications prescribed so far. I want it to end one way or the other.
Published: July 14
...I have pain mostly on my left side of body. It's sharp pain although it has an accompanied sensation which is very disturbing and hard to tolerate. This sensation is like the feeling you get when you scratch your finger nails on a black board. I also get pins and needles along my arms and burning sensation mostly on my palms but at times it is all over including my tongue. When I am depressed, stressed or worried the symptoms seems to increase. This is a problem because I am fatigued from the feeling. I am booked in to see a pain specialist and neurologist in the future but I need something now. Has anybody had same experience symptoms and what helped?
Published: July 14
began to have problems about 5 years ago, my hands and feet tingling and muscle spasms, they came and went but never stayed long, then a year ago I had problems with my right leg going numb from the thigh down and not being able to stand or walk on it. That lessened and moved to my hands, then to my feet working its way up my legs all the way to my lower back, not in the joints mid muscle with loss of feeling and sensations. Then to my hands again with weakness and cramping. At times the pain is overwhelming and I get no relief from any of the medications prescribed so far. I want it to end one way or the other.
Published: July 09
Four years ago I started getting burning feet and lower legs which occurs daily with varying degrees of intensity and is worse at night, often waking me up. I have had extensive tests and no cause could be established. I take Vitamin B complex but this does not seem to help. I am reluctant to take painkillers as I was told they need to be taken continuously. At the time it started I was taking Ciprofloxacin for Prostatitis. Does anyone have similar burning pains and have the found any way to emliminate the symptoms?
http://www.medicinenet.com/peripheral_neuropathy/discussion-188.htm
Today's post from paindoctor.com is a very sensible list of better ways to support a pain patient via the things you say. It's not easy being a friend or relative of someone in chronic pain and most pain patients are well aware of that. Nevertheless, if people just took a second to think about how they phrase something, it can act as a positive and supporting moment for the patient. Unfortunately, thinking twice doesn't come naturally to most people. They think they're saying the right thing but are inadvertently hurting the patient's feelings by being a little insensitive. This article may just be able to act as a guide for friends and family; or at least make them think about how they approach certain issues.
Say This, Not That: Supporting The Chronic Pain Patient By Pain Doctor| September 30th, 2015 People who have a chronic pain patient in their life often walk a fine line in terms of saying the wrong thing. Even the most caring person may inadvertently say things that can be hurtful. They may make assumptions or judgments in their language, not realizing they are doing so. In Say This, Not That, we identify some of these statements and offer alternatives.
Instead of: Does it really hurt that bad? Man up!
Suggesting that a chronic pain patient is less of a “man” or somehow less tough because they are in pain can be not only hurtful to the patient but also permanently damaging to your relationship with them.
Say: Time to call it a day? No problem. I’m ready, too.
Pain is the body’s way of protecting itself against further injury. In some cases, certain types of pain, such as the pain an athlete may feel in training, may be okay. When it comes to chronic pain, “manning up” can cause days or even weeks of backlash with intense pain and difficulty moving. Going at a chronic pain patient’s pace is telling them that it’s okay to feel what they are feeling and allows them the freedom to stop when they are done.
Instead of: There’s a lot you can’t do, isn’t there?
Talk about hurtful! Chronic pain patients are well aware that their condition has made life more challenging. There are activities that are no longer available to them, and they may never recover those abilities. To point this out is not only unsupportive but also downright cruel. There is no sense in highlighting what a chronic pain patient is missing out on.
Say: What do you enjoy doing?
Highlight the things that a chronic pain patient enjoys doing, and work towards those. If a patient says they loved to ride horses before their spinal injury, find a local horse rescue to visit. Do they love playing sports? Many types of adaptive sporting equipment are available for that. While they may never be able to compete in a hunter-pace or golf in a major tournament again, there are ways for chronic pain patients to enjoy the things they love. Accentuate what they can do instead of dwelling on what they can’t.
Instead of: Let me do that for you.
Chronic pain is often interpreted as helplessness. Even though awareness is growing, many still believe that chronic pain patients are unable to care for themselves in any capacity. Others may believe that physical exertion and activity are to be strenuously avoided and will rush in to take over every task, from little things like chopping onions to more physical actions like rearranging furniture.
Say: How can I help?
Before you take those groceries away from a chronic pain patient, ask first if you can help. Although chronic pain patients have days when even blinking is a painful activity, not every day is quite as challenging.
Treating a chronic pain patient as an invalid promotes a cycle of learned helplessness wherein the patient does little and then develops the ability to do even less. Physical activity and movement are actually recommended as much as possible for chronic pain patients, especially for those with conditions that worsen with inactivity (like rheumatoid arthritis). If you see a chronic pain patient struggling or about to fall from a burden they are carrying, don’t hesitate to assist. Otherwise, ask if they need help before swooping in.
Instead of: You are in pain? Here’s some aspirin/ibuprofen.
There are many different things that are wrong and potentially harmful in this statement.
Offering a chronic pain patient an aspirin for their pain is like bailing the ocean out with a teaspoon. Many chronic pain patients suffer from pain that an over-the-counter medication won’t even touch.
Assuming that chronic pain can be fixed by popping a pill – prescription or otherwise – is uninformed and plays into the stereotype of the addicted chronic pain patient.
Chronic pain patients who do take medication under the supervision of their doctors may have already taken their dose for the day, and to offer them more of anything can be dangerous.
Say: You are in pain? Is there any way I can help?
Chances are good that the answer to that question will be “no,” but asking to help instead of offering what you feel is the best solution is the fastest way to earn a chronic pain patient’s respect and trust. In doing so, you are not assuming anything about the chronic pain patient’s experience. You are making yourself available to help in any way that the patient needs, and that is an invaluable gift.
Instead of: Wow, you take a lot of pills!
Chronic pain patients who are taking prescription or over-the-counter medications for pain are already completely aware that they take “a lot” of pills. This statement may be embarrassing for them and may make them less likely to be open about their treatments with you.
If you are a caregiver, the last thing you want is a patient who feels like they have to hide their pills. This can make patients feel ashamed of their treatment and potentially less likely to follow it closely. There is also a strong emotional aspect of chronic pain, and treating a chronic pain patient like an overeager pill-popper is the fastest way to make them feel isolated and alone.
Say: I want to understand your treatment regimen. Are you willing to share?
Again, the answer to this might also be “no,” but asking the question instead of making assumptions is respectful and opens the door for better communication. In some cases, chronic pain patients may, indeed, be taking higher doses of over-the-counter medications than healthy people would take for muscle soreness or a headache. Encouraging the patient to communicate about their treatments, including medication and therapies, can build trust and let the patient know that you truly care about them getting better. If there is any question about medication amounts or you have concerns later on about prescription abuse, this foundation of nonjudgmental trust can make it easier to talk about your concerns.
Instead of: Have you tried______ (examples include: juicing, yoga, meditation, etc.)?
While some chronic pain patients have found relief from some of their symptoms through diet, low-impact exercise, and mindfulness meditation, others have tried everything they can find, to no avail. It can be very frustrating to have a pain-free person suggest treatments that may be scientifically unfounded and/or considered sham treatments or “snake oil.”
Say: What treatments have worked for you?
Chronic pain patients often have a long list of treatments they have tried, some of which may have worked better than others. Rather than assuming you can fix your friend’s pain with a well-intentioned but potentially uniformed suggestion, ask them what has worked or what they might try next. There is a fine line between wanting to be helpful by providing suggestions and being condescending and ignorant in assuming the patient hasn’t tried what they can. If you are a caregiver of a chronic pain patient, you will know where that line is. Others need to be more sensitive when offering suggestions and seek first to understand what has already been tried.
It is important to assume nothing and communicate with kindness and compassion. What are some other potentially hurtful questions or statements, and how can they be turned around?
https://paindoctor.com/say-this-not-that-supporting-the-chronic-pain-patient/
