Side Effects Of Chronic Diseases That No One Talks About

Side Effects Of Chronic Diseases That No One Talks About

Steve Ariens, PharmD.

When a patient is diagnosed with a particular disease, or group of diseases, they are mostly interested in how the disease is going to affect their quality of life.

Some diseases, like Alzheimers, Lou Gehrig’s Disease, and certain cancers, the change in the patient’s quality of life is pretty certain, as is the outcome. The only thing that is not certain is the time between being diagnosed and the final outcome of the disease.

Steve Ariens

Other diseases, such as Fibromyalgia, Chronic Fatigue, Chronic Pain, and Crohn’s disease… especially in the early stages of these disease, the patient’s quality of life can take fairly large swings.

Those LARGE SWINGS often means that the patient becomes highly unpredictable, in them being able to make scheduled meetings, parties, gathering with family & friends.

After numerous “no-shows” at scheduled activities with family & friends – because the patient’s disease state is in a “flare”… friends and family stop scheduling activities with the patient. Often, because of these mis-activities, friends stop calling… many will just “disappear” from the patient’s life. Family just schedule activities without including them. All to often spouses become distant and/or end up divorcing.

LONELINESS … the side effect that few talk about.

About two years ago, a woman that suffered from numerous chronic conditions decided to create a methodology to help those suffering from this side effect and the non-profit group www.livesupportgroup.com (LSG) was born.

Live Support Group (LSG) created an online support group for those who are suffering from chronic disease(s) and are limited from leaving their homes on a part time or full time basis.

People can connect via phone, tablet or computer to the three weekly meetings. (Monday, Wednesday and Saturday). There is no charge to the participants, they only have to register on the LSG website to get a email sent to them with a link to the specific meeting.  The meetings are totally anonymous, using only first names.

On several occasions, LSG has had special guest physician speakers who will spend 60-90 minutes answering specific questions from the participants during the meetings.

The fact that the LSG is getting ready to celebrate its second anniversary, strongly suggests that people who have (and continue to) participated have benefitted from the peer-to-peer support.

Steve Ariens is a retired pharmacist who shares his thoughts about chronic pain from the perspective of both a pharmacist and a husband whose wife suffers from chronic pain.

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There are 17 comments for this article
  1. cindy deim at 1:27 pm

    Steve, thanks so much for all you do for LSG. You are such a wonderful advocate for all of us living with Chronic pain.

  2. Jean Price at 8:53 am

    I think it’s important to let family and friends NOT make our decisions for us…to still keep asking us, just in case a plan hits on a day we might actually be able to participate! Or to let them know we might be a last minute addition…or, yes…a cancellation, too…yet we want to be part of their plans!! I know I had this same issue early on…and just talking it out helped a great deal! Instead of my husband just saying, ” I don’t know what you feel up to doing!” I asked him to just tell me what HE was going to do or would like to do…then I could figure out where I fit in his plans! It works much better than him not doing something he wants to do, or leaving me entirely out of the decision to go along because he assumes I can’t!!

    I also started just planning I would attend, and work toward whatever was going on, with everyone knowing this could in fact change…but my desire to go was still very strong and I was “willing, IF ABLE”….and maybe next time I’d be good enough to pull it off! Not to stop asking or stop including me…but rather let ME make that decision at the time. Some people stop asking us to PROTECT us! So we won’t feel bad if we have to say no! Others don’t ask because they JUST ASSUME they know the answer, without realizing our days change as do our abilities to participate in various things. And that somethings are just worth more pain to us…if we can manage them at all!

    It’s all the big C word…communication…when it comes to life and relationships, especially when we deal with pain! It becomes more important than ever then, if we are to live as fully and as happily as we can, within the confines of our pain and disabilities. But it’s so worth it, too! Communication can both prevent and dispel misunderstandings and hurt feelings…and keep this from adding to the struggles of life with pain. Not easy when we are hurting and feeling left out of life anyway…but so worth the effort to try for better understanding and more communication of our needs and wants, especially with those we care about!

  3. Kimberly Ann Samuels at 11:20 am

    I’ve been a pain patient since May 2005. Like alot of others mine started from trauma per say.
    I had surgery that went horribly wrong, to say the least. I went in for surgery for a broken elbow and I was left in the beginning paralyzed from the neck down on life support. Well I have to say I was blessed somewhat I am no longer paralyzed from the neck down. My right arm that was broken is now paralyzed and hangs backwards at my wrist. I have Syringomyelia, CRPS, RSD, Carpal Tunnel in my left arm that’s not paralyzed. I could go on. Did I mention I WAS right handed.

    I was 35 when it happened. married , I was and am a mother of 6. Juggled a career at the time as head accountant for an Insurance company. I felt like I was on top of the world. I was so involved in so many things. Very outgoing.
    I am still married ( blessed to have a very supportive husband most of the time) He thinks that because I have come further then I was in the beginning, Hey…Why can’t I keep going? Just can’t Lord knows I’ve tried.
    My extended family and friends when this first happened were all there for me and couldn’t do enough to help me any way or how they could.
    But the same for me as time has gone by less & less and now….. Well it’s been 12 years and it has taken a toll on my body, my looks as well.
    People treat you So different. Not to mention the stares when I am out because how my right arm now looks.
    I’ve changed myself in many ways …the pain has taken a toll on me. Thanks for listening..

  4. Maureen at 7:16 pm

    Re: Bruce… Also, if his doctor told him he would need injections ‘every other week’?! that’s also poor practice. It’s too much/too frequent steroid for his body.
    I smell money making there also!

  5. Maureen at 7:11 pm

    Re: Bruce’s story… Believe him! It happened to me also. When I moved to Fla. 2 yrs ago and connected with a new doc I refused the suggested lumbar injections (been there, done that far too many times over many years, with no relief, plus the steroids make me quite ill for 7-10days) and the recommended spinal stimulator (which I had already had and had removed, it made me worse)…
    I was told then that since I refused either they will give me no meds (even though they do write them there) and I was discharged.
    I did not understand this way of pain management at all. I was stunned to say the least. I was treated horribly and even screamed at by the doctor.
    As a nurse of 34 yrs prior to my auto accident/disabilty I could not believe what I was witnessing. Nor could my case manager nurse sitting next to me!
    I felt horrified and punished! It was a greatly tough emotional time for me especially since I left behind an excellent, caring, understanding and compassionate pain management Doctor behind in Conn.
    I’ve come to learn that this is a money making clinic (and there are many like this out there now) who never even discussed my history, looked at my records nor examined me!
    I could seriously write a book on what I’ve went through then and since in this state!

  6. Keri at 7:07 pm

    In my case I think my “friends” just assumed I wouldn’t be able to do things so they stopped calling, coming over and inviting me to things. I never really got the chance to turn anyone down. Or maybe they just felt the woman who was always laughing and happy was just a big downer now because of her pain. Maybe they didn’t want to hear about it thinking it’s all I would talk about. I went thru a very bad depression for several years. Now I’m so used to being alone (except for my hubby) that it doesn’t matter anymore. I have my animals to keep me company while hubby is at work. My social life revolves around doctor visits. And I’m okay with that now.

  7. Sheryl M Donnell at 12:43 pm

    BRUCE AND PHARMACY STEVE

    I would be VERY cautious saying his doctor was forcing him to buy something unnecessary in this case as these injections as often considered standard procedure and often take several injections before relief can be felt. Often, better open communication and asking your doctor open ended questions will be a better way to handle this before the nuclear option. It is likely he will never find another doctor to help him if he goes that route, it is wrong, however, that is the real world. Go back in with a trusted friend or family member who is very calm and understands medicine and ask more questions first. There are so very few doctors left who treat Chronic Pain, you do not want to cut off your nose to spite your face without being 1000% sure. Best of luck to you!!!

  8. Pharmacist Steve at 10:35 am

    BRUCE…

    It is generally considered insurance fraud to provide procedures/services to a pt and bill any insurance company that have proven NOT BE MEDICALLY NECESSARY. It is also in violation of Sherman Antitrust Act https://en.wikipedia.org/wiki/Tying_(commerce) for a business to FORCE a person to buy something that they don’t want/need in order to get to buy something that they do want/need.. It is also common knowledge that both the FDA and Upjohn – the maker of methylprednisolone do not recommend that medication being used in ESI’s. Again, that could be considered part of insurance fraud.. .billing the insurance company for something in a methodology that is not approved – and discouraged – by the FDA.

  9. Bruce at 8:19 pm

    The doctor who runs my pain clinic threatened to discharge me if I didn’t get lumbar shots (nerve blocks). Said that he couldn’t just write prescriptions with no type of alternative therapy included. Told him (calmly) that the previous two shots did not help me at all. He said that I could fill out hardship papers to pay for the shots. I told him they didn’t work, and how about an ankle pain block shot, because I had one before, and it relieved my fatigue for five days, even if it didn’t touch the pain in my feet. He said that those shots don’t work, that I have to take lumbar shots EVERY OTHER WEEK. On both sides. I did not go to my lumbar injection appointments. I will probably be discharged without any recourse at my next appointment. I have followed their procedures for the almost two years that I have been there, and basically have been a model patient. I called Medicare about it. I am not sure if there is a legal course of action that I’m entitled to. This is all very disturbing for me. Sad. Inhuman.

  10. Susan D at 3:44 pm

    Again you have completely “hit the nail on the head”. Lonely is another of the conditions that’s added to our already existing list. The trauma that we experience when faced with life’s problems, can only be understood by another chronic patient or someone who has their eyes wide open when dealing with a chronic patient. This makes Live Support Group a very necessary part of our life. The emotional distress we experience is hard to even express when we have a change in our doctor, our medicine, our finances and the many other aspects of life that “normal” people take in stride. It’s difficult for the “normal” people to stay friends with many of us as we don’t participate in many of the “fun” aspects of life. Job well done.

  11. kym at 9:19 am

    Hi Steve,
    I wish I was like the CDC and could magically say pain is in your mind and walk it off. They seem to think that they created this sixth sense called pain in the 80’s they can destroy it now. Well, no, they just acknowledged it in the 80s.
    By removing everyone from their pain meds and telling them to cope is starting to create this vacuum of desperation. You can feel the panic starting to rise now and it is not because we are drug adicts like the CDC says. Its cause we are terrified of the pain overwhelming us and confining us to our beds with no solution or someone to even goto for help. When that time comes I’m afraid of the desprit choices people will make to releive themselves of the pain.
    And help will come too late from the CDC and doctors cause they will wait until they see the terrible trends they have caused by all the pain patients from cancer, fibro and finally end-of-life patients. We are coming into a crewl time period of medicine and I wish I didn’t have to see it or take part in it.

  12. Maureen at 1:17 pm

    @ Ibin Aiken and Sheryl… Thank you for all of your ‘very relatable’ words!
    Ibin.. Always write/share as much as you want… we listen.

  13. Sheryl M Donnell at 11:47 am

    Ibin,
    I really appreciated your comments. We both could have written the same column. I might add, since the new CDC guidelines so many of us are again being told to use our minds to control our pain and learn to cope with it. I am constantly amazed that well educated people still say that. We of course have done that to the maximum extent we can with every distraction method and self hypnosis method and biofeedback known to mankind. We are not new to this rodeo. These same people would never tell someone with Cancer pain to use their minds to ignore their pain, when often we are in far greater daily pain than they are earlier in their illness. They would never expect a diabetic to go cold turkey on Insulin and use their mind to will their blood sugar to a tolerable level. Nor would they expect someone with high blood pressure to suddenly stop their medication to use biofeedback and live with it. All of this would be considered malpractice, except for chronic pain patients. Even though denying us enough medication to control our pain causes huge spikes in our blood pressure, heart rate, and several other actual life threatening issues. But, we are scapegoats for all the drug addicts who bought street drugs. Even though none of us did. We went to reputable doctors, signed pain contracts, agreed to random drug testing, single pharmacy refills, etc. And never faltered. But we sit today in agony, our pain medication either stopped totally or woefully inadequate so our lives are barely worth living. Many we know have chosen suicide because the lose of pain medication made their lives unbearable or they had cardiac events directly attributable to the high untreated pain. But, I have a family who needs me so I must endure for now. My quality of life is far far worse than it was 5 years ago, and even 3 years ago or 1 year ago. I suffered 2 major fractures this year. 5 bones in my foot and several fractures in all of the bones in my lower arm. I was denied any pain medication for both injuries because “I already had a pain pump.” That was not set high enough to control my day to day pain below a 7. With each fracture I was forced to live in pain at daily scores of 9.5 to 10 out of 10 for weeks on end. We had to hire 24 hour care just to help me get up to go to the bathroom. But still, no meds. This is no way to treat people. If I was a dog, my doctor would be sued for cruelty to animals as would the CDC. And still all we hear on the news is more regulations. What are we all going to do?

  14. Maureen Christie at 9:17 am

    It would be amazing on all
    Levels if this was all common knowledge. Understood and supported.

  15. Ibin at 7:45 am

    As a chronic pain patient, previous to the CDC “guideline”, still employed, and after 20 years of being subjected to heavy scrutiny with my personal condition from my doctors to family and friends rationalizing that I was not “trying hard enough” or you can “beat this thing”, or “you don’t need medication”. I can now see how my health condition radically affected my life, then and now. It is almost like starting over for the sufficient treatment in the attempt to be able to just cope with severe, continuous pain. Chronic pain, by any “cause”, is a very personal condition that is at best, difficult, to relate to non chronic pain affected people,. as well as your doctor or those even “seeing” your personal struggle to remain somewhat at the agenda we had before chronic pain became another piece of lifes’ puzzle..
    One in chronic pain can and does relate to your pain, more personally than your best companion, not in the same health condition. Exchange of personal views of “how best” to relate to the condition. Networking, socializing with other people, just relating the problems created by a condition that you never asked for, the social misunderstanding by the non chronic pain community, even your doctors personal view of the health condition and treatment of, and, especially the guilt placed on “self” because of the inability to be responsible to family, loved ones and friends previous to your health condition become major concerns and worries over the future.
    Even our physicians in many cases tend to place us in a sub-populous, immediately upon arriving at the last effective treatment for our chronic pain which is very often the prescribing of opioid medication.
    We all “handle” our change in life strategies and activities differently, with some affected to the point of immobility, no income, loss of self worth, and many other variables..
    Twenty years ago, there were no organized facilities or programs other than your doctor or a family member, spouse, or parent to relate real problems in our lives to. I don’t know about how our veterans were “treated “but, from what I read, insufficiently both medically, spiritually, and emotionally. Back then, doctors referred us to psychiatric care for a physiological condition that does affect our reasoning, the huge swings Steve comments on, in both personal pain and emotional reasoning. The swings in pain and reasoning is STILL a realistic part of my life after 20 years. One such psychiatrist attempted to teach how to “control” the ever enduring physical pain with my own thoughts, period. He was not a chronic pain patient. After being on medication for years, he could teach me to control physical pain? I admit that thought and reasoning is a factor in personal pain control. Thought, relating to other people with chronic pain or not, in fact does help with other issues caused by physical pain. Better received by someone with a similar health condition, however, this is not the total answer for those of us in intolerable, insufficiently treated (with medication if, that is the last resort) physical as well as emotional “pain”..Personal chronic pain places us into a lonely position among otherwise, still, very active family and friends.
    Live support group, which I have contacted as of late, is a worthy, compassionate , group of real human beings that can “lend an ear” to our concerns, worries, future, no matter our personal health condition. An understanding group of people to relate our conditions to, is uplifting in spirit. We are not alone. There are STILL compassionate “strangers” in this world that actually care for other “strangers”. Humanity still exists in people we may not know..
    I have read, fairly extensively about the authors and constitutes of the new socialist CDC guideline to our physicians in prescribing opioid medication. Intelligent, pedigreed, physicians, psychologists, psychiatrists and other fields of experts all with different approaches of “assisting?, the chronic pain patient. I still say that with a health condition, until actually experienced, can not be fully rationalized, thus insufficiently treated, by the person or agency that may be really trying to “help”. A basketball, football game, or other venue of entertainment is not the same, “watching” televised, as being there, in person.
    Sharing our thoughts, concerns, and worries about the chronic pain condition or other personal health condition is a step in self help. It is not the solution but, a step in the right direction. I commend “live support group” for their real application of assisting the chronic pain patients and others with adverse health conditions.. .Thanks Steve, for your insight.
    Sorry to share my thoughts so much

  16. Maureen at 6:45 am

    Hi Steve, your subject is a good, common and popular one amongst CP folks. When I first became disabled at age 50, due to my condition, I had a very difficult time, for several years, with this issue.
    I had been very active socially all of my life.
    I put my self into counseling to vent and gain direction with it.
    Over the years I’ve learned to tell people (especially new people in my life) that 4 out 5x I may NOT make it to their invite but…PLEASE don’t stop the invitations. It’s good for my head and helps me know that I am at least thought of.
    My own family is the toughest with NOT understanding this one.
    For example, just this past holiday weekend, I found out that my brother, who lives just 3 blocks from me, invited 2 of my sisters to his home to come ‘hang out’ on Sat. BUT did not invite me over.
    He knows that I am alone 99% of my everyday and would’ve loved to (at least) be invited.
    This set me back emotionally greatly all day on Sunday. I had many talks with myself and God all day long. It’s emotionally tough to deal with it.
    I should’ve prefaced this with…I had emailed my family over a week ago asking them to come to my home for a holiday get together, cook up some hot dogs etc and make a memory. All (4 siblings/families live near me) said they were busy….
    I spent the weekend alone, as always.
    I am the matriarch in this family. I am the oldest of eight. And when I was working (nurse) and had a full life I had their ultimate love and respect.
    When I became disabled…it all dwindled. Shallow…

    RE: Live Peer to Peer (LSG)…I joined it several weeks ago and am loving the support I get and the knowledge and comraderie (sp?) I’m gaining.
    I will have to ask who exactly is the founder…

  17. Dorothy Morris at 5:41 am

    I think alot of people that have chronic dieses can profit from this collumn! I PERSONALY
    enjoy this colomn very much!

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