When your parent is a 'difficult child' ?

goldenguru

Active Member
Don't know if anyone else has faced this situation. But, I figure it's worth a try.

My mom has become addicted to pain killers. Several years ago she was diagnosed with fibromyalgia. In three years time, she has quit working, driving, dressing, showering, cooking and being involved with family. She has literally become an invalid.

On several occasions I have tried to talk to my parents and express my concerns. I have suggested that we go to Mayo Clinic to get a full work up and a second opinion. I have printed internet articles concerning her disorder. I have printed articles regarding the morphine lollipops that she takes daily.

Last Saturday I invited them out for dinner. One hour before they were to arrive my dad called and said "Daughter ... we aren't going to make it. Your mom is just too weak and staggering around". I try to tell him that the drugs are slowly killing her ... yada yada. He says he agrees that we need to do something different.

So, she has an appointment yesterday with her 'pain specialist' (aka: drug dealer). He has prescribed her more morphine. She did have to cut back a little on the
Vicodan ... but she got her way. MORE morphine. OMG!! :faint:

I love my parents. I just don't know how to respond to them anymore. In addition to her addiction she has some serious mental issues. I seriously could write a book. Want the highlights from the last several months? How about her pulling a gun on my 21 year old son? How about her telling my daughter that I was having an affair? How about her telling ME that my dad is having an affair. This situation is beyond bizarre. It is beyond drama and fiction.

I would welcome any advise, insight or experiences. Thanks in advance.
 

Fran

Former desparate mom
GG, what a horrid situation. You have all the worry and no power. If your dad continues to enable her then there is little you can do. I would not let the kids over there as long as there is a gun. No way! No how!
Your father is too close to the situation to see clearly. This is a disaster waiting to happen. She could shoot your dad, you, a neighbor, a kid walking along. The gun should/must be removed.

If your dad seems to think your mother is competant to make her own decisions then you have nothing to do but call on the phone and try to connect. Hopefully she will hit rock bottom and try to dig out of her maze of illness, mental instability, drug addiction. They are all intertwined.

Hugs. This is hard to watch such a dramatic change.
 
I also have a mother who, although never diagnosed, I truly believe has serious mental health issues as well. I used to talk to my father until I was blue in the face that he really needed to try to persuade her to get some help. He was always in a state of denial. Actually, I think he was an enabler. He allowed her to remain the way she was and ended up doing everything for her. In their relationship, he is the "parent" and she is the "child". There is absolutely nothing healthy about their marriage!

Last year I learned some absolutely horrible things about my father. My relationship with my parents was never a healthy one. As I look back, my father was distant and cold and totally self-centered. He hid this by always saying the right things and talking as though he really cared. However, at times when I really needed him, he always let me down. He was never there. Talk is cheap. As the old saying goes, "Actions speak louder than words."

After learning about the horrible things my father did, I was in a state of shock. I NEVER in a zillion years thought he was capable of what he did!!! After much soul searching, I realized that it was time to cut off the ties with my parents. My first and top priority is my husband and children.

This wasn't an easy thing to do. However, given the circumstances, I believe it was absolutely necessary. Explaining to my children why they would never see their grandparents again was very, very difficult. difficult child 2 "hated" me for a long time. Honestly, I still don't think he totally understands why I won't let him see his grandparents. However, I know I made the right decision.

I'm not saying that you have to cut off all ties with your parents the way I did with mine. However, in my humble opinion, I think a healthy dose of detachment is necessary. You have your own life to lead and a family of your own. You can't make your parents change. Your parents are the only ones who can make positive changes in their own lives.

Once you accept the fact that you can't change them, then it is up to you to decide how much or how little you choose to communicate with them.

Sending cyber hugs. WFEN

P.S. I don't know how I could have missed the line about the gun!!! I realized I missed it after reading Fran's response. I agree with Fran. You cannot allow your children to be put in a dangerous situation!!! If you still don't want to cut off all ties with your mother, that is your choice. However, in my humble opinion, there is NO WAY I would allow her near my children unless she received treatment and was stable.
 

DammitJanet

Well-Known Member
The gun issue is and mental instability aside, I am probably not going to be liked for my answer here. Who can say she is addicted to her pain medications? Maybe dependent...but if she has fibromyalgia that is a very painful and debilitating condition and a pain specialist is prescribing these medications for her. It is not easy to get narcotics prescribed.

Instead of sending her articles on her disorder, of which I am sure she already knows plenty, maybe try to understand that she cannot do everything she once did. If she is getting morphine then she is in a good deal of pain.

I was on oxycontin at one point and am probably heading back to stronger narcotics at some point in the future as my pain levels are up there again. None of us with these chronic, hidden, pain disorders wants them. We didnt ask for them. We did nothing to get them. Just like with our difficult child's, we would like the world at large to accept us without judging us as bad people or "addicts".

I dont know your mom but this post really hit me because it could have been written by one of my kids. I have done most of what you have written except I have no daughters.
 

goldenguru

Active Member
Thanks so much for the responses!

Fran ~ My father put the gun under lock and key when she pulled it on my son. So in that respect he is being responsible. I just don't understand how he can't see the severity of her mental deterioration.

EN~ I'm sorry about your family situation. My parents aren't dangerous people. They are dear people. I would never cut ties ... detach a little - probably.

Janet~ I'm not negating the fact that she probably has a lot of pain. My concern is that 1) she isn't doing any other non-narcotic things to manage the disease IE: physical therapy, regular gentle exercise. My purpose in giving her articles is to show her that there are other methods (in addition to narcotics) in treating this disorder. 2) Her condition never goes into remission. I have read plenty that over the course of three or four years she should be experiencing periods of remission where such heavy narcotics are not necessary. 3) The drug that she is currently taking is phentnayl (not sure on spelling). The FDA has mandated that this drug be prescribed ONLY in the final stages of terminal cancer, and only for 'break through' pain. 4)I have observed her drug seeking behavior. 5) In addition to morphine lollipops she regularly takes Vicodin, Valium, muscle relaxers, and Ambien (sleepers). I fear that some day her body is going to stop metabolizing all of this and put her in a coma. I think my fears are legit. 6) She categorically REFUSES to get a second opinion. Why?

A few months ago they were out for dinner. Just before we sat down to eat she stated that she 'was getting a migraine'. An almost daily event. What surprised me was that she wanted to pack up some meals 'to go'. And she did. She got two plates out of my cupboard ... fixed them up ... covered them with saran wrap and went home to 'medicate'. What struck me as really, really, really odd is that when you are having a migraine the LAST thing on your mind is food. I know when I've had migraines I stagger to the bedroom to close the blinds and crawl in bed. I would never be thinking about dinner. It just didn't add up.

What is the definition of dependence? How does that differ from addiction? If my mom was doing illegal drugs to the point that she had quit living wouldn't we consider her an addict?

I don't judge my mom. I love my mom. I worry that these drugs are going to kill my mom and that we are going to stand around her casket and ask "Why didn't we do more?".
 

crazymama30

Active Member
Many times chronic painers get depressed, due to the chronic pain. Morphine does seem a bit strong. Sometimes it is hard to do other things to treat fibro and other things like it as there is not a lot of knowledge about them compared to something more common like arthritis. I am not sure if physical therapy would help or hinder. I do not know if she is an addict or a prisoner of her condition. I think you have some very serious and valid concerns, but I can see Janet's point also.


My husband is a chronic painer, and we do not know why. Some days he takes many percocet, other days he takes none. I can see why a pattern like that would make you feel better.
 

DammitJanet

Well-Known Member
Dependence and addiction are NOT the same thing!!!!


Ok...now my dander is up. Im going to go get information from reputable sources that refutes misinformation and post it. I will be back.
 

DammitJanet

Well-Known Member
Article: Understanding Addiction vs. Physical Dependence 04/10/07 07:38 AM




A concensus document from the American Academy of Pain Medicine, the American Pain Society and the American Society of Addiction Medicine.

Clear terminology is necessary for effective communication regarding medical issues. Scientists, clinicians, regulators and the lay public use disparate definitions of terms related to addiction. These disparities contribute to a misunderstanding of the nature of addiction and the risk of addiction, especially in situations in which opioids are used, or are being considered for use, to manage pain. Confusion regarding the treatment of pain results in unnecessary suffering, economic burdens to society, and inappropriate adverse actions against patients and professionals.

Many medications, including opioids, play important roles in the treatment of pain. Opioids, however, often have their utilization limited by concerns regarding misuse, addiction and possible diversion for non-medical uses.

Many medications used in medical practice produce dependence, and some may lead to addiction in vulnerable individuals. The latter medications appear to stimulate brain reward mechanisms; these include opioids, sedatives, stimulants, anxiolytics, some muscle relaxants, and cannabinoids.

Physical dependence, tolerance and addiction are discrete and different phenomena that are often confused. Since their clinical implications and management differ markedly, it is important that uniform definitions, based on current scientific and clinical understanding, be established in order to promote better care of patients with pain and other conditions where the use of dependence-producing drugs is appropriate, and to encourage appropriate regulatory policies and enforcement strategies.


RECOMMENDATIONS

The American Society of Addiction Medicine (ASAM), the American Academy of Pain Medicine (AAPM), and the American Pain Society (APS) recognize the following definitions and recommend their use:

ADDICTION

Addiction is a primary, chronic, neurobiologicneurobiological disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.

PHYSICAL DEPENDENCE

Physical dependence is a state of adaptation that often includes tolerance and is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.

In the case of sedative drugs, spontaneous withdrawal may occur with continued use. Tolerance is a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug's effects over time.


DISCUSSION

Most specialists in pain medicine and addiction medicine agree that patients treated with prolonged opioid therapy usually do develop physical dependence and sometimes develop tolerance, but do not usually develop addictive disorders. However, the actual risk is not known and probably varies with genetic predisposition, among other factors. Addiction, unlike tolerance and physical dependence, is not a predictable drug effect, but represents an idiosyncratic adverse reaction in biologically and psychosocially vulnerable individuals. Most exposures to drugs that can stimulate the brain's reward center do not produce addiction. Addiction is a primary chronic disease and exposure to drugs is only one of the etiologic factors in its development.

Addiction in the course of opioid therapy of pain can best be assessed after the pain has been brought under adequate control, though this is not always possible. Addiction is recognized by the observation of one or more of its characteristic features: impaired control, craving and compulsive use, and continued use despite negative physical, mental and/or social consequences. An individual's behaviors that may suggest addiction sometimes are simply a reflection of unrelieved pain or other problems unrelated to addiction. Therefore, good clinical judgment must be used in determining whether the pattern of behaviors signals the presence of addiction or reflects a different issue.

Behaviors suggestive of addiction may include: inability to take medications according to an agreed upon schedule, taking multiple doses together, frequent reports of lost or stolen prescriptions, doctor shopping, isolation from family and friends and/or use of non-prescribed psychoactive drugs in addition to prescribed medications. Other behaviors which may raise concern are the use of analgesic medications for other than analgesic effects, such as sedation, an increase in energy, a decrease in anxiety, or intoxication; non-compliance with recommended non-opioid treatments or evaluations; insistence on rapid-onset formulations/routes of administration; or reports of no relief whatsoever by any non-opioid treatments.

Adverse consequences of addictive use of medications may include persistent sedation or intoxication due to overuse; increasing functional impairment and other medical complications; psychological manifestations such as irritability, apathy, anxiety or depression; or adverse legal, economic or social consequences. Common and expected side effects of the medications, such as constipation or sedation due to use of prescribed doses, are not viewed as adverse consequences in this context. It should be emphasized that no single event is diagnostic of addictive disorder. Rather, the diagnosis is made in response to a pattern of behavior that usually becomes obvious over time.

Pseudoaddiction is a term which has been used to describe patient behaviors that may occur when pain is undertreated. Patients with unrelieved pain may become focused on obtaining medications, may "clock watch," and may otherwise seem inappropriately "drug seeking." Even such behaviors as illicit drug use and deception can occur in the patient's efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.

Physical dependence on and tolerance to prescribed drugs do not constitute sufficient evidence of psychoactive substance use disorder or addiction. They are normal responses that often occur with the persistent use of certain medications. Physical dependence may develop with chronic use of many classes of medications. These include beta blockers, alpha-2 adrenergic agents, corticosteroids, antidepressants and other medications that are not associated with addictive disorders.

When drugs that induce physical dependence are no longer needed, they should be carefully tapered while monitoring clinical symptoms to avoid withdrawal phenomena and such effects as rebound hyperalgesia. Such tapering, or withdrawal, of medication should not be termed detoxification. At times, anxiety and sweating can be seen in patients who are dependent on sedative drugs, such as alcohol or benzodiazepines, and who continue taking these drugs. This is usually an indication of development of tolerance, though the symptoms may be due to a return of the symptoms of an underlying anxiety disorder, due to the development of a new anxiety disorder related to drug use, or due to true withdrawal symptoms.

A patient who is physically dependent on opioids may sometimes continue to use these despite resolution of pain only to avoid withdrawal. Such use does not necessarily reflect addiction.

Tolerance may occur to both the desired and undesired effects of drugs, and may develop at different rates for different effects. For example, in the case of opioids, tolerance usually develops more slowly to analgesia than to respiratory depression, and tolerance to the constipating effects may not occur at all. Tolerance to the analgesic effects of opioids is variable in occurrence but is never absolute; thus, no upper limit to dosage of pure opioid agonists can be established.

Universal agreement on definitions of addiction, physical dependence and tolerance is critical to the optimization of pain treatment and the management of addictive disorders. While the definitions offered here do not constitute formal diagnostic criteria, it is hoped that they may serve as a basis for the future development of more specific, universally accepted diagnostic guidelines. The definitions and concepts that are offered here have been developed through a consensus process of the American Academy of Pain Medicine, the American Pain Society, and the American Society of Addiction Medicine.
 

goldenguru

Active Member
Oh Janet ~

My intention was CERTAINLY not to get your dander up. My questions were not rhetorical. They were intended as sincere questions ... to which I am truly seeking answers.

Gosh I hope I haven't offended you. That is the furthest thing from my mind .... :slap:

EDIT: I have to go to work ... I can't read the article you posted just now ... but I will be back to read it. Thank you!
 

Fran

Former desparate mom
So how do you know what is pain induced, drug induced or mental instability,aging dementia Janet?

If you are too weak from the narcotics that you can't function, then there is something wrong. No one is denying pain. Pain medications are supposed to bring you closer to average. Not knock you out.
The sounds of gg seems she is detiorating rapidly. You still shower, drive, take care of your home. Her mom is confused almost dementia sounding with the accusations of affairs. The gun thing is absolutely screaming "confused".
Janet, I would never presume that someone wasn't having pain but losing your mother to a drug induced fog isn't the way to go either.
A second opinion is required.

I always thought that if I were wrong in my thoughts about difficult child, then let an expert tell me I'm wrong. No one else knows if this woman is addicted or if there is something else going on. An expert should evaluate and treat.
 

Sunlight

Active Member
my ex had the Fentanyl pain patch after surgery for a while. it was prescribed to help him thru the pain of colon reattachment. he is now not on any pain killers. so it can be used for a while for pain management.

would your mom or dad give permission for her doctor to talk to you?
 
GG

You did not get anyone's dander up.

I did. I said that there was not much of a difference between dependence and addiction. All I know is that I was DEPENDENT on dope, and that I was ADDICTED to dope.

I guess I stand corrected. Sorry Janet.
 

Marguerite

Active Member
I must side with Janet on this one, at least in caution. I have been accused of being an addict. First by my previous 'stalker', who really knows nothing about what he's talking about - he's a ratbag with a big mouth who promptly told everybody, just as he had earlier accused a neighbour with MS as being anorexic - "if you don't eat something, you'll die!" even though she WAS eating, just the disease was making her muscles waste away.
And second, and this time I took notice - by my specialist.

When the specialist said to me, "you are addicted to this medication," I was hostile about it. But when I pinned him down, what he meant was, "You are dependent on this medication to ease your pain, and you've been on it for so long that your body has adapted to it so you will have withdrawal symptoms if you stop taking it."

I had earlier had a GP express grave concern about the medication I was taking. At the time I was taking a pill which is a combination of 500 mg paracetamol and 30 mg codeine. My liver function was not great and my GP blamed my codeine intake. He suggested I gradually taper off to see if my liver function improved. "Just ease back so you're only taking the paracetamol," he told me.
Rather than taper it off, I thought, "I'll show him - I don't need to taper off," and I just stopped taking it, cold turkey. Instead I took plain paracetamol. I did try to take aspirin instead, which at first was fairly effective for the pain (not as good without codeine, though) but then I began reacting to the aspirin.
Withdrawal symptoms - hardly a thing. Apart from PAIN.

I stuck it out for a week then went back to my GP. "OK, it's been a week. Do more bloods. Paracetamol on its own isn't doing much so I'm not taking it wither - a good thing, since I've found out codeine is perfectly OK for the liver, it's the paracetamol that is bad - and you wanted me to take more of it?"
I went on to explain - the only side effect I had was pain, which is why I was taking the stuff in the first place. Had I proved my point? Could he now prescribe with a clear conscience?

And here it was, a couple of years later, and my specialist is getting tongue-twisted on exactly what he means when he says "addiction". I actually rang an addiction clinic - in their mind, you are an addict if you take anything like this, whether it's controlled carefully or not. They urged me to get off the stuff. "So how should I manage my pain?" I asked. They had no answer, simply said there was no pain. yeah, right. This is MY body, mate. I know how it hurts.

I happened to be going in to hospital. One of the first people in the multidisciplinary team that my specialist organised, was the hospital pain specialist and rehab expert. He immediately overruled my specialist's concerns about my "addiction" and told him to pull his head in. And yet, I wanted to prove the same point to my specialist. I happened to be on the AIDS ward with a lot of other addicts - methadone doled out in cups - and here they were, with me refusing my pain medications because I was on purgatives anyway for kidney X-rays. "No point taking it," I told them. By this stage I was taking sustained release morphine, which wouldn't get absorbed before the purgatives whisked it out of my body. I insisted on NOT taking my morphine. Of course, the side effect of not taking the morphine was more diarrhoea, but since I had taken purgatives anyway, so what? Once I'd had the tests and the purgatives were out of my system, I agreed to take my morphine.

It's now over ten years later. I began seeing a pain specialist at the time. And what I have been taking then, and since, IS what is prescribed for end-stage cancer patients. Because it is administered and strictly supervised under the care of a pain clinic, I can get my medications. Yes, I DO get anxious if I start running out because I don't think I can do my little trick of refusing my medications any more - the dose has increased over the years but because the pain has also increased over the years. partly increased tolerance - it does happen - but mostly, increased pain because this disease (which some would call fibromyalgia, although many would argue about that, it's also been called CFS, Guillaine-Barre and MS) is moving further into my body and aggravating more nerves.

I have a lot of hoops I have to jump through, to get my medications. I can't doctor-hop because every prescription is regulated and monitored by the government doctors. I get no repeats on my prescription, I can only go to one doctor to get my prescriptions, and I have to go every month. I can't go more often than three weeks and even then, only with a good reason. Two appointments three weeks apart instead of four, and the government body the doctor has to ring to order my prescription (and who record the prescription number as well as my name and Medicare number, and the doctor's prescribing authority number plus his registration number) would refuse to authorise the prescription. "Come back next week," they would say.

If I lose any, I have to justify it. If I dramatically increase my dose, I will run out before the month is out and I won't be able to get more.

And the reason I take morphine - because it is the safest. I still have to take some paracetamol (which I also take with codeine for breakthrough pain) because the paracetamol has a synergistic effect on the morphine. Aspirin would also work the same way (better, probably) but I can't take any of those any more. Paracetamol for me now has to be rationed - too much damages the liver. Although, when we looked back through the records, we finally worked out why my liver had been so bad - my GP, in trying to ease my pain, had prescribed Tegretol. And it was THIS, and not the opiates, that sent my LFTs through the roof and made me so ill.

One day the dosage I need may finally be too great for my body to tolerate. However, it's been a few years since my last increase and I'm still managing fine without having to change my dose.

Please be aware - this is not stuff I have shared on this site before, in this detail, outside a PM. But I am sharing this now because there seems to be so much misunderstanding on this thread.

Now, back to your mother - she may be abusing her medication. I really don't know. But if the US system is anything like the Australian one, she won't be able to, not legally. And the illegal route is too difficult. Plus, if your regular doctors get the faintest hint that you have become an addict, this is notifiable and she would be in rehab so fast her head would swim. They would also stop prescribing the morphine and put her on something else instead, like naltrexone,

Some people do not have such a manageable time on morphine as I do. I count myself very lucky that I can manage my condition as well as I do. The morphine has freed me up to lead as normal a life as possible. If I were living in the UK, I would probably be on heroin, which for medicinal purposes is a better drug. You also do NOT get addicted to these drugs, if you take them properly, as prescribed. If you allow yourself to enjoy any "high", then you can quickly escalate to dependence, tolerance and addiction.

I know my body is now physically adapted to the morphine. By this I mean, if I don't take it (or I'm ill and have either diarrhoea or vomiting, and so don't absorb it) I do get some physical withdrawal symptoms. But with all this pain, who gives a rat's about a little bit more diarrhoea? I have no problems with the few, mild withdrawal problems I've had when my medications are late or not absorbed. I DO have BIG problems with the pain.

I do get headaches. I've had doctors describe them as migraine - they can be that bad. Amazingly, I can often still read a book or eat a meal. However, I get very sensitive to light and activity. If I've missed taking my morphine and I get one of these headaches, I often need an injection of antiemetic plus morphine, to block both the headache and the vomiting, and to replace what my body is not absorbing.

If your mother is abusing her medication, her doctor should be aware of it. Although he cannot comment to you, you could at least ask him to consider the possibility. However, I think by your denial of her apparent need for morphine, you are not helping the situation. All you will do is make her feel more desperate, and afraid her lifeline of medication will dry up. because if you're suffering enough pain to justify morphine - you will do almost anything to stop that pain returning.

If your mother is unbalanced in other ways, it COULD be a reaction to the morphine (my dad would hallucinate on it; he was taking morphine in his last days, dying from emphysema and TB) or it could be entirely unrelated. But be thankful - morphine is one of the safest drugs to take, as regards to the rest of the body's functions. The biggest problem is in the case of an overdose, the respiratory centre of the brain can be affected to the point where breathing stops. This is what happens to addicts who overdose in the street. There, they've taken an unknown quantity (because so often it's been cut to an unknown varying degree, with any one of a number of potentially nasty substances) and they are also taking far too much for any pain needs.

I've been on morphine for over ten years. Maybe 12. Without it I simply cannot function - my body freezes up and the pain just stops me cold. With it, I seem to be almost normal, to most people. I function better now, on morphine, than I did for years trying to keep uncontrollable pain, under control - and failing. At first when I went onto morphine I was able to switch back to my previous codeine/paracetamol mix, but not for ten years now. And fibromyalgia, especially after some time has passed, can stop relapsing/remitting and simply go into a chronic phase.

What I do, to ensure I'm at least living a 'normal' life and not letting the disease rule me - I take my SR medications on time. I carry spares with me - a few days' supply. I also carry spares of my top-up medications. And I keep a diary in which I write down what medications I take, when, and what for. I also score each day from 1 to 10 and note down anything else relevant. This diary is available for my doctor. I choose to keep it. My specialist (the one who raised the concern of addiction and who then backpedalled when told to pull his head in) was a really great guy and it was HIS suggestion to keep the diary, from well before I was taking any serious pain medications.

I hope I've explained things and put them in a better perspective. TV shows like "House" make me cranky, because they are very misleading on this topic (and a lot of others). To insist House stop taking all pain medications because he's an addict - it's simplistic, cruel and just plain wrong. But to perhaps insist he take his medications more appropriately - yes, that should have been investigated.

I've learned to be discreet when I take my medications. I've even taken my codeine dry, if asking for a glass of water would be too obvious. Those things are really bitter; to :censored2: them like a lozenge is not pleasant. But since my former friend and later stalker began his attack on me and then slandered and libelled me, I've learned to not trust people. That is why I've even been reluctant to share here - until now.

But I want to help you understand, and I want to help you to help your mother, more appropriately.

If you still feel there is a problem, then maybe this can give you a better sense of direction to know what to do next. But please believe me, her pain management doctor could not get away with being her "pusher". If she's taking more than she should, then she's getting an illicit supply somewhere else. And I doubt that. I'd be looking for possible reactions, or maybe an independent cause for instability.

Good luck with this one, it is a very emotional issue.

Marg
 

DammitJanet

Well-Known Member
GG...you didnt upset me, BBK did and its because I have the disorders being talked about. I am sorry that I have gone off on a tangent in this post.

I certainly dont know your mom and she may well be abusing her pain medications. I have no clue.

Her pain management doctor should be keeping an eye on her and not be allowing that. If he is, then he is negligent.

There are fibro patients who are bedridden and in such horrible pain that they are simply unable to function. They have brain fog, pain, muscle weakness, tremors and other problems that dont allow them to function.

Im going to recommend a website to GG that she can go to and read and get some first hand information about fibro. http://www.immunesupport.com You have to join the messageboard to read the posts.

As far as me still driving, yes I do but that is about all I can still do. I can barely cook a full meal and keeping house is out for me. I cant vacuum, sweep a rug, bending to wash tubs or showers is a thing of the past...etc. I can sometimes get a sink full of dishes done if I split them up into a few sessions. If it isnt waist high, I cant do it. I can only stand up for about 10 or 15 mins at a time and that is iffy. I dont make beds. I sit on the couch and fold clothes in small batches.

Yes I still adore my grandbaby and can hug her and hold her but its on the couch and in bed. I cant carry her anymore. I cant keep up with her. She already knows grandma is sick. Grandma takes naps. Grandma takes medications. Grandma limps. Grandma has a walker. She knows.
 

Marguerite

Active Member
Thanks, BBK. You're a good egg. I was just musing - so many doctors and 'experts' misunderstand this issue, it's no wonder there is such confusion and distress over it. Like the drug clinic I rang; and my lovely but outspoken specialist.

Maybe the difference is - if you can stick it out and re-educate the person with the concern (as I did with my specialist, with the help of the pain expert) then it has been done with continuity of care. But when a person simply avoids the issue and runs elsewhere, that's when misinformation and miscommunication can cause problems to escalate. And sometimes those are the problems that can lead to reduced vigilance in the members of the medical profession who lost need to keep an eye on the patient. Where the patient has long-term history with a doctor, then that doctor gets to see the pattern of their medication usage. But where a system allows a patient to 'shop around" (which I don't think is possible in this case, but it's worth checking as a hypothetical - ask your own GP about how the prescribing system works in this case) then it's easier for a patient to mismanage their own condition.

With FM, gentle exercise within the patient's limitations are what is needed. Those limitations can vary - sometimes all they can manage is a walk to the letterbox. Where the patient can rest too much, they can deteriorate (independent of ay medication issues) simply because they CAN rest, so they DO. I've seen this happen more with men who have wives to run round after them; when you're a mother of young kids you don't have that luxury, so I think it's been my kids who have kept me as fit (coff coff) as I am.

Your mother should have more than just a pain specialist - she needs another specialist - neurologist or immunologist - to oversee the FM. And a reputable one would be trying to coax her to exercise, even if it's nothing more than simple stretches (which we should all be able to do, even a little). Stretches are good - they do make it easier for you to move, and overcomes the inertia that is common in FM, that sense of, "If I don't move, it won't hurt so much."

Here's hoping you can sort out the problem here and help her.

Marg
 
My mother in law developed Alzheimer's in her 60s. Any chance that's a factor in your mom's behavior? Relating to pulling the gun, mother in law started believing that her husband had kidnapped her and was holding her prisoner. She hit him and hurt him pretty bad at one point. Another lady, a family friend, started believing that little boys were living in her house and stealing things from her.
 

nvts

Active Member
:sword:

Hi gg! I'm going out on a limb because I don't have the experience like the people on here that suffer from the pain of neuromuscular disorders, etc. I swear, I might complain about stuff, but never in my life would I EVER claim to "understand" their pain. To me (by the description), Janet and Marg and many others on CD are hero's for living what to me would be a nightmare.

HOWEVER: We may have lost sight of gg's problem by feeling passionate about our situations vs. the questions at hand. (I say this purely without disrespect OR disregard for anyone!).

From a "detached" opinion: I would say that gg knows her mom for who she's always been and her gut is telling her that SOMETHING ISN'T RIGHT. Quite often, we've advised that people go with their gut. When it comes to difficult child's we've researched, fought, cajoled, etc. when we feel that someone's blowing smoke up our "pattooties".

GG: if something's not right, then something's not right. She could be suffering from depression, addition, dependency, dimentia, early onset altzheimers, etc. The medications could be helping or hindering. If YOU don't feel that things are right, you owe it to yourself and your mom to go with her to her next doctors visit, sit in the exam room and ask anything you damn well please.

This is NOT a shot at any of the husband's on the board: Dad's probably so terrified watching the love of his life deteriorate that he's frozen. He doesn't know what to do, who to talk to, what's up, what's down. You didn't mention your parents age, but he's watching the one constant presence in his life drift away. He's scared.

Again, no disrespect to anyone intended...sometimes it seems that I step-back and analyze a little too much and unintentionally offend.

Beth
 

DammitJanet

Well-Known Member
BBK, I am not mad at you...lol.. This is just a passionate subject to me because it hits so close to home for me. It obviously hits close to home for you too. I know you didnt mean to upset me, I didnt mean it that way...I was just clarifying that GG didnt upset me that your post did. I, along with a ton of people who take narcotics for chronic pain, get really upset over the addiction/dependence controversy.

This is as hot a topic on the boards for fibro/CFS/ME as the subject of saying we are drugging our kids into submission does on this board. It brings out the same knee jerk response.

GG...maybe I can more calmly reply to you now that I have had time to cool down after taking a short drive...lmao.

I know there are so called experts out there that say all sorts of things about fibro. The truth of the matter is that no one really knows much about it. No one knows why we get it, what is going to happen with it, if it is going to progress, if we will get better, nothing!

No one knows how to really treat it, how to make us better, not even what caused it in the first place. We are really lost. Im sure your mom has seen a ton of doctors to get to this diagnosis. She probably has a rheumy doctor, a general practioner or family doctor, a pain specialist, and maybe more by now. She has probably gone through many more doctors trying to find out why she has all this pain and what is wrong with her. By the time the diagnosis of fibro is made, almost everything else is ruled out.

We are left to search and figure it out for ourselves what we can do to make things better and live as best we can. Many of us turn to the internet to look for ways that others have found to try and get relief. That can be from massages, PT, water exercise, chiropractic care, medication, supplements, diet, and other protocols.

From my experience, and from what I have seen of many others, fibro gets worse. It can go into remission in SOME people but that isnt the case in all people and that is normally in the early stages of the disorder. When you get into the later stages, folks are normally pretty well down for the count. Other things go along with fibro too such as osteo arthritis, herniated disks, IBS, other gastro problems, all of which can lead to pain and disability.

The true experts on fibro are the people who have it themselves and so far, all we have found is palliative care. We do the best we can to live as full and rounded a life as we can but sometimes we have to give in to the disease. We have to live our lives around it.

I hope I am making sense.
 

Hound dog

Nana's are Beautiful
I didn't read thur all of the replies, so if I'm repeating something forgive me.

Has your Mom considered using the pain patches instead of taking the medications orally? It's the same stuff in patch form.

The plus is, she won't get "high" from it, but it will help manage the pain. Most ppl I know who are using them can still function fairly normally (no apparent effects from the pain medication) and seem to actually like the patches better cuz it gives them a better quality of life.

Your Mom's disorder is extremely painful. Yes, she's probably dependent on her pain medications, especially if she's been on them for some time. But she also Needs them for a physical condition that is dibilitating. So you really just can't eliminate the medications. A darned if you do, and darned if you don't situation.

Are you asking if the pain medications are making her mental health issues worse??? If you are, then my answer would be that they most likely are. Odds are that the morphine and the vicodin both have her inhibitions at an extremely low level. Plus the medications are affecting her judgement, perceptions, and such too.

You can see this sort of delimma with any painful long term or terminal illnes.

Maybe you can suggest to your parents about asking the doctor about the pain medication patches. You could use the whole better quality of life angle, instead of the worry of dependency.

Hugs
 
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