Sister In Trouble

[purpleiris]

My sister suffers from what is thought to be Fibro & depression. Currently she has extreme fatigue, too weak to get out of bed, some confusion, lack of concentration & severe back & leg pain. Meds: Morphine 90-180mg, Percocet 5mgx4, Ritalin 10mgx4, Prozac 80mg, & Xanax 0.5 prn up to 4.
On 2-4 she was suicidal. We took her to the local hospital. Police were called.
Normal for here. She agreed to be transfered to the pysch ward of a larger hospital to be treated. They treated her to 5mg percocetx3, 100mg prozac, plus trazadone, cymbalta, abilify and naproxen, doses unknown. No Morphine, etc. She does not know what to do next. She feels something besides Fibro is going on. Doesn't know who or where to go to find out. She says she feels like she needs to be somewhere she could be treated for physical & occupational therapy. Also have 1 Dr. be coordinating her case, figuring out what is really wrong. We live in a small town in south central WI. Madison is closest, but Milwaukee, Chicago, or Twin Cities would not be too much of a stretch.

Thank you to anyone who has any ideas/suggestions. Hope someone will reply soon.

purpleiris

[Fayelle]

Wow thats an awful heavy drug regiment.....

I am concerned about her being on that many narcotics.....No wonder her mind is so restless....That ia entirely too many sedative medications to be on for something like fibro alone......

Depression is common in pain conditions, but I am with her on thinking its got to be something else along with potential fibro....

For one thing fibro is a trigger condition and there is generally an underlying problem that needs to be treated before there can be fibro control....

Who decided on a fibro DX, and what tests were done to rule out other conditions before this DX? Was a tender point test performed? How long has she had the symptoms of fibro before her DX?

Fibro can be debilitating but I am not sure a pain med regiment that strong is a good idea due to the many issues surrounding narcotic pain med usage....Narcotics alone carry a whole plethora of side effects and withdrawl symptoms......

I think I would be asking some pretty serious questions about the testing that brought them to a DX of fibro, what the underlying condition is that triggered the fibro, what the expectation for treatment is for the fibro....ETC....

It also sounds like she needs a medical advocate that can help in her treatment decisions, it sounds as though she is far too distressed to make conscious decisions on her own. It also concerns me that she is enmeshed in the mental health side in this delicate condition.....

Start asking serious questions and demand some serious answers.....And then do your own research and make yourself knowledgable about the things they are suggesting is going on with her. As well as med side effects, this is a big one especially if she is dealing with fibro....People with this condition are typically sensitive to medication side effects, moreso than the average person. They are also prone to sensitvity to chemicals, food allergies, anxiety, light sensitivity, etc.....Another thing to consider is that anxiety will enhance pain, as well as other symptoms causing a cycle of enhanced symptoms and adding more anxiety......

Many things needed to be ruled out before this DX so push the issue on knowing what was ruled out for her before the DX was given......

Fibro is an easy condition to blame a good many things on because it overlaps with so many symptoms that its easy to just say its fibro and then push pain meds onto the patient so that they are satisfied rather than finding what is really going on.....Fibro has no definitive test to rule it in, so testing to rule things out is essential......

Even still people will go for decades with a DX of fibro only to find out later that it was something else like lyme disease.....

I feel for you and your sister, I have been in that position before.....It is not pleasant.....

Feel free to ask anymore questions that may come up.....But most of all research research research.......Learn all you can.....

Wishing you the best!

Fay

[Whisper]

My sister suffers from what is thought to be Fibro & depression. Currently she has extreme fatigue, too weak to get out of bed, some confusion, lack of concentration & severe back & leg pain. Meds: Morphine 90-180mg, Percocet 5mgx4, Ritalin 10mgx4, Prozac 80mg, & Xanax 0.5 prn up to 4.
On 2-4 she was suicidal. We took her to the local hospital. Police were called.
Normal for here. She agreed to be transfered to the pysch ward of a larger hospital to be treated. They treated her to 5mg percocetx3, 100mg prozac, plus trazadone, cymbalta, abilify and naproxen, doses unknown. No Morphine, etc.

Sorry to hear of your sister's situation. Although I am no expert on medications (I myself, don't take any) But to me, it seems it's no wonder she can't get out of bed, or has confusion and lack of concentration!

Sounds to me (and I repeat, I am no expert on meds) like she is over medicated. I think having one doctor to review her case would be the best solution. This way there isn't anyone else coming along and maybe giving 'conflicting' drugs.

Wishing you the best,
Lorraine

[BrokenBladder]

I must agree with everyone else here. FMS is an underlying condition to something else, so I feel your sister is correct in feeling like something else is going on. I would think her original DX of FMS came from a rheumy. Is there anyway that you could contact them? Your sister can get copies of her medical records from there and you might find some valuable info.
What makes your sister FEEL like something else is wrong? Is it the pain in her back and legs? Perhaps there's a problem in her spine, which could be the underlying condition for her FMS.
I feel for you, please keep us posted on how your sister is doing. She does seem to be taking alot of medications that could actually be making matter worse for.

[purpleiris]

All of her meds, except xanax, prozac, and ritalin (which come from her psych), are all being prescribed by her pc. I believe I have seen changes in her personality since she was put on ritalin about a year ago. Her home life SUCKS; her husband virtually ignores her, he drinks too much, and is psychologically abusive. She has a 22-yr. old son who lives at home, who always seems to be in trouble; and a 16-yr. old son who is a great kid. The husband does practically nothing at home. I have asked her if she wanted to come and stay with me for a couple of nights, but her husband is totally against the idea. It seems like the husband is jealous of me and my husband. As far as I know, her pc is telling her she has fibro. Today, when she asked her pc for a referral to a neuro, the pc refused. Her pc also raised her dosage on the morphine, even though my sister was able to drop down on the amount needed. I have been encouraging her to go to a rheumo, but she will need a referral due to her insurance. She has seen an occupational med dr, maybe she would give her a referral. Does anyone have a suggestion as to which dr would be best for her? I once heard of an occupational/rehabilitation center near Milwaukee. Has anyone heard of such a place?

Best wishes, and thanks to all who replied. I appreciate your help and concern,

purpleiris

[Fayelle]

It sounds like she needs a new Primary care doc if he refuses to send her to a neuro......Unless she has had the essential ruling out process that goes along with getting a fibro DX....

A neuro is actually essential in ruling out neurological disorders that could have the same symptoms as fibro.....Fibro has many overlapping symptoms as other more significant things.....

If she has been tested for things though the truth could be in what you have mentioned about her home life.....

Often times emotional problems will manifest physically......However emotional problems that become a physical manifestation should probably not be treated with morphine.....But then again I am not a doctor and am guessing on that front.....Perhaps that is why the cymbalta.....

It is possible that her body is telling her that she is in a toxic environment.....Chronic stress can in fact trigger fibro, and it can cause the fibro to flare out of control if the stress is never alleviated.....Depression and anxiety can in fact cause physical pain.....

Emotional issues are very disabling physically....And if she is unwilling to address her own home life issues and fix those for herself then she wont be feeling any better any time soon.....

My fibro was most likely triggered by extreme emotional distress as a child, I went through much of what you have described your sister as going through in my 20's due to my childhood....It is hard to watch but honestly if it is the home life that is causing these things it is something you wont be able to help her with.....She needs to be actively dealing with the emotional issues if she is ever going to heal herself......Only she can fix these issues unfortunately.....

There are cancer survivors I have spoken to who freely admit that they think the cancer was caused by toxicity in their emotional lives....The mind and emotions are powerful things.....My father survived cancer for a really long time, but he was in and out of remission many times....In my opinion his toxic lifestyle and inability to deal with his past created his cancer, and then helped keep it alive.....He died at the age of 54 still unwilling to heal his emotional self....His body merely wore out.....It was tough watching him die, and tough for me to accept that he never reached out to me to heal the damage done between the two of us when I was a child.....

To this day I still struggle with my own personal demons that stem from my toxic childhood.....It has been a tough road relearning how to cope, learning what are unhealthy relationships, and how to heal myself.....Today I struggle with the fall out of these things....I am a type 2 diabetic, I have fibromyalgia, hypothyroidism, and live on up to 12 to 15 medications a day.....I am a 33 year old woman......

The one thing that helped me was when people stopped enabling me to be a mess, I went through some major emotional upheavals and had to go through serious mental housecleaning. During that time my mother stopped talking to me because I was so angry with her.....Honestly it helped me realize that only I could make a difference in my own life as an adult......

So I hate to say so, but its possible the doctor is going along the right path with the way he is handling it.....But only if the ruling out process was followed.....The emotional troubles could very well have been her trigger, and unfortunately that will be entirely up to her to heal......

Its hard to watch a loved one suffer, but sometimes all you can do is watch.....

Fay

[Tootsie]

Reading between the lines a bit, I'm inclined to think that your sister really wants out, of the home situation, she finds herself in. No doubt, she feels helpless to change it, because she is financially dependent on the husband who ignores her. The fact that she wants "to be someplace for physical and occupational therapy" is the clue for my conclusion.

What is the psych doing for her besides giving medication? Does he/she, talk to her, ask how she feels about her husband's neglect? It's called cognitive behavioral therapy.

While all of us, with the fibromyalgia diagnosis, have some degree of pain at some point during the day, the key to coping with it, is to find something, or some way, to replace the pain with an activity. From what you describe, your sister is totally overwhelmed with the depression. The worst thing you can do is stay in bed as your muscles deteriorate rapidly and all your stamina is replaced with overwhelming weakness.

There is a book called, "Feeling Good" by Dr. David Burns, which basically says, that the key to coping with depression is to control your thoughts. It gives work sheets, and ways to objectively work on these things. It was used in a class I took, taught at the HMO, where I receive my medical care.

My own experience with depression, is that it occurs when I become passive, give up, and want someone else to solve some problem for me. Once I become angry, and have help planning, how I am going to resolve the difficulty, I get well. I have never, ever, taken medication for depression.

Like so many others with fibro, I have found, that any medication prescribed, gives me more symptoms and side effects than I am willing to cope with.

I think that perhaps the easiest referral right now is to suggest that your sister contact Al-Anon. That will deal with the husband who is a drinker and give her some support to deal with him. Once she feels she has some kind of control over that issue, she may be ready to tackle something else. I have no idea why she is taking narcotics. They do not help the kind of pain associated with fibro.

Has she had a good physical with basic laboratory tests? Could she return to the occupational medicine doctor without a further referral? Why was she sent to an O. M. doctor? Is she on disability from work? More than anything, I think she needs to see a good internist, board certified, to help sort out whether her physical pain is aggravated by the emotional component. I agree with the comments made by others here. Cheerio.

[purpleiris]

I totally agree with what you are saying. She desparately wants to keep her family together, although I do not know why she wants to stay with this guy. She is on disability from work. She went to the o.m. dr without her pc's knowledge. I do not know why she needs a referral to see another dr, especially if she saw the o.m. I do not know when she exactly began taking these meds, although I would guess to be about 4 yr. ago. She has had med workups, and she thinks her pc thinks most of her problems are psychological, but still dispenses her the narcotics. We live in a small town, and she has a therapist, on a regular basis, but her psych only comes here every 2 weeks. She has not confided to me exactly all she has discussed with the psych. Al-Anon was suggested to her, but she decided not to pursue it. We also have a service for abused women here, and think may be helpful.


Thanks,


purpleiris

[purpleiris]

Fayelle,

This is what I have been telling her all along. That the stress at home is contributing to her being sick. I think the dr just give her meds that will placate her. She was almost off all her opiates, then the dr just put her right back on them.

Thanks,

purpleiris

[Fayelle]

One thing you might mention to her is obtaining a new primary care doc, a fresh view of her situation might help lead to a quicker resolution, and keep her off of the narcotic meds.....

I am sorry you and your sister are experiencing these things......It's not pleasant......

Feel free to keep coming back here for support if you need it!

Wishing you the best, and hoping for some resolution to the problem for you both!

Fay

[Tootsie]

Last evening, I had another thought about your sister's situation. Have you discussed with her, what her inaction about her living situation, is doing to her children?

If her current husband is the father of her children, they have already inherited the genetic disposition to chemical addiction. Her depression and lack of an active resolution,to the things contributing to it, does not signal to the children, that it is possible to live happy, successful lives with such a diagnosis. There are many, many successful people who have been open about their need for treatment for depression. That treatment requires an active participant, willing to pursue all avenues, from medication, to therapy, physical activity, etc.

I always wonder about those who refuse to take advantage of useful groups like Al-Anon. It is free, unstructured, and confidential. While it may sound cruel and uncaring, I have to ask, does she really want to resolve her difficulties, or is their some intrinsic value to her, in wallowing and whining about them? Only she can answer that question, hopefully with the help of a skilled professional. Cheerio.

[Fayelle]

It is frustrating isn't it.....

I think the biggest thing I learned over the years about it is that especially with chemical dependancy in the family there are roles for each family member....

Each willing participant gets a pay off of some sort while remaining in the relationship, it is in all likelyhood a dysfunctional pay off but something they get out of it none the less.....

In these situations its about hitting a bottom and being done with the behaviours, and wanting a true change in the lifestyle....Often times people will not seek the appropriate help because of fear, and whatever they gain out of the current situation....Unfortunately there are some who have to die in order to hit that bottom......Like my father, he was never quite done with the dysfunction enough to want to seriously change it....He was in therapy at times, he was in cancer care programs at times, and I never ever closed myself off to him completely either, he also had plenty of church organizations offer to be there for him.....He simply never got to where he was ready to take the changes and run with them.....He became too comfortable in the chaotic world of his dysfunction and never knew what to do outside of that......He also knew about AA and Alanon as my mother and step father were frequent members for many years. My father saw the changes, but never felt inclined to follow suit.....

Often times it will take something very drastic to cause people to hit bottom.....Sometimes it is a simple push in the right direction, but more often it takes a life altering problem to arise.....

As far as Purpleiris sister is concerned well even the medical stuff is some sort of payoff because she doesn't have to look internally to manage the pain, the neuro symptoms etc.....As long as there is a question of her health being the issue she never has to address the reasons for the health being a problem.....At least this is my guess.....

And Purpleiris I do hate to say things like that, I also hate to say that if it is related to her current choice of lifestyle and not some debilitating disease your best option is to refuse to be an active participant in her dysfunction....Until someone refuses to accept her making bad choices by refusing to engage in the dysfuntion and the martyr role she wont get any better.....Its a dance, family and social dysfunctions always are an intricate system of games, manipulations, and attention seeking behaviours......And the reason people do it is because it works for them and they get what they want even if it is in a dysfunctional manner.....

It also occurs to me that her health issues are a manner of attention seeking since she feels ignored by her husband, and people respond when she is sick (which probably occured in her childhood as well).....However on that same level if she is willing to let the mental health world become involved she might be ready to start making some decisions to change her current situation even if it is as simple as starting an antidepressant and seeing a therapist on a regular basis.....Tootsie makes an excellant suggestion in her seeking help through Alanon, my mothers life drastically improved once she started working within that program.....And she never changed who she was with or where she lived, or anything......She began changing within and then the outside either adapted to her or left her alone, interesting how that happens.....

In all honesty my help came when I was done being a mess....Then for some time I looked for someone to blame, and finally I realized it was my job to fix the issues and take responsibility for my own happiness and well being.....(still working on that one :D )......Suddenly my life is much less complicated once I stopped making it so complicated.....Suddenly things are much less chaotic because I stopped inviting and creating chaos.....Now my health is not a question, at least for the most part.....I have something I have to manage, but it can only be managed if I am taking a constant internal inventory and making sure I am not playing old roles....If my internal life is a disaster and out of control, my fibro acts up.....If I let emotional issues rule my life then it will flare out of control......

Purpleiris your sisters body is screaming at her to pay attention, and it means internal attention it seems......Hopefully she wont crisis herself into a more severe disease......It occurs to me that you might benefit from some of what the Alanon and AA program has to offer in terms of learning how to manage codependant people and learning to recognize true crisis vs attention seeking manipulations.....As well as learning how to be helpful to your sister in ways that will truly help her, while keeping your boundaries strong.....Its hard when you love someone in these situations because you want so deperately to rescue them and solve it for them.....It broke my heart for so many years knowing I could never ever save my dad. Finally while I sat by his side for a week as he passed away I felt all of those old emotions, resentments, and fears......plus the rejections, and the old pain of abandonment rush back in waves, knowing I could never ever change him, and I had to accept him but on my terms......That I could never save him, that was not my job......

Love can be brutal....

Fay

[purpleiris]

My sister does see a therapist on a regular basis, and sees a psych when the dr is in town (every few weeks). She is not just seeking attention. She is trying her best to find a neuro or rhermo to do a workup, but her pc will not giver a referral (still unsure why). She was doing fine about six months ago (exercising regularly, volunteer with Red Cross, being chosen for a personal makeover on local TV), but her husband was acting the same then as he is now. She started to show signs of decline shortly after the holidays. Her husband is the biological father to the youngest child, but not the oldest. The younger child is doing great in school, and is very helpful around the house; however, is being too sheltered from her problems -- not helpful. Her oldest child has been in trouble with the law, but not drug related. I do not think the youngest child has been in any trouble in the past. Besides the depression, the dr are just not catching something else that is happening. I recently found out that she went in for a pelvic untrasound for pain. She had a partial hysterectomy some years ago, and one ovary was removed. The dr could not see the remaining ovary on the ultrasound, so maybe there is a problem there. She has had definite personality changes since being put on ritalin. We are looking for a place where she can get some physical/occupational/psychiatric therapy, but having a hard time finding a place that covers all three areas. Regardless of whether her pain is psychogenic in origin, pain is pain. Studies are finding that stress hormones from pain can make you physically ill, possibly to the point of changes to your DNA (according to one study). We admit the medical facilities in this town are not very good, which is why we are searching for facilities elsewhere that could help her.

Again, thanks for your concern,


purpleiris

[kathyrooker]

Purpleiris,
More than 9 years ago, I was diagnosed with Fibromyalgia and depression. They treated me with pain killers, muscle relaxants, antidepressants,etc. None of the medicines worked, and some made my symptoms worse. I have seen numerous doctors. Finally, on March 13, I went to see a neuromuscular specialist in Philadelphia. I have Myasthenia Gravis, which is very treatable. I am now much better. My family doctor insisted I had the tender points and the whole nine yards. I knew he was wrong.
I had muscle weakness that made it impossible for me to walk my dogs, curl my hair, lift or carry anything. My vision would become blurry, mostly late in the day(the eye doctor said my vision was 20/10), and my eyes always felt heavy, like I needed to sleep. I needed to sleep 8-10 hours a day just to function. My neck and shoulders constantly ached. Even my arms ached alot. I would get this horrible discomfort in my hips, and sometimes all this kept me awake at night. I was so exhausted, I could only get up to go to the bathroom, and that was a chore. I also suffered from tingling and numbness in my face, legs, arms and hands. I had these funny twitches in my eyes and face, especially if I smiled. My concentration was gone, and I felt like I was drunk (I wasn't taking any medication). My mouth would become sore when I chewed food, and I had difficulty swallowing sometimes. I never felt like I was breathing efficiently, and sometimes I had pressure and pain in my chest or diaphragm. Doctors told me it was asthma, heart problems, pulmonary embolism, etc, etc. Tests proved them wrong. My leg was so weak sometimes that I would drag my foot and trip over it. All these problems would come and go. I never connected all the symptoms, and I kept blaming them on lack of sleep or overwork.
I became so sick in 2006 that I couldn't work. I was watching Mystery Diagnosis when I saw a girl with the same problems I had. She went for years without a diagnosis also. I looked up the disease online and realized this was what I had. It took me over a year to find a neurologist to diagnose me. There are blood tests to test for this disease (AChR and MuSK), however, only 80% of patients have them. I don't. I also believe I have a rare genetic form that I inherited from my mom and have passed on to at least two of my four children. We are going to have genetic testing done over the summer. Doctors told me they had experience with this disease, and in fact, they did not. They did everything they could to convince me I was wrong, including telling me I needed to have surgery on my neck due to mild spondylosis (which is a fancy name for arthritis). By the way, it is perfectly normal for a 46 year old, like myself, to have mild arthritis. It is a part of normal aging, and is unlikely to cause the type of problems I had.
Here is a quote from azmgfa.org: "There are no known links between Fibromyalgia and MG. MG has a known cause and treatment. Fibromyalgia has not yet been shown to have a known cause or a specific pathology or treatment. Some people that I have seen who have been diagnosed with fibromyalgia are in fact significantly weak and with the correct diagnostic tools are shown to have MG. So I would say if there is a lot of weakness then one should look aggresively for MG". Another website, mgfametrony.homestead.com says "Myasthenia Gravis is a highly misdiagnosed autoimmune neuromuscular disease in which communication between nerve and muscle is impaired, causing weakness. Its primary symptoms are erratic."
I hope this information helps you. If this doesn't sound like your sister, look up rare diseases, and research them to see if anything fits. No one should have to suffer like I did for 9 years. I have talked to people who have suffered with other autoimmune diseases for years before being diagnosed. I lost everything, and missed all those years of enjoyment with my children. I hope you find help for your sister.
Kathy from PA

[uvamomb]

In my experience with Fibromyalgia, though that is not nearly the only diagnosis I have, some people have it so badly that they do need narcotics, so only your sister knows how much pain she's in. If she needs the pain meds, then she well may be in that much pain from fibromyalgia.
My aunt is, and she is not one to take medications unless she needs them, but she has no choice if she wants any kind of life.
I agree with the person(s) who said she needs a new primary care doctor first off.
Then, I would get her to a TEACHING HOSPITAL - that has given me more answers that made sense to me than anywhere else. It may take awhile to get in, but just knowing that she is going to go may give her some hope. Also, ask them to put you on a waiting list in case people cancel and you might get in sooner. I recently got into a local teaching hospital the same week because of a cancellation, and I wasn't scheduled til May!
I know this hard on you and the entire family. Search for some support groups or start one like I did. It really helps the patient and her family to know that you're not alone in this.
I bet she has some underlying conditions that need to be discovered and once those are addressed, I bet her fibro, if it is fibro, will get better.
Give her a hug for me and give yourself a bunch of hugs for being a wonderful sister.
Love and God's blessings,
Kathy