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Posted 4/4/2016 10:43 AM (GMT 0)
I am 65 and live alone. I am totally debilitated with fibromyalgia and I am afraid that my home is falling apart. I have been unable to properly clean it for four years, I am afraid of looking like one of those homes on Hoarders. Getting up and going is hard, but I do get out of bed after I sleep, have some coffee, and then all I can do it sit in my zero gravity chair. Keeping myself clean is not done on a regular basis. I just cannot get around or out. My only social life is on social media, and that's not very much. I am generally not well stocked with groceries so I don't eat all that well, and preparing "a meal" is something I can no longer do. Just getting something to eat is a chore and then dishes don't get done. I've resorted to using paper plates, etc. because I can't keep my kitchen clean. I haven't filed a tax return since 2012, I am overwhelmed with my disabled condition. I desperately need help and Ive checked with our local senior citizens facility, but can't find anyone; I am so ashamed of the way I live...or actually do not live. I have some big projects like cleaning out closets, getting rid of stuff. I cannot afford a "cleaning service" as I am on SS, medicare and do qualify for some help from the state for my medications; food stamps have stopped. Any ideas on how to find a nice person? I thought of craigslist, but I'm not so sure about that. Thanks for any ideas.
Posted 4/4/2016 12:00 PM (GMT 0)
Hi, Laproc, and welcome! There is a service called Meals on Wheels who come out Monday through Friday with a hot meal. You can google them and see which one is closest to you and then call and find out all about them. I don't have any suggestions for someone cleaning you home unless you call a cleaning service but they can be expensive. If you have a senior center in your area, call and see if they have suggestions in this area.

Since you are on Medicare, I would highly suggest you see a board certified rheumatologist who treats fibromyalgia patients. Ask first because there are still doctors out there in the Dark Ages when it comes to this illness. You very well could have something else going on along with fibro that is causing all of these problems. This happened to me a few years ago. I got so I almost couldn't walk because of pain and needed two canes to get around. I saw a rheumatologist and found out I also have ankylosing spondylitis. I was put on medication and now I'm walking all over the place. I'm heading to a Super Walmart this morning! And I'm older than you are. I'll be 69 later this month and I also live by myself. So please get checked out. I really haven't heard of a fibro patient being this debilitated.

But, part of the problem is you are barely moving! If you sit or lay too long you will be stiff as a board and have more pain. Really try to get up and walk around for a few minutes and then rest. Do this several times an hour. Hopefully you will get stronger and begin to have less pain.

I walk daily for at least a half an hour as a gentle form of exercise. When I started doing this, I could only walk four houses down and had to turn around and come back. I was walking with a cane, too. Now I walk daily with no cane and with no difficulty. I just had to make the effort.

As far as cleaning, I choose something and just start. Pick a corner of a room and clean that. Or maybe dust a room and tomorrow vacuum the room. If vacuuming is hard for you. Vacuum part of the room. Rest, and go back to it. This is called pacing yourself. You could find you get stronger and can do a little more each day. I do take care of my home plus I garden and these activities keep me loosened up and moving. Yes, I still have pain but I'm functioning.

Please don't let fibro take over your life like this. It will,if given the opportunity. Walk, do stretching exercises and keep a positive attitude. What you believe becomes your reality. Tell yourself that you can do this. I've done this so many times in my life. I've done things I didn't think I could do with fibro but I tried anyway and found out I really COULD do it.

Do you take medication for fibro? I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that has made a significant difference in my pain. I walk and swim in warmer months and pace myself when doing things.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. There also are links about the supplements I mentioned and how they work in the body plus a good link on how to maintain a positive attitude when you have chronic pain. All of Fibro 101 is good so do read it.

There is also an excellent link that I posted yesterday on the forum. I will bump that up for you. I put a thumbs up icon beside it so people won't miss it. You will learn so much from that link.

I do hope you wil see another doctor and hopefully get help with your pain. Once you get that under control and start walking, moving, and stretching, you will get your life back. I know you want that but it does take work. This will also help with depression.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine/blue]
Posted 4/4/2016 8:56 PM (GMT 0)
Thanks for responding. I have called our senior center, and yes they do have meals on wheels. My concern is their meals may not work well with my diet. I have to stay away from carbohydrates like bread, potatoes, rice, etc. I'm not big on throwing out food especially from a non-profit. I probably should see if they have a menu and verify, but I just assumed their meals would include those things.

I have seen a rheumatologist who was recommended for fibro. I saw my first one in 2005 in another state, but I was able to keep working, it wasn't as bad, but confirmed. I recently saw another one as I had a couple positive labs associated with Lupus (double strand DNA or something like that), but I don't have that given I don't have other labs that would confirm it according to the rheumy. We are still settling on fibro. I was prescribed Gabapentin, but I found myself losing my balance and being very startled by common sounds. I had also just started the antidepressant and klonopin so we could not tell what was causing what. I did not move forward with the Gabapentin, and those symptoms went away. The klonopin seems to help with sleep (which was why the rheumy prescribed the Gabapentin), but as with any med like that there are other side effects. I have concerns about becoming addicted or getting into that serotonin syndrome. I seem to not be a fan of taking drugs.

I have had back problems for 25 years, and always worked on them with exercise. A couple years ago my orthopedic doctor sent me to a pain clinic where I tried epidurals, facet blocks; probably four or five over a two year period. They just didn't do much to address the head to toe pain associated with fibromyalgia.

What kind of medication do you take that has allowed you to walk all over? I have tried norco for my back, but I didn't like the side effects. I do take ibuprofen occasionally, I have concerns about taking it daily. I also take magnesium, fish oil, probiotics, etc., it does get expensive.

I did finally see an endocrinologist a year ago who did find I had hypothyroidism and taking that hormone has helped, especially with back pain. My pain doctor said the thyroid issue explained a lot. Also taking Vits B12 and D have helped. I had never had those tested, and I was low.

Yes, I believe I kept things a bay with a lot of exercise, I was always very active, but it seems the past couple of years I just don't seem to find the mental stamina to force myself; maybe I have given up? In November I decided to see a psychiatrist and started an anti-depressant again, with no effectiveness he add lithium to boost it. After five months I'm not seeing any results or changes. The lithium aggravates the thyroid and the endo increased my levothyroxine.

As far as cleaning, I think I let things go for so long I am overwhelmed and the small efforts just don't make a dent. I need to find some help and I have to work on doing that.

I read Fibro 101 and the other link (the one you said you bumped up today) last night, I was on the site all night when I could not sleep and read quite a bit. I finally posted around 5 a.m. after I was looking to see if there was a thread addressing getting help for daily living issues. I've been reading and researching for years.

I believe my depression is very bad and could be the biggest part of my issues right now, but meds can't do much for it because it comes from not being physically able to do much. The depression has led to so much more isolation.

A lack of energy seems to bother me more than pain and weakness. I was better able to deal with pain, but I can't work through the fatigue. It has just been difficult to keep up with the fight and maybe I have just given up. It has been such a constant battle with not a whole lot of results.
Thanks again, Laproch (I don't know how or why the "h" got cut off, but it's no big deal)
Posted 4/4/2016 9:33 PM (GMT 0)
Just a thought on help with cleaning, do you have a church you go to or one nearby? Sometimes youth groups will help seniors with such things. Or maybe a high school or college where the students need volunteer hours.

I don't know if you have tried these searches, but here are a couple of sites to help seniors locate services:

eldercare.gov/Eldercare.NET/Public/Index.aspx

www.seniorliving.org/retirement/resources-surviving-social-security/

Have you told your doctor about your difficulty with basic living skills? Sometimes doctors can refer you to a social worker or social agency that can help you find the care you need. I also know that some (I don't know if all do) Meals on Wheels provide diabetic meals, which would be low carb.
Posted 4/4/2016 11:53 PM (GMT 0)
You could still have lupus. Lupus is diagnosed by a list of 11 indicators. To be diagnosed you must have at least 4 of the 11. Positive blood work is one of the 11 indicators.

My blood work says no lupus, but I meet 4 of the indicators on the list so I was diagnosed with lupus.

Try a different rheumatologist again.

You sound a lot like me when I get depressed and feel overwhelmed. However, staying in a recliner all day long is bad for you. If your back is that bad see if you can get a support brace.
Posted 4/5/2016 12:40 AM (GMT 0)
Hi LA, Here's my opinion. I'm 53, but I care for my mother of 74 and is in a similar condition to yours. Anyway, I would retry the Gaba or Lyrica. Your symptoms were caused by the anti-depressant. Also, at 65 DO NOT worry about becoming "addicted" to meds. As we age, we become more dependant on those things that keep us alive. It's just part of life.

Myself, at 53, I'll take whatever is necessary to continue to work and take care of my family. Sure, there may be long-term effects, but we all know where we'll end up in the long-term.

That's my two cents: retry the antidepressant and some form of current fibro drugs. Lyrica, xanax, tramadol, keep me working 60 hour weeks. Without them, I would be in bed all day. It's a VERY easy decision for me...
Posted 4/5/2016 1:17 AM (GMT 0)
Great ideas from austenfan for orgs to contact...

Also sherrine ideas for pacing..when i am in a flare..i will work a little and take a sit break..then get back up and work a little more,

But seeing you are getting somewhere is inspiring..

I use ribose to help with energy but it is expensive ..i use a powder form mixed w water..without it i feel like i am wading in very deep water...
Posted 4/5/2016 3:02 AM (GMT 0)
Now I don't have a clue how to respond back. I thought I sent one to thank ausenfan for the great links and ideas, but I don't know where it went.

Thank you to everyone who has responded with different insights. I'm going to just keep plugging along trying everything.

I'll look into the ribose, I really need the energy!

I only have two indicators for Lupus, so they are not making the diagnosis. The rheumy I saw is known for addressing Lupus, fibro, etc. I got the referral from a friend who has Lupus. Maybe I am working towards it.

Thanks again to all.

I managed to keep working until 62 and then I went downhill fast which caused huge financial problems which in turn contributed to depression. It seems as long as I could keep busy with work (I was a teacher) my mood was okay despite fibro symptoms. Thank goodness one is eligible for SS at 62.
Posted 4/5/2016 5:09 AM (GMT 0)
I get my ribose from better health international..its less expensive than the name brand corvalen m .. But yes reserach it first .. I read about it two decades ago in a health newsletter about fibro..and have taken it ever since..it helped me stay an active mom for a long time..

If you start taking it can take a few weeks to notice the difference. So you have to hang in there...

I still have nasty flares which can be quite challenging ..but i keep house, laundry and stay as social as i can. I have to push my self to do it...my yardwork goes really slow, but hey ots always there waiting...
Posted 4/5/2016 12:16 PM (GMT 0)
Laproc, it would be good to be rechecked. Fibro isn't considered to be a progressive illness. When I went downhill fast with my pain and got so I almost couldn't walk I headed to a rheumatologist. I understand you have a good doctor but do they know you have gone down health-wise so fast? Fibro isn't considered to be a progressive illness. It really sounds like you have something else going on too. Have you been checked for Lyme disease? That has many of the same symptoms as fibro and you can have fibro and Lyme at the same time.

I use ibuprofen, Tylenol, and the muscle relaxer to help with my back and leg pain from ankylosing spondylitis. When I was diagnosed with fibro 29 years ago it was called fibrositis. They thought it was inflammation of the muscles, tendons, and ligaments...hence the "itis" at the end of the name. They have now found out it isn't an inflammatory illness. Anyway, I was given ibuprofen right from the start. Ibuprofen was still a prescription medication at that time. I took the maximum allowed dose every day for years...2,400 mg...because my pain was so intense. I did develop an ulcer and stopped for about a month but had to start back up. I was fine for years and about four years ago I developed a bleeding ulcer and had to stop taking NSAID's again. I stayed off them for close to six month and that's when I got so I couldn't walk. My Internist tried me on Tramadol and then tried Vicodin and neither touched my pain. I saw the rheumy and was diagnosed with ankylosing spondylitis...a very painful disease of the spine...and also sacroiliitis. He wanted me to go on Remicaide infusions and I wouldn't do that because of my family medical history. (My Internist agreed with my decision too.). I asked about the muscle relaxer and they prescribed it for me and it really did help but I still needed ibuprofen.

By the way, I need ibuprofen because I have other illnesses that ARE inflammatory illnesses along with fibro. My rheumy said I've had ankylosing spondylitis for a very long time but kept it under control by using ibuprofen. So, all of my pain for all of those years wasn't all caused by fibro!

I discussed this with my Internist. He is affiliated with a medical school in my area so he really is an excellent doctor. We both agreed that it was a quality of life issue for me. So I started taking ibuprofen again and he prescribes another medication to help protect my stomach from ulcers. Plus I'm careful to take ibuprofen with food and I've been doing this for four years with no problems. I was taking three tablets every six hours around the clock..for years.

about 1 1/2 years ago I started craving Kosher dill pickles and green queen thrown olives. I started eating quite a few a day and in a few weeks started to forget my ibuprofen because I wasn't having as much pain. After checking out these things on the Internet I found out they were helping me with pain and also my diabetes. Olives have a chemical in them that works like NSAID's. Bottom line...I now take three tablets of ibuprofen twice a day! Plus. I was able to eliminate my insulin shot and my blood sugar numbers are excellent. I write about it in the Diet and Food Discussions thread in detail. That's where we keep food discussions. I'll bump that up for you just in case you are interested.

I know you are hesitant to take medication...we all are. There isn't a person on this forum who wants to take medication but it is a quality of life issue. I want quality of life and I do have it. I keep moving because it helps with my pain AND it helps with my energy levels! Yes! It surely does. Look. You are listening to someone who hates exercise. I don't feel like heading out the door for my walks but I know by the time I get back home I will have less pain and more energy and my mood is better. I'm ready to get moving! When walking I see all the beauty around me and I just count my blessing.

Try to focus on all the positive blessings in your life. I know you have them...everyone does. Your depression I think is caused by your situation, not a true clinical depression. My husband suffered from clinical depression and had to take medication to even out the chemicals in his brain. But I don't think that is the case with you. It's easy to become depressed when you have chronic pain and feel your life is over because you think you can't do anything.

Thinking. What you think becomes your reality. I dealt with this when my husband died suddenly. I went into a pretty deep depression and felt just like you are describing. I couldn't stop crying and I definitely wasn't eating or taking care of anything. It just was overwhelming to me. But I recognized what was happening and I was only 50 years old and had a lot of life ahead of me. Of course the doctors were trying to get me to take antidepressants but I refused because I knew I was a positive person underneath the blanket of depression.

I decided to fight back! I literally made myself get up and get out of the house. I made plans with friends even though I didn't want to leave the house. But I started having a life again. Sure I was in pain but I was in pain sitting home! I might as well go out and have some conversations and some laughter in my life. And slowly but surely the depression started to lift. I became more interested in taking care of myself and my beautiful home. And now my life is "normal" again. I look forward to each new day with anticipation and I don't dwell on my pain or negative things in my life. I just deal with them the best I can and smile because I'm winning this battle!

So please get checked out again or get a second opinion. Doctors can miss things. Also start moving again. Walk around the house. Pick a room that you spend a lot of time in and clean a corner of the room. If you do this, in four days you will have a clean room and then you can move on to another room. As you see the progress you are making, it will make you feel better...happier...and that will help lift depression. It can be done because I have done it.

Refer back to the link in Fibro 101 on how to maintain a positive attitude when you have chronic pain. I have done that many times and they are wonderful suggestions. I hope you have a much better day today.

By the way, here is the link that talks about pickles and olives.

www.healingwell.com/community/default.aspx?f=24&m=3274470

Sherrine
Posted 4/5/2016 12:40 PM (GMT 0)
Laproc: You might want to check with Catholic Charities in a nearby diocese (or archdiocese). I believe they help anyone of any denomination in various ways.

I hope things are better for you soon.
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