Support for Sister

Hello,

I found this wonderful forum when looking for help for my sister who is suffering with fibromyalgia. I thought it might be nice to be a part of the conversation.

A little background...

My sister is 30 years old. She was diagnosed with Interstitial Cystitis (IC) approximately 8 years ago. The IC impacts her life so much so that she was placed on disability for it. about 6 years ago she complained to her doctor about the "classic" symptoms of fibromyalgia. He prescribed Amitriptyline 25mg and she's been on that ever since.

Flash forward to the past 2-3 years. We relocated and she has seen various other doctors for worsening pain and fatigue. She was prescribed Savella, but that put her into what we now call the "Savella Coma" - totally zonked out, sleeping nonstop. At the beginning of this year we saw a doctor who prescribed Flexiril in addition to the Amitriptyline. She was also given Tramadol to help with the pain. That combination helped...a little. But it wasn't long before her symptoms worsened.

The next doctor (the previous Doc left his practice) was horrible! He said she couldn't miss an appointment or he would drop her as a patient (even though we said from the start that keeping appointments could be a challenge. It would be wonderful if you could explain to the pain and IC that you need to be at an appt., but we all know that's not an option.). His subsequent care consisted of a one-week trial of Prednisone. When that didn't help, he prescribed a one-week trial of Valium. None of this helped my sister. She was feeling worse and when we asked what she was being treated for, he said he thought she had Somatoform Disorder. In the end we decided this doctor wasn't right for her (or anyone for that matter) and she was dropped when we canceled her last appointment.

This is where we are now...

Pain and fatigue have been awful. She also hasn't been sleeping at night. I've seen her deal with pain before but it's now at a point that she is reduced to tears. She has always been frustrated by the pain, but she has hit a point where she feels totally hopeless and not like herself. This weekend she ended up at the Urgent Care facility (Saturday) and then the Hospital Emergency Room (Sunday). The pain was so severe in her back, neck, and hip that we didn't know where else to go. She was also vomiting the past four days, but with no fever or bug, it seems to be brought on by the stress of the pain. She was given a few Percocet at the hospital to help get us until we met with her new PCP who we saw this afternoon.

The new Doctor was very kind, performed the exam, and said that what she was describing was classic fibromyalgia. For the past few years, no other doctor would admit as much. They just kept trying to call it something else (she's had extensive work ups ruling out Lymes Disease and the like). So to hear that today was both a relief and a bummer.

Today she was prescribed Cymbalta 20 mg and Remeron 15 mg. I pray that it will offer her some relief, but right now she is at rock bottom. I keep trying to tell her we are going to do everything we can to make her better, but she has been crying all day saying this pain is the worst she's ever experienced (a flare perhaps?). She also says she's never felt this sad and hopeless before. I continue to tell her she will feel better, that we just need to get to the other side of this mountain, but she can't see that right now. I'm feeling helpless. I just want her to feel better.

Apologies for the lengthy post. Thank you to all who took the time to read it. I look forward to learning from you all and hope that my sister might also find support here.

Thank you for the response, couchtater. I think a combination of meds and supplements will be our approach as well.

While we wait to see if the new prescriptions offer any relief I'm trying to help her get moving again. I've seen a number of posts recommending low impact exercise, so we'll be adding short walks to her routine (the past year she's been practically housebound, so we'll start slowly).

Thanks again for the warm welcome. :)

Hi Debbie! Thank you for your reply.

I forgot to mention that we did try a chiropractor last year. While she felt a bit of relief the first time, the second visit seemed to make her feel worse. Fibromyalgia treatment is so hit and miss. This has got to be one of the must frustrating diagnoses a person can receive.

She's been trying to sleep for the past hour or so, but she can't seem to find a comfortable position. If she lays on her side, her shoulder and hip hurts, but if she lays on her back, that bothers her. Unfortunately she feels nauseous too. She keeps asking what she did wrong or what she did to deserve this. I've told her over and over again that she didn't do anything to "give" herself fibromyalgia, but she is doesn't seem to hear me. I've never seen her this defeated. No matter how many different ways I tell her we're going to fight this monster, she doesn't believe that she'll ever get better.

Hopefully I will be able to share a positive update soon, but for now she's in a dark place. I'm going to see if there are any support groups in my area...

Get her some soft body pillows they help cushion and support.
Also memory foam toppers will help a lot.
Heating pads and ice packs will calm some of the pain.

Moo pup welcome ! I am so proud of you for not giving up on your sister. I can only imagine how stressful it can get. I remember those days similiar to your sisters. I have been down that road for years and I thought it would never end. It's the pain that drives all the body to malfunction. I found this forum at a desperate time of my life. I finally can say I have good control over my fibro. I give this forum all the credit for helping me achieve it. I hope you can learn some great tools here to share with your sister.

I am on remron for antidepressent. It has something in it for racing thoughts, so it helps you sleep. I take 30 mg. antidepressent take a few weeks to start really working. Sometimes remron can leave a hangover effect, but i have got use to it. I just drink caffeine in the morning. Remron comes also in a melty tab form. The reason I like it better then the pill because it works so much faster. I sleep very well on it.

The best thing you can do it educate yourself and your sister about fibro. Go buy a book or go on line to find a fibro book. I remember reading my first books. I could see myself on each page. It also had me in tears because I knew I wasn't crazy. Here was all my symptoms in this one book. It validated my diagnoses for me. I had one Dr. Put in his notes the same thing as your sisters (somatoform) . It made me so frustrated.

As you probably know it does take time to find that right combination of meds and treatment. See fibromites are very senstive to meds. So it like a trial and error method approach we go through. I have found out the less meds and more natural treatments work so much better. I have tried about everything out there. The vitamin supplements seem to help the most and exercise.

When I was really sick I didn't want to walk or do anything that had to do with exercise. I began to read about how exercise is the best treatment for fibro. I started very small and before you knew it I was enjoying my walks outside. It really really helps the depression.

Does your sister see a therapist? Since you mention she has chronic depression. My pain management office has one that specializes in chronic pain. I know for myself it was part of my treatment plan for fibro.

I do the following for my fibro. Heat, limit stress, rest when needed, eat healthy, exercise, vitamin D, magnesium, calcium , remron and subutex for pain.

I did want to share with you what I use for my chronic pain. I take subutex for pain control. I get it from my pain management Dr. It has done wonders for my pain. It's less addictive and doesn't get you all foggy in the head. Its very uniquely Made and how it works. I have been on it for 4 years. We all have different ways we control our pain. You just have to find what method works better.

I hope you share this with your sister. Tell her she is not alone and we would love her to come on the forum and visit. The best way to stay connected is read post frequently. Feel free to ask questions or if you just need a hug for the day.

Hi ak angel and AustenFan!

Thank you both so much for your insight and words of encouragement.

My sister was never given a depression diagnosis, but it's clear that she must be struggling with that now. I think we will bring that up to her doctor at her next appointment. Perhaps we'll bring up the subutex, too. She's worried about being in this crippling pain for a month until the Cymbalta takes full effect. She expressed concern over taking something like the Percocet, because one, she doesn't want to just "mask" the symptoms, and two, she doesn't want to get dependent on these pills.

I will definitely try some of the more natural approaches to see if we can't find some relief. Once she's up to it, I'll suggest she come visit the forum. Fibromyalgia has left her so isolated. I'm sure she would be happy to see she's not alone.

I have one more suggestion too, though you may have already tried it. Coke (cola) syrup can help with nausea. It did for me, when I had horrible morning sickness.

Of course, it's just a bandaid, but sometimes that's better than nothing, and it's cheap. At my pharmacy, it's behind the counter for some reason, but it's non-prescription.

Debbie

Oh dear! Well, I hope you can both get some well-needed relief and rest...

And while I think of it, watch out for Ativan.  I know it's supposed to calm people down, but my dad had a really bad reaction to it....(I've read others' posts here, too, that said the same thing.)  It made him paranoiid, and he even had some hallucinations.  Don't want to add to your worries, but just in case - - 

Let us know how it all goes...

Debbie

Hi, Moo Pup, and welcome!  I've heard of Cow Birds but not Cow Pups!    I'm bad but I think you have figured that out already! 

 

Now on to your serious questions.  Not everything is caused by fibromyalgia.  Fibromyalgia is not considered a progressive illness but you are saying your sister is progressively getting worse.  I suggest she see a board certified rheumatologist...a good one...and if  you can find one that also is a diplomate that is even better.  Be sure they treat fibro patients.  Most do but there is the occasional doctor that is still in the Dark Ages when it comes to this illness.

I saw my first rheumy a couple of years ago.  I had had fibro for 24 years and things stayed about the same but then I started getting worse and worse.  I had severe back, hip, and leg pain.  I would get raw nerve pain down my legs and needed to use two canes to walk.  Just trying to lift my foot off the floor to take a step had tears running down my cheeks.  Since I knew that fibro isn't a progressive illness, I went to see the rheumatologist, after doing my homework in finding a really good one.  They took many x-rays, eight vials of blood work, and sent me for two MRI's.  It was discovered I had ankylosing spondylitis which is a painful disease of the spine and also sacroiliitis.  I still have fibro too.  I was put on ibuprofen with food and a muscle relaxer called Robaxin and I am 100% better now.  I now can walk with ease, have a lot less pain, and am living and enjoying my life again. 

So do try to get your sister checked out for other things.  It's so simple to blame any pain on fibro but that is not necessarily the case.

 

She might try taking magnesium malate and vitamin D3.  A deficiency in these can cause more pain and fatigue.  There are links in Fibro 101 all about these and how they work in the body.

I hope she gets the help she needs.  Have her come on the forum and ask questions.  We are here to help people.  Let us know what you find out because we do care about her.  We have been there and done that.

Sherrine 

   

I could hug you all! Thank you for all the wonerful, thoughtful advice!

I plan on finding her a rheumatologist so we can get an expert opinion, too.

Thank you, Sherrine! You made me smile. Moo is what we call our Border Collie pup, so it's a nod to him. He's one of the bright spots for my sister and offers a lot of comfort and love (not to mention puppy kisses!). :)

Hi Mari!

We have two cuddle bugs, too (border collie and rough collie) and one kitty. They are such a blessing!

Well, we arrived back home. She is still feeling very sad, but the pain has calmed down some. We are making an appointment with a counselor in the morning. She also has a follow up with her primary doctor on Friday. The x-ray revealed degenerate disks, or something to that effect. The doctor said there wasn't anything remarkable on the X-ray, but the counselor we spoke to today reviewed her chart and said there was definitely degeneration.

That definitely confirmed a suspicion my sister always had. I'm going to do some research in this department.

Right now our biggest obstacle is the sadness. She said she's always had some level of pain, but for whatever reason, she feels sad. I'm doing my best to encourage her, so we'll see how it goes.

Thanks again everyone. Your posts are very encouraging. :)

Hi Achey All Over!

Nice of you to say "hello," and thank you for the kind words. These last few days have been a struggle, but we see the doctor on Friday, so we'll see how that goes. We want to discuss pain management until the Cymbalta and Remeron kick in. Her pain and discomfort is just too much, and sorry ER Doc from last night, but Tylenol isn't going to cut it.

The on-call doctor called in some Vicodin tonight to help with pain. My sister was a little apprehensive, but I convinced her to give it a try (she's always worried about having a bad reaction to prescriptions). The Vicodin actually helped some and she was finally able to have a proper meal. Prior to that she hadn't eaten in days, just a nibble here and there. We actually had a few laughs and I could see her back to her old-self for a little bit.

Once the pain subsided, she was able to express how much the depression is tied to it. While the sadness comes in waves, it's 100x worse when the pain is present. She agreed that talking to someone would be a good idea, too, so were going to tackle this beast from multiple angles.

Thanks again for all the great advice. I'll check back after we see her doctor. :)