Not sure what to do

General
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Yesterday I went to see my Rheumatologist. I was was very frustrated and upset and disappointed. I am in a VERY bad Fibro and Sjogren's flare right now. It started because I was put on Prednisone for Chron's disease, but when I tapered off of, it threw me into the bad Fibro flare. I've never had a flare this bad! I was already (and have been) in a bad Sjogren's flare for awhile now. I am in so much pain, it's mind numbing. Nothing is taking care of the pain.

He told me there wasn't anything else he can do. I am on Cymbalta for depression, and the Fibro. I'm also on Plaquenil for the Sjogren's, and a bunch of other meds for other things. He wants to put me on Neurontin, but I can't take it. It sent me to the hospital for a few days because I literally couldn't remember anything, or who I was. Scary. Aside from that, he said there is nothing else to be done.

I am up for about 3 hours, then I have to rest for about 4 hours before I make dinner. If I can make dinner that night. Forget about cleaning. The state of my house is a whole different rant. (I have 3 other adults living here. Nuff said!) My boyfriend is trying to be patient with me, but I can tell he is at a loss. Last night he said he was frustrated that he can't do anything for me. I was in tears last night because of MY frustration and he was afraid that I'm suicidal, because I said I felt like I was up against the wall and there wasn't anything I could do, I felt hopeless, and wasn't sure how much more pain I could take. My depression is a very serious matter that I have to deal with on a day to day basis. But depression wise, I am actually ok, just frustrated.

I asked if I could have my recent blood work results, and he gave them to me. He didn't mention that my Complement Component C3C is at 224, out of a scale from 90-180. What does this mean? I don't know. The doctor mentioned again that he felt I had Lupus, but it's not showing up in the blood work. *shrug* He also said "To look at you, you look like you're healthy." I was flabbergasted! He can read my chart and see that I'm in a world of pain, and I have so many things wrong with me, that the alphabet doesn't even cover it.

Thank you for letting me rant/cry/vent. I'm tired of being in bed for most of the day, lately, and even more tired of being in constant pain. I know I'm not alone. Thankfully I have you guys, who actually understand. But I still feel like I'm out in the middle of the ocean, on a fast shrinking ice berg.

Thank you,

Stacie

2

Dear Staci,

I get the Neurontin problem, I cannot take it either, but what about Lyrica? If you are having nerve pain those are the 2 most popular meds to my knowledge for that. I have Sciatica and it usually does the trick for that and Fibro. Some also take Tramadol and Toradol for nerve pain also, the latter is used in short bursts from what I understand. Keep in mind, I'm not a medical professional!

I cannot tolerate the SE of Prednisone, but know that coming off it will make you more than miserable. Fibromyalgia is a stress response, so when one thing gets worse, it is going to make the Fibro worse, everytime!

Being ill and being in pain is very depressing, upsetting, and having the other adults take care of the house would be a good place to start helping you! The obvious seems to escape them!

I'm just no help on the lab results, it is not my strong point, so I will let the more knowledgeable respond to that, but I know that not everything you could have will show up!

Sending my best,

SK

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Hi Sk, I can't take Lyrica either. I gained 30 lbs in 2 weeks on it. It was like an explosion! There was a new med he could put me on, but I would have to go off the Cymbalta, which with my depression is not an option. I see my pain doc monthly, and he gives me Toradol shots, and they do help, if only temporary.

I am back on Prednisone, for now.. I hate being on it, but what do I do? Be bed ridden in so much pain that I don't want to breathe?

Thank you for your response.

*Gentle Hugs*

Stacie

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Thank you Mirabelle. I would take a bath if I had a comfortable bath. Mine is more like a torture chamber. Lol

We (me and 2 docs) have decided to give Neurontin a try, at a very low child dose. If I have a bad reaction again, it just cements that I can’t take it. Who knows, maybe it will work this time. It had been 15+ years since I took it last.

My boyfriend is trying to be so supportive, but he would like to have a homemade dinner from time to time. Right now I feel useless. My poor dogs are scratching themselves raw, and I don’t have the energy to vacuum daily to see it it would help them. I really think it’s in the carpet, as does the vet. I feel like a very bad fur mommy. =(

Through it all, I still try to maintain my sense of humor. If that goes, we are ALL in trouble around here! lol

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hi,I cannot take either neurontin or Lyrica...They make me psychotic and like you said, unable to recall anything. I put them on m list of allergies. Have you considered a pain management doctor? My PM doc saved my life. I would have killed myself had Ihad to just deal with the pain. There is NO dealing with it. EVen on the heaviest meds in existence my pain ranges frm 6-8. Without the meds I'm a screaming 10. When I come intothe hospital I always have to deal with doctors who think it is their assignment in life to give me less pain meds than I know I need. My first night here I only had half a dose of my med and I was up all night crying from the pain. Finally they called my GP who knows that I'm ok and safe on the full dose. So I finally got them about 2:00 AM. I hate that I have to take them but I could no longer deny my need. I was up all night every night crying....

I hope you find some answers. Maybe epidural injections? They work wonders for some people.

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My heart goes out to you. Fortunately I don’t have fibro and I don’t get mind bending pain like yours. I can’t tolerate Neurontin either but Lyrica works for my neuropathy. I am also on low dose Prednisone due to a current flare. I have begun to add alternative therapies to the mix to see if it helps the inflammation because there are days my muscles contract and I can’t walk. I add hemp seed to my meals. I also read that b6 helps as well but I don’t know how much too take. A friend suggested a naturopath and I am considering that as well.

I am sorry your boyfriend is not as supportive as you need him to be. I know it’s hard but you’ve got to communicate info on your illness to him so he doesn’t make you feel guilty about not taking care of him. He can help with the housework and the dogs while you are out of commission. If not, what the heck… You can always get a wrecking ball for the house! I am a single parent with a teenage son so you can imagine what it gets like in my house when I am out of commission!

Above all else take care of you the best you can. Anxiety and depression will make your symptoms worse. Sending hugs of sympathy and support your way…



Qadosh2him said:

hi,I cannot take either neurontin or Lyrica…They make me psychotic and like you said, unable to recall anything. I put them on m list of allergies. Have you considered a pain management doctor? My PM doc saved my life. I would have killed myself had Ihad to just deal with the pain. There is NO dealing with it. EVen on the heaviest meds in existence my pain ranges frm 6-8. Without the meds I’m a screaming 10. When I come intothe hospital I always have to deal with doctors who think it is their assignment in life to give me less pain meds than I know I need. My first night here I only had half a dose of my med and I was up all night crying from the pain. Finally they called my GP who knows that I’m ok and safe on the full dose. So I finally got them about 2:00 AM. I hate that I have to take them but I could no longer deny my need. I was up all night every night crying…

I hope you find some answers. Maybe epidural injections? They work wonders for some people.

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I am so sorry you aren't getting the support from you doctor or you household. I am on Lyrica for my overactive nerves, Paxel for depression (the serotonin levels drop in my brain and causes me to have chronic insomnia which will bring on serious depression so I have to take an antidepressant that keeps the levels up), Trazadone to sleep, and Norco for the chronic pain I have daily. It is a good day when the pain meds are working and that is when I am not in a flare. When I flare, they take the edge off but as the day goes on, nothing works. My flares last from 3 to 4 days. Have you ever taken Norco? That is what works best for me. I would look for a reputable Rheumatologist and let them take a fresh look at your condition. I am going to be praying for you. God Loves You:)

Better Days Ahead, MiMi

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I reached a point where I founda new rheumy. It sounds like you might be there. He is not addressing your pain that goes with all of our ai’s. If the plaquenil isn’t making a difference, look at getting off it. I will not continue with meds that are not helping. Too many I have to take.
Have your doctor get you into pain management. Mine is a life saver. He coordinate meds, pain and treatment to make sure not misdosing. I am on nucynta, a newer drug that helps with fibro and sjogrens pain. Mobic for inflammation.

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Please get a new Dr.....this frustration is just too much and you need a change.

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I think I didn't say this clearly enough. My boyfriend is very supportive of me! He is wonderful in so many ways (but he has his flaws, some that drive me crazy!). When I said he would like a home cooked meal, I meant that he would love one, if I could make it. If not, then I'll make him something easy, like a BLT sandwich, or frozen burritos, or whatnot. He even told my 25yr old daughter off last night. She was complaining about me not doing a load of laundry, and he said, "your mother needs your help right now! She's in a lot of pain!" That shut my daughter up, for a minute or two. I can't shut her up for longer then 5 minutes. LOL

I actually love to cook, so it disappoints me when I can't make dinner. I will be starting the Modified Elimination Diet soon, which will be a whole different set of problems. I'm going to make my family eat what I make. We all need to lose weight badly. I'm pretty sure the house will implode if they all agreed on a good meal from the diet. LOL I just need to find the strength to make the meals for the diet. I will be going through a serious sugar/soda/chocolate with drawl soon. I know soda (pop, soda pop!) is bad for us, it's just hard to stop something that I've drank/ate for so long. Why don't I have the will I had in my 20's? It's really frustrating!

Here is a link to the Modified Elimination Diet. I think it's very similar to an anti-inflammatory diet. http://www.healthdesigns.com/Elimination_Diet.html

I tried Neurontin about 15+ years ago. So far I've taken 2 doses of it, and so far so good. =) I'm being optimistic that it will work. Or at least trying to. 8P~~~

Today I woke up in a good mood. Hurting badly, but still in a good mood. I hope it lasts awhile today. I think the Cymbalta is working for my depression, or a combination of my meds.

I have only seen this new Rheumy twice. He is at UCSD, which is a highly recommended hospital. There aren't any more Rheumy docs left for me to go to here in the San Diego area. I am on Medicaid, and the we only have 3 choices for Rheumys. The other two I saw where way worse then my doc. He genuinely wants to help, but can't. I'm on too many medications, and they are leery of putting me on any more.

Once I find, or retype my med list, I'll post it, so you all can give me advice.

Thank you for your continued support! It means a lot to me.

Stacie

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Yes, I have gained a LOT of weight with Lyrica, and it is not coming off, but I need it, so I will have to suck it up.

Fascina said:

Hi Sk, I can't take Lyrica either. I gained 30 lbs in 2 weeks on it. It was like an explosion! There was a new med he could put me on, but I would have to go off the Cymbalta, which with my depression is not an option. I see my pain doc monthly, and he gives me Toradol shots, and they do help, if only temporary.

I am back on Prednisone, for now.. I hate being on it, but what do I do? Be bed ridden in so much pain that I don't want to breathe?

Thank you for your response.

*Gentle Hugs*

Stacie

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Do Not let your PM follow us! I've been on Medicaid now for 22 years. It is seriously hit or miss with doctors over here, and we are limited on who we can see. The reason why a lot of doctors don't take Medicaid is because the government just doesn't pay. If a docs office visit is $100 they only get about $25. That is no way for a doctor to pay his/her bills. Yes, I agree that many doctors over charge, but they have to to keep practicing.

Under the new Obamacare my mother (who is elderly) is having a harder time getting medical care. She is now paying more per office visit and medication, then before Obamacare. She is on a very limited budget. It's scary for her. I will be in the same boat when I get Medicare instead of Medicaid.

Let people know that our "system" is broken, and your PM is truly a dufus!

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Not all health care here is dictated. I don't need referrals and can see most any doctor I wish. The problem happens for either certain types of healthcare or for those areas who are isolated and offer few choices. That said, our healthcare system is not exactly perfect, as you pointed out, and I cannot fathom why anyone would wish to emulate us!!

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OMG I'm so sorry! What happens when the disabled can't work?! I am disabled and cannot work. Even the thought of thinking about having to work sends me in tears! I am 46, not 35 or under, but the same thought applies! He is crazy!!!

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OH, my word. That is absolutely nuts.

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Stacie, a diet change will help you so much! Acupuncture and massage would too but hard to do with a limited budget. At least eliminate sugar and gluten. It is surprising how much sugar and gluten are in all processed foods - actually it is criminal because they can do so much damage. You may need to give up or at least cut back on dairy too. Best way to shop is just around the edges of the supermarket and ignore the center aisles where all the processed and packaged foods are.

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Kaz, You are so my new favorite! LOL…Well said and well detailed!!!!

Kaz said:

I do tell people all the time as I speak with many people through a group, which is mainly people from the US, with my other rare condition and it breaks my heart with some of the dramas people have, even in getting something simple like a CT scan... So I try and tell people I know here how the system works, not!

There have been many protests marches here. I actually attended one last week-end. Over 10,000 people in my city, and thousands more around our country in capital cities. The other political parties have vowed to block it in the senate but the PM isn't backing down. Lots more marches are planned over the next few months and they get bigger every time as people begin to learn the truth about where this is heading.

He also is trying to deregulate universities and bring in a US style system of colleges etc. So we will see a two tiered health system and a two tiered higher education system. Students around the country have been protesting in the thousands. Mind you, at a time when he annouced this, his daughter got handed a $60,000 scholarship for college on a silver platter that was not advertised, nor were any other students considered. In fact no-one was even aware of the scholarship. It was given by the head of the college who also happens to be a long time friend of the PM and family, and someone who has paid ALOT of money into their political fund. Of course this man has A LOT to gain if the deregulation of universities occurs. The PM is trying to force their hands by also starving them of funding.

He also is starving our states of money for education and health so that they will back these changes, or force them to increase the GST (goods and services tax).

He thinks he's playing a live game of Game of Thrones. He even reintroduced the terms Dames and Knights. The man is a complete raving lunatic. I am sure his goal is for those who are not wealthy to become working poor and his servants, and all the sick people die. He has invested BILLIONS of dollars into fighter jets from the US - why?? Are we intending of going into war with someone? He is totally barking mad!

He also is telling our youth that no longer can they get help from the gov't when unemployed. They will have to wait 6 months for payments when they leave uni. Don't know how these kids will survive as they try to find work. Then after 6 months can get a small amount from the gov't but they have to work for the dole for 25 hours per week doing whatever they tell them to. They also have to take jobs, if offered, any job and also move interstate etc., if they have to in order to work. So the scheme will be 6 months to qualify for payments, 6 months on payment and working for the dole, and then 6 months again without payments.

He also wants our under 35 disability pensioners to work, so they are going to be assessed and if they are deemed to be able to work 8+ hours per week will be made to, either by working for the dole or other activities - how degrading and humiliating for them. They will also have sanctions applied for compliance... But nowhere are we seeing jobs created for people. Very scary times ahead if these changes get through. He already started implementing some of them which I am not sure whether that is legal as they are supposed to pass senate first.


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SK is right Staci. Lyrica (pregabalin) has less toxicity. I couldnt tolerate gabapentin(nuerotontin) but i can pregabalin. If you tritate this up the weight gain is nominal.Start at 50 mg. I

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83-neuropathicpainmedications.pdf (601 KB)
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I’m on 100mg 3 times a day of Neurontin. So far no notable difference. Lyrica made me gain 30lbs in 2 weeks. I am going to start slowly easing into The Modified Elimination diet, starting this week. Now I just need the will of Superman to not crumble on the diet and lust after chocolate every minute. Lol

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Hey Fascina,

I've yet to meet a woman who didn't crave chocolate! Love the stuff, the milk chocolate, of course! My Doc tells me it's usually an indication of needing magnesium! He told me 1800 mg is what I should be taking daily! See what your Doc says!

http://www.3fatchicks.com/5-supplements-that-suppress-chocolate-cravings/