[katiebug]

I am so frustrated because I hurt all day and all night but my leg and feet pain are truly unbearable at night and will go all night. I have gotten so tired of eating 10 or more ibuprofen and still hurting. I started taking my lortab every six hours just because I feel like I can get things done and not hurt.

I have actually been able to work part time again and I really don't care what anybody says or thinks about me for taking them all day. But I have kids who are active and I am so tired of my husband having to do everything because I am in to much pain to walk across the soccer field or play with them in the simpliest ways.

I know this sounds awful I don't want to dependant on any medication but if it allows me to live a functional life I want to take it. I have been feeling bad for so long with no real relief by my lupus meds the only relief I have found has been through my lortab. It doesn't make gitty or high it allows me and my body to get up and do the productive things that I need to do with my family and for myself. I really do not see myself as a junky. If i had something that worked without the narcotics I would most definetly try it. But until then I will keep trying to make the best of my frustrating condition.

What do you guys think or do you know of any other med that have helped you become more functional in your daily lives?

 

[Joandublin]

Hi Katie

Taking painkillers for such a debilitating condition as Lupus makes absolute sense to me There are many people in this world who take strong painkillers for painful conditions in order to allow them to have a quality of life. The fact that there are some people who abuse these type of medications has nothing to do with your situation and is a completely separate issue.

It saddens me that people feel they have to justify taking strong medications and often feel less of a person because of it. These medications were made to alleviate pain and thats the best reason to use them.

If your situation changes in the future and you have less (or no) pain, just make sure you reduce them under medical supervision to minimise any withdrawal symptoms.

Im glad you are more able to function with the painkillers. Life is for living. We dont get a second chance at it. Enjoy yourself!

Luv n stuff
Joan:rose:

 

[DnA]

Hi Katie

I take pain killers throughout the day every day just like you.

I wasn't doing this until about 6 months ago. I am lucky because I go to a Pain Management Clinic and my specialist gave me a right old telling off when I told him I didn't take my pain meds regularly. He promptly put me on more and told me that all I was doing in refusing to take them regularly was making myself suffer without reason! The only proviso is that I now have to have all my bloods done at least every 3 months.

I get funny looks when I'm out and taking handfuls of tablets - but you know what I don't care! If they mean I can function like a 'normal' human being and actually go out it's got to be worth it.

I totally agree with Joan - life is definitely for living.

Take care

Sammy

 

[cad]

Hi Katie,
I totally agree with Joan.

If taking pain relief everyday means that you can function better and have a better quality of life then i don't think there is anything wrog with that. Infact i think that you are doing absolutely the right thing for yourself and your family.
I am a mum too and without my pain killers i could not function due to the pain, pain is a mental battle aswell as a pysical one and i think thats too much to handle when you have chilren relying on you too.
As Joan said if and when the time comes when you no longer need them then you and your gp can look at weaning you off them, that what my gp has advised me to do also.

Good Luck

Take Care

Cassie

 

[cath]

Hi Katie,

Does your doctor know what the total dosages of painkillers you are taking is?

I think it is important that you do have some guidance in this area. I totally agree about having some quality of life, but presumably not at any cost. It is the ibuprofen I'm concerned about. Are the pills 200mg, 400mg or 600mg? The total daily maximum is 1200mg, so 6 pills if they are 200mg each, 3 x 400mg or 2 x 600mg. So 10 pills is an overdose. You won't get high from ibuprofen, or addicted, but it can damage your kidneys. Long term use of these pills at doses over the safe limit can eventually even cause kidney failure.

See:
http://www.igansupport.org/articles/headachesanalgesics.html

http://kidney.niddk.nih.gov/kudiseases/pubs/analgesicnephropathy/

Is there any way you could get a referal to a pain clinic? They would be able to advise you on the best pain medication regime for you and will be able to prescribe meds that the GP can't or is not so fammiliar with.

Wishing you better days,

X C X

 

[Nutty]

Hello Katie,

You are doing the right thing. It is so important that you take pain medication before the pain gets too bad. It took me a long time to learn that. But once the pain peaks, the pain medication is not as effective. Also, I have been told many times by doctors that as long as you are in pain, you will not become addicted.

I just went through a spell with my knees. I have the Fentanyl patch for pain that I change every 3 days, but I also have hydromorphone for break through pain. I went through a 4 week period where I had to take it every 3 hours just so I could stand the pain. I'm not mobile yet, but the pain has gotten better, so I stop. So as long as you are in pain, don't worry about it. Just make sure that your medication is sufficient to stop the pain. If not, see your doctor. Maybe a long lasting pain medication (hydromorphone contin for example) would help with a break through pain. My husband taught me that pain management comes first, then worry about the symptoms and the medications to deal with them. If you are in pain, you cannot do anything else as you have alluded to as well.

I hope you get the relief you need, quickly.

I wish you the best!

Nutty

 

[Maia]

The doctors here allow maximum dosages of Advil/ibuprofin of 2400mg a day. Dosing is usually 800mg every 8 hours, 400mg every 6 hours, etc. Advil is one of the harder NSAIDs on the kidney... so you do need to be careful of the total amount of this drug you take.

I can't add much more to what has already been said, I would recommend a pain management physician if you're unable to get adequate pain control through the measures you rheumy/GP are comfortable with prescribing. Using pain medication for it's intended purpose is the *right* thing to do!

 

[katiebug]

I thank you all for your honest opinion in this matter. I told my husband that sometimes I get so frustrated because of about 400 dollars a month for med that give me no real indication that they helping but more times than not I feel worse with side effects that they bring. I am to the point where I want to tell my rheumy and my gp that i am quiting all med except my pain meds simply they are the ones that i can teel help me live my life and be fuctional woman. I am very interested in a pain clinic and how the system works. Do any of you know any good pain clinics in Alabama?


Thanks for listening and caring enough to resond. It is very encouraging to know we can count on each other.

Katie

 

[Douglas]

The medical doctor and the pain-specialist explained the pain meds to me thus:
1) You should not be in pain. It takes more medication to push down pain than to keep pain down.
2) You have Lupus. It is therefore palliative care. So take your meds!
3) In answer to my fears of becoming dependant on pain pills, see 2) above. They told me, "You are not going to get better."
Decades ago before the diagnosis I was on as many as 48 buffered aspirin a day. Why I have any functioning organs left is a miracle. At the beginning of my treatment for SLE I was on Tylenol 3 but fear of liver damage caused a change to Tramadol. I simply would be unable to function without the pain killers. And that is fine with me; the alternative is so much worse.
I hope you get good medical advice and an accepting attitude to the correct pain killers.
Good luck.
Douglas+

 

[helloos]

Hi there. I agree with the others and you too ! You are right, you need the quality of life and you have the right to be concerned about the medication you are taking and what the long term effects are.

I would talke to your rhemo and your gp about your concerns and maybe together you can weigh the pros and cons of the medicine you are taking and different alternatives such as the pain clinic, meditations, etc. etc....

I think we have all felt this way one time or another. I am not taking any pain killers at the moment but have them on hand when needed. However, when I needed them, I took them. I also use other relaxing techniques for pain that do help. They take lots of practice though.

I hope that you can get some answers and have the options of trying new things.