[MichelleAnn]

PAIN~~ seems to be one of my biggest issues with Lupus. I read over and over that it is others big problem with Lupus too. Pain is not stressed with Lupus like we experience it. My doctor does not get the extent of the pain that takes over your life somedays, many days. PAIN~ and the Fatigue that goes with it. We all take something different for pain, it never works the best for me maybe it touches the edge of the pain is all. But sometimes I am really medicated. PAIN~ I believe is what brings us down the most with the fatigue causing depression. I believe more emphasesis should be on pain...I know I hurt so badly somenights I cry. I pray, I beg for relief. Anything I can take to take the edge off. Then I get through another day for thee pain especially during flarups is back....to deal with all over again. Pain and Fatigue keeps me from doing things I want to do and must do, but cant!!....Its a demon that wont go away. PAIN!! grrrr .....Thanks for letting me vent....I get so angry with the pain and fatigue.

 

[pennylp]

Hi MichelleAnn,

I am so sorry you are in so much pain...It isn't a fun thing... I know what you are talking about... Years ago I probably was where you are now... I have a doctor who is great with helping with pain... He tried me on quite a few pain meds before we finally got one that helped and then we had to get the right dosage which we eventually did...
You need to tell your doctor you are in severe pain and if the meds he gives you doesn't work , then to try something new... If your doctor will not help you can you try going to someone else... Lupus is so much easier to deal with if you are not in extreme pain...
I hope you get the help you need... Take care of yourself..

Love penny

 

[Gwennie]

Pain n fatigue!!

Hi MichelleAnn,
Just thought id reply by saying SNAP i can totally identify with the whole pain n fatigue thing.It really can be quite overwhelming!! I am feeling pretty much like that today and have been all weekend.Had a bath earlier to make me feel better but only exhausted me and i wasnt even able to dry my hair!! The joys!! So u are not alone.
What are u taking for the pain relief i am on Tramadol max amount being 400mg a day,i also take solpadol too but still feel i could be doing with something else.
Hope you feel beter soon,take care,
Gwennie xx

 

[cad]

Hi MichelleAnn,
I too totally empathise i have been in constant pain for the past few weeks, some days wose than others and end up in tears sometimes aswell, i really understand.
I am really lucky though as my gp has taken this seriously, i am also on tramadol, i can take upto 800mg per day if i need but usually take 600mg, i was also taking amirtryptiline 300mg at night, aswell which helped.
I have pain everywhere head, eyes, jaw, neck, back all down my arms into my fingers, all down my legs into my feet.
I would definately recommend that you tell your doctor how you are and tell him that women on here have recommend drugs that give them some relief.
I really hope you get somewhere, i would definately keep pressing until you get something better.
The meds i'm on, when i first started them they did make me a bit drowsey but only at first when i was taking them regularly everyday i did not get this after about a week.
They are addictive however i do not experience withdrawl symtoms really if i don't take them. My gp says that if you are using them for severe pain then you are much less likely experience withdrawl symptoms.

Good Luck
Cassiex

 

[confused1]

Michelle, living with constant pain drains all joy and ease from life. You shouldn't have to deal with this all the time. Pain (with associated fatigue) is my main problem as well. Nerve pain in my face and head and the skin of my upper torso. Other places too, at times. Won't go into that.

I know all too well the shortcomings of medicine when it comes to treating pain. But I also know there are many, many alternatives. Until you've exhausted at least a few, please don't give up. I don't know where your pain is. I don't know if you've seen a pain doctor. Please, find the energy somewhere to look for other options. Different drugs, different methods of taking the drugs, "alternative" therapies......

I was not helped at all by intermittent doses of narcotic strength meds taken "as needed." The only form of relief I have found is to be on daily, consistent doses of morphine, and the added umph of anti-seizure meds for the nerve aspect of my pain.

This doesn't recommend that you need the same. But I will tell you this, once you're hurting so bad you cry, nothing will help much. If you have chronic pain, you must stay ahead. If you put off a dose because you aren't hurting much, later when you ARE hurting, the dose will be much less effective than if you had a steady level of that chemical in your body.

I know I'm droning on, but your post just kicked me in the heart. I have lived with chronic, nearly constant pain for 4+ years now. It's horrible and I don't want anyone else every to experience the same. I will tell you, you have to create some way to find relief in your head and heart, even when your body is in pain. I can't tell you how to do that. For me, it's been a mixture of meditative practice, breathing and finding an outlet for all that's pent inside me. I, who was nearly banned from the crayons in kindergarten, have started letting a tiny bit of art spill out of me. There is huge comfort in fondling soft pieces of fabric in beautiful colors and then attaching them to each other. I don't know what your outlet is or where your inner safety will be found. I will send prayers and good wishes and many healing thoughts to you. And if you want to "talk", I'm as close as a PM or email.

You aren't alone. Misery loves company -- -- I will be happy to help you through any way I can.

Soft hugs,
Sunny

 

[Katharine]

Hi there,

You're quite right! I think in the majority of cases pain is not considered nearly enough and, for me too, it is the one thing that does get me down.

I know that some people here have found a lot iof relief from seeing a pain management doc and that "pain clinics" exist where they specifically deal with pain. Maybe that's an idea if you haven't already looked into it.

Don't worry about venting. We all need to so it from time to time.
hugs to you :hug:
Katharine

 

[lin]

((((((((((((HUGS)))))))))))))) i hope you can get this sorted out, its the pits the pain, and the fatuige grrrrrrrrrrrrrrrrrrrr!! and as for venting you vent away hun.

hope you feel better soon Lin xxx

 

[MichelleAnn]

Thanks for the posts. I do see a pain clinic. I am on medicines. I get so overwhelmed at times when the pain takes over my body with the fatigue. Like lastnite, I was out with a few friends, they commented how I instantly changed, my facial and body expressions. I all the sudden could not take the pain, pretending I am ok, the fatigue overwhelmed me. A friend drove me home, I was miserable, crying, took rest and 2 hours for the meds to kick in enough that I could function or even watch television. Its upsetting....I never know. I cant plan anything. I might be fine and have a great time or it can be a disaster. My kids see me like this and are helpless....they try to help. Its something I would not wish on anyone and only you lupie friends can understand. I am tired of doing nothing all the time. Especially right now as I am fighting this flareup....I know most of you have been there....On good days, my attitude is positive and I feel good but on bad days especially several bad days in a row, it gets the best of you. Overwhelms. Thank you!

 

[lazylegs]

Hi MichelleAnn,

I wish I had some magic potion for you, but of course I don't. Most of us have been where you are now and hope never to have it that bad again. When I am I go to bed and hibernate. No chore takes precedence over health. It is always harder when you have little ones. Is there anyone that can help with them for a day or two?

Take care,
Lazylegs

 

[acard]

MichelleAnn,
(((((HUGS))))) I am so sorry for what you are going through. You are not alone~my rheumy is not real big on rx'ing pain meds. Pain~affects our lives in every way and they don't understand it, because they don't live our lives.
I wish you could get some help with your kids, so that you could just have a couple days to "let down". You need to tell your dr. exactly what you are feeling. Then do you have family members that could help you out?
I hope you get some relief very soon!!!!!!

Hugs,
Becca