I can't help it, I'm pissed. I'm sick of hurting all the time. I'm sick and tired of not being able to do anything for the pain. Pain medication is not an option for me. I have a lot of issues with my stomach and have a very low tolerance for most medications, even antibiotics. I also refuse to become addicted to anything to just get by. I'm allergic to Motrin so I can not take any of that type of meds either.
Just irritated that it has to be so hard to just get through a day. For years I dealt with having IBS. My life changed so much because of how sick I was. I never imagined I would get worse and develop even more problems like I have now. I have been smoking medical marijuana but I only do it at night after my youngest is in bed and I can barely hit it once. It's stupid how strong that stuff is and I'm not doing it to get high. For the most part I think it just relaxes me enough that I can over look how I'm feeling and rest. I can not do it during the day. My son is only 2 and I don't want to be like that around my other kids.
We are having family over today for my youngest sons b-day and I'm irritated that I feel like I do. I'm no help to anyone when I'm like this. All I did was cry yesterday.
It's weird every time I get to this point where all I can do is cry from pain and frustration I feel like a little girl who just wants her mommy to take away the pain or come over to make me feel better. I cry more over losing my dad and sister when I'm really down about being sick then I do any other time. I have no idea why I do that to myself. It's not like if either of them were still here I would be any better.
So sorry to hear your feeling so low, Lupus in itself can take so many of us to this stage sometimes as i've been there myself with my manic depression and pulling out the situation is one hard roll to play.
Your stomach pains are most likely coming from the Lupus as it causes me some pain at times and by reading what you've said i'd say your in a flare besides affecting your body it's really doing you in mentally and getting upset over lost ones does'nt hurt, even though they may not have been able to help the loving thoughts for them gives you great recognition of them both.
Where your taking marijuana at night when your alone is entirely your personal business and although your unable to take hardly any...just becareful it's not upsetting your system more and also messing with you more emotionally as the drug can do this.
Even though it's your sons birthday...do the best you can and what you in general can cope with and if you need to rest and family understand and will help you...go and take a break.
I'll be thinking about you and all my love and prayers....but do chill out tomorrow if you need it.
You probably have looked into this but a pain management doctor specializes in how to handle pain. He or she will know what is addictive and what is not. They will know the side effects of medications. There are other options that are not medication. For example, there is a device that can be implanted. There are things you can wear. Please try to find a specialist to help with your pain. We all know how depressing it can be. I am on medications for mine and, trust me, I still have issues with it and still cry at how unfair it all feels sometimes. Good luck...and please try to find some beauty or fun in this special day in your household....Lynn
Thank you so much for the wonderful support. I will look into seeing a pain doctor. I did not want to but I think it's come to that point. I really appreciate knowing there are people there to support me and understand.
We're all here for you anytime but coping with pain can become a complete nightmare at times especially when it feels more severe plus we have quite a few members who see pain doctor's.
Please take "Lynn's" advice and seek furthur help and keep we updated please and do takecare.
Please, please take Lynn & Tez_20's advice. I have been seeing a pain management doctor for over 10 years...first for a back injury and now from the lupus. One of the few things that is not known about "pain management" is that it is just that "management". I started on meds, but also hydrotherapy, physical therapy, meditation and other things. Few people that actually are in pain become addicted to pain meds. As we are not seeking a "high" but relief we tend to stop when we find that relief. Our bodies don't react the same way, and it's very rarely that I have a feeling of being "high" from my meds, not to mention there are some non-narcotic meds, although they don't work very well for me.
I have one of the stimulators that Lynn spoke about. It helps, especially at night when my legs are having spasms, although it isn't for everyone and you should carefully decide with your doctor if it is an option for you.
As to the stomach issues, there are medications that are delivered dermally (through the skin) and don't go through the digestive tract at all. A pain management specialist takes all issues into account...how the med will react with others, whether something like Cymbalta or Lyrica can help, and how the meds will affect your other organs (After 10 years I have only "minimal" irritation to my stomach).
You sound as if you are having a terrible time and I am sorry for that, however when it comes down to setting aside your pride and asking for help, or truly being a part of your son't birthday without being "pissed", I know what I would do. There are so very many misconceptions about pain management that I believe you owe it to yourself and your children to at least speak to a Dr. Most are anesthesiologists and therefore have extended training. Other health issues can arise from chronic pain including high BP, stroke, ulcers, loss of sleep and others that could very well be taking away from your quality of life.
As a mother as well, I understand the dilemma you are in, but in my opinion you owe it to yourself and your children. I think you may be surprised by the options that are available for you.
Best of luck and hope that you have a wonderful day today.
Yes, they can suggest other pain control treatments such as TENS or ultrasound or acupuncture or massage or shots in really painful spots or the pills that are made from marijuana with the THC take out so it kills pain. Naloxone. I want to find a pain mgmt Dr. who has an ultrasound machine for pain, not for imaging, because if it works, I want to buy one hand held for less than $100 at www.http://www.ezultrasound.com/
prtyblueyz said:
Thank you so much for the wonderful support. I will look into seeing a pain doctor. I did not want to but I think it's come to that point. I really appreciate knowing there are people there to support me and understand.
If you buy one off ebay i hope it helps, there's just one thing i recommend which you proberly know already make sure the sellers feed back is sound...so you get what your paying for. :) xxx
My vote would be on the side of caution, Blueyz. I've talked with patients who have tried TENS for TN pain and had major breakthrough pain reactions to it. As far as ultrasound is concerned, there doesn't seem to be anything in the way of controlled randomized trials in medical literature, at least not for neurologic conditions or Lupus. You will need to afford the cost on your own because medical insurance is unlikely to cover devices that aren't proven effective. So it would be well to investigate this with the oversight and counsel of a pain management specialist. If anybody is going to be knowledgeable enough to guide you through the minefields of hype and outright fraud, it's likely to be somebody in that field.
Sheila, You might try Craigslist (or even better freecycle.org) instead. That way, you can find someone local so you can try it out before you buy it. Good luck!
I feel for you. I’m a mommy to little ones too, and when I’m scared or hurting I just want my mommy too. All that caregiving we do … Makes me want someone to do the same for me … And someone to take a bit of responsibility away from me for a while so I can just rest & deal with my own pain for a bit. If family can come for a birthday party, could they also come to babysit for an evening or overnight so you can get r&r?
Red, despite studies, I know sooo many fibro & lupus patients who are helped by TENS. TN pain IS made worse by electric shocks, but fibro is a bit different.
Lawhern said:
My vote would be on the side of caution, Blueyz. I've talked with patients who have tried TENS for TN pain and had major breakthrough pain reactions to it. As far as ultrasound is concerned, there doesn't seem to be anything in the way of controlled randomized trials in medical literature, at least not for neurologic conditions or Lupus. You will need to afford the cost on your own because medical insurance is unlikely to cover devices that aren't proven effective. So it would be well to investigate this with the oversight and counsel of a pain management specialist. If anybody is going to be knowledgeable enough to guide you through the minefields of hype and outright fraud, it's likely to be somebody in that field.
My oldest daughter will be 17 in May. She helps me out so much, at times she is like his second mom. I am going to call a pain specialist today. The birthday party actually did me some good. With everyone here I didn't concentrate so much on how bad I was feeling. I woke up Sunday morning almost pain free. If only there was nothing wrong with my stomach I could of had a completely pain free day yesterday. Not the case today but I always say it could be worse.
All I can says is get help for pain immediatly. It can be very depressing and full of frustation. I think all of us can identify with the feelings. Keep strong
Prtyblueyz I also suffered from stomach pain daily, nausea at times and burning (acid). Someone mentioned taking a probiotic to me. I was skeptical, but decided to give it a try anyway thinking, “What have I got to lose? If it works great! If not, my search for relief will continue…”. I tried a couple of different brands and found one that actually worked. It’s called, “Probiotic 10” by Vitamin World. It contains 20 billion live probiotic cultures and has 10 probiotic strains for digestive balance. It made my stomach pain and burning go away. I also started drinking ginger lemon tea with every meal. The probiotic and ginger lemon tea ended my stomach problems. When I miss my probiotic (take 1 in the AM and 1 in the evening) I start to feel it by the second day. The tea also helps just as much after meals. These two changes eased my stomach issues. I hope you try it. I’ll post a pic of the products I use.
prtyblueyz said:
My oldest daughter will be 17 in May. She helps me out so much, at times she is like his second mom. I am going to call a pain specialist today. The birthday party actually did me some good. With everyone here I didn't concentrate so much on how bad I was feeling. I woke up Sunday morning almost pain free. If only there was nothing wrong with my stomach I could of had a completely pain free day yesterday. Not the case today but I always say it could be worse.
Please go see a Pain management doc before you spend money on something that many not work for you. An US machine would only be of use if you could reach all of the places you want muscle relief.
Same with a TENS which I found even less effective as it must pass through skin, muscle, the spinal column to reach the nerves to interrupt the nerve impulses. The stimulator I have has leads which run under the skin directly to the spine to interrupt the signals, although I would never be able to do just that.
Please google "chronic pain". You may be shocked to see the results of studies directly linking chronic pain and depression. One can make the other worse which causes a vicious cycle.
Chronic pain is an underlying symptom of our disease and should be treated as such. No one feels the stigma of asking for advice on mouth sores or losing our hair.
I know that I would probably not be here had I not sought out relief as it got to the point several years ago that I no longer wanted to get out of bed. That is not life that is merely existence. I would love to see you have the same relief. And although I still have some pain, I no longer go days without getting dressed or leaving my home.
I hope that you are able to find that same relief and can again start to enjoy friends that visit. :)
