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So Many Pains How Do I make it STOP Please Help!!!!

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Rheumatoid Arthritis
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Posted 3/3/2009 6:47 PM (GMT 0)
I am 36 yr old hispanic female diagnosed with Psoratic Arthritisas of January 2008, Fibromialgia and Barrets Esophagus In december had gabbbladder removed because it wasn't functioning at all I started walking and jogging on the treadmill for about a month now thinking it might help me feel more energized. I am so exhausted I literally need help to get out of bed and I am in so much pain and Literally have no strength in my body. I also noticed that my feet and fingers are always falling esleep I have not strength in my hands can't open anything. I want to sleep all the time it hurts to walk, move, breath I am having excruciating pain in my lover abdomen I get very bad headaches, I also have trouble sleeping and was put on Amytriptiline for Fibro to help me sleep it works sometimes. I also have become very forgetfull and lots of times I loose focus.  I am taking 5mg of Prednisone, 5 Methrotrexate pills, weekly 600 mg of Remicade every 6 weeks I take a multivitamin and Calcium pill. My Husband doesn't believe that I'm this tired or this sick he thinks I'm just being Lazy He doesn't understand how painful it is where I cry just to move a step. Can anyone relate or help. Thanks PR Glo
Posted 3/3/2009 11:41 PM (GMT 0)
I totally understand where you are coming from. My major complaint during what turned out later to be my first lupus flare, was FATIGUE! It felt like I was walking through neck deep snow. So difficult and tiring to move. During ankylosing spondylitis flares, my major problem is the pain from sacroiliitis. I literally need a walker to ambulate.

When is your next rheumm appointment? It sounds like you are having a flare inspite of the remicade.
Posted 3/4/2009 1:45 AM (GMT 0)

I feel for you.  I do remember the methotrexate.  I stopped taking it because of the horrible side effects.  I stopped going to my rheumatologist and only go to pain management now to try to deal with the pain.  We all must take our own path, but those arthritis treatments were not for me.  I had severe side effects to all of it.  The only thing I haven't done is the injectables and I just refuse.  So, I am sorry to say, after 20+ years of dealing with this horrible disease (and a few others I just won't go into right now), my best advice is to take a pain pill, then a long hot bath, and relax. Stress will make anyone flare up.  Meditation is also a great help.  I must say though I've learned to really enjoy the good moments.  Arthritis and fibro have a way of changing from one moment to the next, so while I do take life one day at a time (cause god knows some days are better than others) I also take it one moment at a time; because one moment you may feel great and the next you're as close to the fetal position as you can get and trying not to cry.  And the fatigue is AWFUL.  I have spent entire weekends asleep.  I have found that if I get up for work at 4 or 4:30 I have a few hours to let my meds start working and wake up and get moving before I have to go to work.  And I have also been known to spend a morning or 2 sitting straight up in my chair sound asleep.  Thank goodness no one tells the boss.  I usually wake up when my head hits my keyboard :)  So good luck and god bless. And know that you are in great company ;) I have found those of us with these problems tend to be really strong folk. I hope you feel better soon and find that path that gives you the most relief.

renie

Posted 3/4/2009 7:35 AM (GMT 0)
pr glo: You are not alone...You are NOT being lazy. and Alas, there are many of us with issues like you. Many of us try to look and be "normal" but on the inside, depending on the disease, our body is ravishing the joints, the GI system, the integument...Some people have an Idea of what sick really is...just a thought...maybe your husband could accompany you to your next infusion...

FYI fatigue is usually a common component in many of these ailments. At times, this one issue alone, can be more distressing than the pain itself. And the pain itself can tire you...physically and mentally. Lastly, your meds can affect the mental (prednisone) and physical (Remicade...I was down for 2-3 days after with extreme muscle fatigue)

It can help to talk about your frustrations. I and others will be here to listen. Take care smilewinkgrin
Posted 3/4/2009 2:20 PM (GMT 0)

It's not in your mind, your not lazey, your obviously suffering from a flare up at the moment.

You need to revaluate your medication, until you find some proper pain relief. Perhaps a new Anti TNF? Humeria or Enbrel may help? You may have to push your current GP or rheumy for better care/pain relief. Write it all down & explain it to them on your next appointment.

If your husband truly loves you, he we try more to understand what your going through. It may take him a while to come to terms with it.

I too suffer from a progressive form of Arthritis (Ankylosing Spondylitis). I have a great wife & family. She tries to understand, best that she can what I'm going through.

I too, had a very bad flare up within the onset of my AS (aged 21), but I wasn't diagnosed until 5 years later (not uncommon). I was feeling that bad at the time I couldn't get off the settee for around a year, due to exhaustion & pain. Things now are allot better for me & I'm beginning to cope with my AS better these days.

Take care, best wishes.

George.
Posted 3/5/2009 8:17 AM (GMT 0)
Hi there. I also have psoriatic arthritis and can completely relate. My husband feels the same way about me. He just does not GET it. The fatigue is unexplainable.

I have a few things for you to consider. I've had many of your issues (weakness fatigue, fog, etc) from all those same meds: a steriod, methotrexate, and remicade. I'm off all of them. Steriods messed with my head BIG TIME. I was in a constant fog, cranky, and unable to think straight. It wasn't until I was OFF them that I realized what bad shape I was in. Never again.

On methotrexate I felt tired all the time. It messed with my lungs. I took a breathing test and they claimed that my issues were not caused by the med, yet I never had the problem before taking the drug nor have I had it since stopping the med. I was short of breath, chest pains, couldn't be w/in 20 feet of someone smoking or a campfire without going in to attacks. It is also known that taking it can wipe you out. Many people suggest that you take it on a day (or the night before) you can take it easy. You also need to take extra folic acid and b vitamins while on it and drink TONS of water daily - apparently this makes a huge difference while one it.

Remicade CAN (though it is rare) cause muscular issues. I had a problem with my hands and arms going to sleep while on it. The docs didn't think it was that - but the severity of the problem has subsided since stopping the med. THe med helped my PA immensely at first, but I was more fatigued on it than I realized. I hallucinated a lot while on it as well (mainly before bed when I was tired). Vitamins, water, and taking a good BComplex is also a necessity to help with your energy.

Anyway, just a thought. I took all 3 of those sepeartely - you're taking them all together. If there's a chance you are reacting the same way AND taking them all together, then I think you and your doctor need to consider trying other medications.

Good luck.***

Posted 3/5/2009 9:23 PM (GMT 0)
Thanks Guys for your words of encouragement It makes me feel good that I am not alone and that all of this is not in my head.  just to update you this week it has been very cold in CT and my hands and knee's are killing me soooo bad I don't know what to do I have my appointment with my rheumatologist tomorrow lets see what she's going to say this time I just had an infussion I honestly feel like I should stop taking all my meds because I don't see where they are working I just feel horrible all the time and exhausted I'm even getting lots of pain in my abdomen and my toes and fingers fall esleep. I don't know what to do thanks for listening. PR Glo 
Posted 3/6/2009 5:58 PM (GMT 0)
Let us know what happens today at the doctors. Good luck.

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