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how much joint pain do you have????

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Posted 4/23/2008 2:02 AM (GMT 0)
My joint pain is slowly returning, it's mainly in my feet, ankles and hands however I must say the pain in my hips and lower back is minimal, which is great! Will I ever be pain free????

Where do you all hurt and what meds are you on? AND do they help?????

My muscles in my thighs are also hurting, like I've ran a 10k, it hurts mostly when I go to sit down or get up, does this happen to anyone else?

eyes sad mad eyes
Posted 4/23/2008 2:30 AM (GMT 0)
I have the muscle pain in my upper arm... from the elbow to the top of my shoulder... I can hardly raise my arms.... at the moment that has subsided a bit and I seem to be doing pretty good...

I have been having pain in my feet as well.. usually it is my knees and hands....
Posted 4/23/2008 2:38 AM (GMT 0)
(((((((( Stacie)))))))) Sorry you are still so miserable. My pain moved from wrist, arms neck, to hips, knees, feet, out the bottom of my soles and had a way less pain year . . . . Thought I was really getting away with something . . . but its now in my gut/colon . . . . Still . . . I don't have the fatigue I once did and I REALLY thought I'd never get rid of the difficult pain in the bottom of my feet. That last two years and I hobbled around with little relief. I hope you go into remission!! Blessings!
Posted 4/23/2008 2:07 PM (GMT 0)
weleetka,

Have you had your liver function and thyroid checked recently? If not, I would suggest you let your doctor know and to do those tests. I had the muscle weakness in my arms as well and it turned out I had hypothyroid.

As far as joint pain, mostly I feel it in my hips. Sometimes in my ankles, wrists, and elbows. When the pain was really bad, Celebrex worked the best. Now that we've found the right combination of meds, joint pain doesn't bother me too often.
Posted 4/23/2008 2:35 PM (GMT 0)
Thanks weleetka, Rosie & mygrljes,

I really thought once I started the MTX with my other meds that I wouldn't have pain anymore, guess I was wrong eyes
Posted 4/23/2008 4:49 PM (GMT 0)
Hey Stacie:

I hear ya on the painful joints. I have serious joint pain, I'm not sure if it's because I've got RA in addition to my lupus or not. My ankles, hips, low back, shoulders, elbows, wrists, and fingers all hurt like the dickens. I'm on both methotrexate and humira. I still haven't received the pain control that I thought these medications would bring. It's as if nothing is working for me. I can relate to how you feel, I'm sure you're frustrated that the joint pain won't ease up.

Something I do to help when my joint pain is really bad, I rub tiger balm on the joint that hurting. It's like bengay but a bit more potent. Of course, it doesn't smell to good, my husband hates when I wear it, but the heat from it provides some relief. You can purchase it in the pharmacy section of most drug stores.

I'm sorry sweetie that you're having pain. I know it's not much encouragement but hang in there, I'm pulling for ya. Please let us know how you're doing again soon.

Love,
Barb
Posted 4/23/2008 5:45 PM (GMT 0)
Joint pain is mostly in my lower back and spine, and my hips. I feel like an 80 year old woman, and it can get majorly intense. I have the pain in my thighs and legs, too, and the burning muscles\feel like Im dying... all over when I'm in a bad flare. My colon is SO sensitive, and I've noticed that when I eat anything thats irritating to it, the muscle pain in my legs is worse. The things that trigger the intense muscle pain are: honey, artificial sweeteners, probiotics, too much fiber, and spicy foods. Then again, it can start up at any time for any reason.... LOL

I hope you feel better soon, Stacie. I cant wait to meet you in June!!

Blessings,
Posted 4/23/2008 6:08 PM (GMT 0)
Thank you Barb & Victoria,

I hate feeling like such a whiny baby but I am tired of being in pain. I take so much medicine I just want something that works but when my doc tries to change things around it throws me into a terrible flare. Maybe it's time for an increase in the MTX.

I guess I should be thankful that the MTX is helping my hips and back which is what kept me from shopping, cleaning, sleeping comfortably, etc.

thank you Barb for your kind words and encouragement. I will look for the tiger balm, at least I could use it when I am at home.

Victoria, since we have so many similar symptoms, maybe I should start paying closer attention to what I am eating, of course I don't eat much spicy stuff but it's worth a shot. June will be here before we know it, I am so excited to meet you and everyone else!!!
Posted 4/23/2008 6:53 PM (GMT 0)
Even with Enbrel and celebrex I was never completely free of joint pain. Now without the celebrex I feel like I whine more about the pain but darn it all it hurts so bad sometimes and I am sick to death of hurting. So I completely understand. For me every joint hurts but the worst is my spine, hands, feet, and for now hips. If your joints swell and get warm and/or turn pink to red you may want to take pictures and tell your doctors because you could have RA to go with the lupus. It is not fun having both.
Posted 4/23/2008 6:59 PM (GMT 0)
Stacie, I have joint pain in a lot of the same places you do - my hands, feet, and knees mostly. When my pain is at its "normal" level of 3 or 4, the tramadol I take makes things bearable. When the pain gets above a 5, I take hydrocodone which helps a lot. I can't take NSAIDs because after a few days on them I get a rash and I was also told by my nephrologist not to take them because of past kidney problems. I know what you mean about being sick of the pain. Even though my pain is more under control lately than usual, I still have completely forgotten what it feels like to be pain free. I hope you find something that will give you more relief. Take care
Posted 4/23/2008 7:24 PM (GMT 0)
I'm sorry you're suffering with the pain so much. This is all still fairly new to me. I've had minor aches and pains all over for years, but the major joint pain started last fall when it started getting colder outside. It was all over but worst in my feet, ankles, and hands. I kept taking hot/warm baths because it's the only thing that helped, but of course it only helped while I was in the bath.

That pain finally eased up, and then it moved into my hips and elbows, and that is what still bothers me the most. The steroid shot I got last week has helped a LOT, though. I'm so afraid it's going to wear off and I'll be miserable again.

I have also had some bad pains in my thighs that feel like deep bone pain, but I'm not sure. I forgot to tell the doc about it.

Hope you get some relief soon.
Posted 4/24/2008 11:33 AM (GMT 0)
Hi Stacie:

Honey, you complain all you want about pain. Pain isn't natural to have and darn it, it hurts like heck. I understand your frustration at taking all the pills and such. I take 25 pills a day and that doesn't include my PRN meds. I just wanted your to know you're not whining and we all understand how it feels to hurt so bad, you think you're going to loose your ever loving mind.

I hope the tiger balm helps you and if you can't find it, let me know and I'll pick some up for you and bring it to Atlanta in June. Yes, I'm going to make the trip down to meet you all. I can't wait to meet each and everyone of you.

I just wanted to say it's ok to complain that's what we're here for. We love you Stacie and we want you to feel better. How much MTX are you on? I take 8 pills a week, but I'm thinking of asking for more. My joints really are hurting but I'm sure it's from the RA. Anyway, I hope you have a good day, and I wish you well.

Hugs,
Barb
Posted 4/26/2008 1:38 AM (GMT 0)
Hi.  It's great to read these threads and know that I am not alone.  I have most of my pain in my hips.  Nothing seems to help relieve the pain.  A couple of the guests here talk about MDX.  What is that?

Posted 4/26/2008 1:50 AM (GMT 0)
Thank you redrose, Hippi, doodlebee, Barb & Ohio, you ladies are wonderful. I know I can always count on ya'll. I get tired of complaining to my hubby and sometimes I just want to shut down and not tell him how I am really feeling. I have never felt like this before, I think I just have so much on me right now and my body is paying for it. I am so overwhelmed, I feel like I could explode...... not a good feeling.

I could not imagine having both lupus and RA confused I have often thought about that and have asked my rheumy, she says it's all lupus. I guess I shouldn't complain, things could all be worse and thankfully I have seen an improvement in my pain since being in MTX.

Right now I am taking Darvocet and it hardly does a thing, I have to take 2. I can't take Lortab or anything with codeine, it makes me itch like mad!!!!

Doodlebee, I get those same pains in my legs and the only way I could explain it was, it felt like it was "bone deep". I am sure it's related to lupus, but you should still mention it to your doctor.

Barb, I am going to go to the store tomorrow and will look for the balm and thank you for the offer. I am so excited to meet everyone too, it will be a blast. I am only on 7.5 mg of MTX and thinking about asking for more to see if it helps.

Thank you again for everything! Hugs and love to all

p.s. MTX is Methotrexate
Posted 4/26/2008 1:51 AM (GMT 0)
Mtx is a common abbreviation for methotrexate. An anticancer drug used in lower once weekly doses for autoimmune disorders. It is typical to take 8 2.5mg pills all at once one day a week.
Posted 5/1/2008 11:41 PM (GMT 0)
(((Stacie)))),

   I'm sorry I missed this tread!! I must have overlooked sweetie! I hope you have gotten some relief by now. I'm like you with the sensitivity to pain meds. I can't take anything except Ultracet. Everything else makes me break out in a rash or have severe nausea.

   For the most part the mix of meds I'm on keeps my joint and muscle pain in tact usually. I'm having a alot of pain right now all over with fatigue, fevers and light-headed. I saw a family doc yesterday and she said I have fluid in my left ear, my sinuses are irritated and I have a viral infection. I see my rheumy on monday to get her opinion... :-) .

   My heart goes out to you Stacie.  You are having a rough time of it lately and you are so sweet and supportive to everyone else. Please keep us updated and take care. You are in my thoughts and prayers sis!

                                                Love ya, Babs 

Posted 5/2/2008 1:00 AM (GMT 0)
Oh thank you Babs, you are so sweet sis! My feet aren't hurting as bad as they were but my hips are slowly starting to hurt again and I am not happy about that. I may end up calling my rheumy to see if she will up my MTX a little. I just wish we could get this joint pain under control. I may wait a bit before making the call, I think I may be in a flare or have another infection as my throat has been sore on and off for about a week.

Anyway, thank you again you are a great friend! hugs and love
Posted 5/2/2008 11:48 AM (GMT 0)

Stacie, my pain is in my fingers, toes, bottoms of my feet and my wrists. My fingers hurt the most, they get so stiff and when I open them, it feels like they are stuck in a closed position, it isn't good. I am also having pain in my right thigh, I notice it when I am sitting or laying, or when I walk.

My list of meds is in my signature. I hope you get some relief soon, it is raining here and that always makes me hurt more.

Connie

Posted 5/2/2008 12:43 PM (GMT 0)
Stacie,

  You should go ahead and call your doctor today and not suffer through the weekend...((Hugs)). I hope you get some relief soon. Please keep us updated and rest as much as you can. You are in my thoughts and prayers.

                                                            Love, Babs

Posted 5/3/2008 12:44 AM (GMT 0)
The joints in my feet, knees, ribs, neck, elbow, and jaw are affected.

Things that help me.

- Arthrotec75
- Compression socks
- memory foam mattress
- 5 ft long tube pillow (brace my knees hips and ribcage while I sleep)
- For cold nights (winter) polar fleece bed sheets...ah so warm and easy on the joints.
- Satin pajamas (for turning over easily)
- Excersize (mild non weightbaring to get the joints moving and to strengthen the mussels around the joints)

Completely pain free...no, but much much better than I was.
Posted 5/3/2008 3:03 PM (GMT 0)
My twin told me not to make my message to you yesterday too long as you wouldnt read it.  I say to her - I think they will they are GREAT on this site!

I'm always right.

I just feel you are all so great, I recognise a few individuals who are very special to me but you all are special, I find it hard to hold onto the names and context, may be due to my cognitive depletion.

PAIN, folks, is there life after dx of sjogrens and lupus?  Or is it all horizontal?

Is the pain being mentioned here of the burning type, severe burning eg in palms, feet joints etc.

Have any of ye got it running down legs like nerves on fire?

The DF118 are making me so nauseous.

I am trying to be brave, but I never was.

Twin went out to shop for plants and things and when alone I became afraid and felt awful sick, tired and oh, oh PAIN.....

Do any o ye ask why?

I just ask why I and all of us and my twin witl Parkinsons have to struggle so hard.

I cant put this in context of a god at all.

when I am with twin and she and I are feeling good together it doesnt seem so bad, alone its woeful and the depression awful..

xxAnn with lots and lots of love. devil

Posted 5/3/2008 11:35 PM (GMT 0)
Stacie,

  How are you holding up this weekend? I hope you are getting some relief from somewhere. Please update us when you can. You are in my thoughts and prayers.

                                                        Love ya, Babs

Ann,

   There is life after Sjogren's and Lupus. I think there are several different types of pain mentioned here. I also get the burning pain in the feet, hands and running down the leg, but its not constant. It comes and goes. In my case it is caused from Neuropathy. I also have joint and muscle pain from Lupus/RA/Fibro.

   I'm sorry you have a hard time when your twin isn't around. That must be rough....((Hugs)). We understand the memory problems with names and so forth. We call it "Brain Fog", it can be awful sometimes. Hang in there and take care. Your still in my thoughts and prayers.

                                                     Love, Babs

Posted 5/4/2008 12:05 AM (GMT 0)
Thank you Connie, Babs, Sits & Ann,

It seems as tho most of us have some sort of joint pain some worst than others and it's not all being controlled with meds. There has to be something out there to help. I know for me I've tried a couple of NSAIDS but there are literally hundreds of them and I don't have the patience to keep trying. Of course you have all the side effects to deal with, etc. Then you find out that what you were taking all along actually works better than the new ones you are trying...... it's a terrible thing to go through.

Babs, my hip pain is actually better today, I think I am in a flare and it was acting up. I have been exhausted for the last couple of days and that's usually the first sign for me. I was off work yesterday and took it easy most of the day and the heating pad has been my best friend, lol. Haven't done much today either but enough to get my lower back hurting worse than it has in a long time. I've not had much of an appetite so I couldn't take my MTX and other meds last night so I cooked tonight and was able to take it so I am sure that will help.

Ann, my joint hurt, not so much burning but I have had that pain in my muscles. I ask myself why all the time but then I realize things could be so much worse so I try my best to stay positive. I have my pity parties then I come here and all of these wonderful people support and encourage me and I feel better yeah . You hang in there, things will get better.
Posted 5/4/2008 3:37 PM (GMT 0)
(((Stacie)))),

   It sounds like you are having a rough time still. I hope you are taking it easy today as well. Heating pads and electric blankets are good friends to have... :-) . Hoping and praying you get some much needed relief my friend. Take care and update us when you can.

                                               Love, Babs

Posted 5/4/2008 3:58 PM (GMT 0)
Hi stacie, can I borrow the idea of 'pity parties' I love it!!!
Am still in London. Sat in wheelchair watching my twin build a new 'garden' in the lane outside her apartment block.
We had our 'together' afternoon. I was quite happy in the wheelchair. We really enjoyed the togetherness.
Did very gentle steady walking today and the numbness in lower limbs a bit better.
Think after five days in the hosptial the cells are beginning to loosen up and get some oxigen.
Twin and I are planning to buy proper property now. No point talking about our eventual set up.
I want a garden to sit under the trees.
Twin has ability at pres to work the garden, even if she has Parki.
I am more resigned now, not much but more so.
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