[KarolH]

Hi Everyone,

My computer crashed and I am using a friends lap top so sorry I have not been around much.

For the last 3 days my joints in my fingers, elbows, wrists, hips, knees and elbows have been giving me so much pain I am almost crippled. I am having a hard time functioning and have NEVER had pain like this. No swelling, just wide spread pain that is relentless and on going. I can not even sleep at night whilst taking my meds for pain.

If this continues I will call my Rheumy doctor to see why this is happening to the degree that it is. I am just wondering if Lupus can cause pain to this degree? On a scale of 1-10 I am at a 9 and ready to jump off the Brooklyn Bridge.

I am using heating pads to try and get relief along with warm baths, etc...but I just can't continue on like this. I thought I knew what Lupus pain was but I have NEVER had it to this degree.

What do you do when the pain is off the charts? Any suggestions? I hope your all doing well and thank you in advance for any helpful advice you can provide to me.

 

[sam101360]

Karol:

I am so sorry to hear you are suffering so. I suggest that you not wait, call your rhumy TODAY. No reason to suffer to see. "if this too shall pass..."

I hope you get some relief as soon as possible.

Stephanie

 

[cjmclaughlin]

I agree that you should definitely call your rheumy...I too have been dealing with major pain and my rheumy has been in contact with me every couple of days to make adjustments...I would definitely call and see what they can do for you.

Hope you get some relief.

 

[debatat]

Hi ((((((( Karol )))))))

I am sorry that you have to cope with this pain on top of everything else. Please call your rheumie and let him know so that he can give you some meds to help.

Sending you get well hugs

Deb

 

[Katharine]

Hello Karol,

As I said to you in chat Karol, I thoroughly agree with the others and feel that you should call your rheumy without delay.

Katharine

 

[KarolH]

Thanks for your replies. I did call the Rheumy and never heard back.

This is not like him at all and I am wondering if the message was given to him.

Anyway, now my skin on my right arm even hurts, sorta like when you have the flu and your scalp hurts or your hair hurts, make sense?

Anyway, I just wondered if anyone else experienced this level of pain. Anyone?????

 

[lazylegs]

Hi Karol,

I totally understand the feeling you are talking about. So sorry you couldn't nip it in the bud before it got to that point. I suggest you just spend the weekend in bed and see if that helps.

Does your rheumy have a service taking his calls on the weekend? If so you might want to try calling again to see what he suggests.

Take care,
Lazylegs

 

[onetay]

Karol,
Sorry to hear that your computer is on the frits. I know what you are talking about with the pain. I have been having that for the past couple years and it just is getting worse on some days. I have been living on pain pills the past 18 months. If I don't take them at bed time then I would not be able to sleep for the pain i would have. Lazylegs is right sometimes I have to spend a couple days in bed to get back to my normal (as I like to call it). Continue with your meds for the weekend and limit your time out of the bed to bathroom, showers(baths), drinks and food, and to change clothes if you need to. I would also keep the heating pad real close as it might help in some spots. If possible try to take a hot shower, the water coming out of the shower head sometimes helps with the muscles in the area of the joint pain. I am sorry I can not be of more help these are all things that I do when it gets bad. I would put a call into the doctor so that they can advise you, it is possible that they could up the pain med at night at least if it is not enough already. I am not sure if mine is the lupus, the ra, the bone spurs, or the tennis elbow causing the pain or all of them having a party with my body. I have tried to kick them out but they have the stronge hold right now lol. Oh yeah take as many naps as you possible can over the weekend. Hope you feel better soon Karol.

 

[Lily]

(((((((((Karol))))))))) sorry you are in so much pain.

Sometimes I end up like this and as suggested the only thing to do is take those pain meds and keep on top of the pain and go to bed. This usually helps me after a couple of days. The second consideration is do you ignore the early signs.................I find sometimes I fail to understand what is brewing and before I know it the amount of pain I am in is hard to get back from. I am slowly learning that it's best to take the meds and rest early on to avoid a full blown flareup.

In other words do as I say not as I do :rotfl:We are all guilty of it from time to time. Playing catch-up is not the way to deal with pain issues.

Hope you feel better soon :foryou:

love
Lily

 

[Joandublin]

Dear Karol

To answer your question about whether anyone else has ever been in that sort of pain, the answer is yes but thankfully not too often. That level of crippling pain is completely all consuming and totally debilitating. The last time that happened to me a few months ago I ended up in ER and the time before that was a couple of years ago so you can see its not that often.

When every joint is screaming at you and every tiny movement is causing such excrutiating pain then its definitely time for a doctors intervention in terms of pain relief and finding out what might be going on. It sounds like an almighty flare up and there may not be too much you can do about it except rest, rest, rest and take whatever pain medication you can. I know you have issues with medication because of your stomach problems so it might take some hospital or in-patient interventions to help you.

At the infrequent times I got to that level of pain it lasted anywhere from about four days to ten days before the pain started to recede to something resembling manageable.

You have every bit of my sympathy on this one :hugbetter: :hugbetter: Its the kind of pain that leaves one in tears....

I hope your Rheumy has been back in touch by now.

Luv n stuff
Joan:rose:

 

[greenhaggis]

Karol,

Yes, I have felt like you over a year ago before I started on meds! I spent weeks with major joint pain, flu symptoms, head feeling like its was going to explode with pain wondering what was wrong and plenty of tears due to this.

Apparently it was a flare and once they diagnosed flare due to certain bloods I was then immediately started on pred as well as starting plaquenil for first time.

I know you are on many meds already, but it seems that you will need to ask for more urgently to help bring things under control help, and get plenty of rest in meantime.

Lots of gentle hugs!

 

[pollianna]

I had the same experience as Green haggis. Even got sent to a pain management clinic as it was so bad. I got through it and the pain subsides. it didn't for years. be kind to yourself have a nice long radox bath if you can. it used to work wonders for me

pxx

 

[BigSis]

Hi Karol
You've obviously been flaring badly and not surprising after all you and your family have been through lately.

In answer to your question as to whether lupus can cause such pain...............OOOOH yes.
I remember well feeling the type of pain that makes you yelp in the night as well as the grinding joint pain,,,,,like someone is prising your joints apart with a blunt knife.:worried: Even my jaw joint was so stiff and sore that I couldn't open my mouth in the mornings.
Also I remember the flu-like feeling where your clothes hurt your skin.
The only thing that helped was steroids (very rapidly)and with the plaquinel added I haven't had pain like it since (touch wood and crossing fingers).
I hope by now the docs are helping you.

 

[florie]

Hi Karol,

I am going threw the crippled part too. My Rhumey has no answers but fibro.
I just got some exrays done. The only relief i get is from my chiro. He makes adjustments and puts everything back in place. He does not recommend heating pads, but moist heat. He says it will bring on my lupus. you know how we feel with heat and humidity and sun. I also saw my reg.MD. She has prescribed a medicated pad that I use on my lower back and neck. I refuse to take pain killers, or muscle relaxers.That is not getting to the root of the problem.If you have insurance then ask you doc to prescribe Lidocaine. You can wear it for 12hrs. It is helping me till we get the exrays. If the exrays don't show anything then I can get an MRI,which i wanted from the get go. But according to insurance rules i get the exrays then i can get the MRI.
I don't think hot baths are good for you. I feel if it is a flare it will make it worse.
I do hope you get some help and relief real soon.
hugs,florie

 

[BigSis]

Hmmm,
I believe chiropracters are good for some chronic conditions.
Not sure they should be manipulating acutely inflamed joints.
Not sure though.......somebody who knows better might come along.

 

[LolaLola]

Dear Karol,
I have a pretty high pain threshold but a few weeks ago was in the sort of pain that made me yelp! Trying to butter a slice of toast was too much.
I really hope your Docs.can get this under control. I know you have had a lot of demanding physical and emotional stuff lately. Wish I was there to support you.
x Lola

 

[KarolH]

Thank you all for your replies here.
My next appointment is March 10th with the Rheumy but I wont be waiting that long. I am calling tomorrow morning, 8am sharp and will be getting some answers. I am typically against steriods but not this time as it is so bad I will do anything for relief of the pain.
I use Percocet and Fentanyl patches and neither is touching the pain, only slightly taking the edge off and I also have a very high threshold for pain so I know this is bad.
If I do steriods it will be IV steriods because of not having a stomach but like I said...at this point I will do anything. I just need help.
I hope your all well and will keep you posted. I am just glad to hear that pain this severe can be associated with Lupus. For a while there I thought maybe this was another brick on my wall of auto immune diseases.

 

[birdie]

I am so sorry to hear that you are flaring badly, hope you get to see your rheumy quickly and get some pain relief. I am surprised that you have not flared before this with everything that you have had to cope with in this past year.

Just sending healing vibes and cyber hugs to you (they are gentle ones to they won't hurt you):hug:

 

[KarolH]

Thanks Birdie,

I appreciate the hugs and kind words.

I hope your well.

 

[sandy123]

Dear Karol

Sorry to hear you are in so much pain at the moment and i hope you get some relief soon,sending you lots of gentle hugs.
Love from Sandy