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TERRIBLE Muscle Pain All Over!


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16 replies to this topic

#1 Peggy

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Posted 21 November 2008 - 05:02 AM

Just needed to vent..............I have the most horrific muscle pain in every single muscle pain of my legs, arms, but, hips and shoulders. It hurts so bad I'm having a hard time trying to re-direct my thinking as it's so bad its all I can think about. I guess it's time to change the pain patch from 75mg to 100 mg but I hate to do that because what's going to happen when that's not enough. I'm only 49 and I could have a long haul with this and it scares me on what I'm going to do for any type of relief. I know there have been some who go into the ER when it gets really bad but what can they do for it? I just needed to vent as this disease is really challenging and makes it so hard to do even the simple things of daily life.

Warm hugs,

Peggy

#2 Sweet

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Posted 21 November 2008 - 06:07 AM

Hey Peggy,
*hugs* to you. I think I answered you on another forum already, but do you have a friend that can come and help you with the chores you were worried about getting done? Some days I feel you just have to give into the pain and rest, or you make matters worse.

I do hope you can find relief, and I think if you went to the ER perhaps you could find a bit of relief there. I understand your fears about what you'll do in the future if you are already using quite a bit of meds for pain. I've voiced that to my doctors often.

Hoping as the day goes on, you'll get some relief.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 annkd

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Posted 21 November 2008 - 06:12 AM

Hi Peggy - I wish I had a quick fix for your pain! What has you doctor said about the cause? Is this some kind of "flare up"? I'm noticing alot more joint and muscle inflammation problems and I wonder if the colder weather is playing a part in it. I'm so bundled up that this morning my husband took a look at me and went into hysterical laughter....I didn't join in. For better or worse, yes? Anyway, keep us posted and vent away, it is healthier than keeping it all bottled up. Hugs, Ann

#4 debonair susie

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Posted 21 November 2008 - 09:25 AM

Hi, Dear Peggy...

I love the prescription sweet has suggested...go for it, Girlfriend :D

I wish I had a little elf, too!

As Ann mentioned...this time of year really does a number on me...

I get grouchy...cold weather is not good...I avoid going outside as much as I can...I really become a hermit, when the temperatures drop. :P


Anyway...stay warm and cozy, everybody!

Warm and Loving Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#5 Snowbird

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Posted 21 November 2008 - 10:40 AM

Hi Peggy

I hope you get some relief and quickly!! Maybe they can help you a little at Emerg, won't know I guess unless you decide to try it? Let us know how you make out either way.
Sending good wishes your way!

#6 canon

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Posted 21 November 2008 - 07:29 PM

Hi,

Peggy sorry you are feeling so poorly. Do what you need to do to feel better. Do the doctors give you anything for breakthru pain so it doesn't get to the point of no return? Maybe your doctor would consider that too until the pain is under control. This weather has been brutal so far and my muscle pain has been worse the past couple of months too. Mine give me breaks though so yours does sound much more acute than mine. Peggy take care of you and do what you need to do.

With gentle thoughts,

Judy
A happy heart is good medicine.

#7 susie54

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Posted 22 November 2008 - 03:15 AM

Hi Peggy,



Sorry about all your muscle pain. I get it bad sometimes too in the legs and arms and buttocks area especially.
Like you, I want to do anything to get rid of it. I wish I had an answer. Sometimes it feels like you can't even move a muscle it hurts so much. I hope you find relief soon. Susie54

#8 Sweet

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Posted 22 November 2008 - 11:08 AM

Hey Peggy,

I am kind of worried about you. Were you able to get any relief?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Peggy

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Posted 23 November 2008 - 06:49 AM

Decided to go into the ER and received by IV pain meds. They worked and I went home and was able to sleep. Unfortunately by Saturday morning the pain was back. So now I plan to go and see the doctor on Monday and see if there's something else we can do. I must be getting too used to the pain patch so it isn't working as well so hopefully he can come up with something else that can provide constant relief. Even today the pain is terrible again. I hope he has something that will work.

Warm hugs,

Peggy

#10 Sweet

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Posted 25 November 2008 - 06:11 AM

Hi Peggy,

I hope you did go to the doctor yesterday and they were able to come up with a new game plan for you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 smac0719

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Posted 27 November 2008 - 03:15 PM

Peggy,

I am so sorry you are in so much pain. I hope you are able to find some longer lasting relief very soon. Hearing about your pain patch makes me wonder if it will work for my back. I have been in excrutiating pain lately.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 Peggy

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Posted 29 November 2008 - 06:30 AM

Sorry for being so late on responding to what I've done about the muscle pain but my brother-in-law passed away from leukemia (he was only 63 and just found out he had it in October) so things have been crazy.

I called my sclero doctor (I have a new one and haven't seen him yet and am scheduled in January for another quarterly appointment). His assistant said I should come in. I decided to start with my local doctor as my sclero doctor is 3 1/2 hours away and just wasn't up to making that long trip. Throughout this whole process my pain end of things has been managed by my local doctor anyway. My sclero doctor thought I am in a full sclero flare though.

I went into the clinic for a 11:45 a.m. appointment and didn't get seen until 1:15! By the time they called my name my legs were in so much pain from sitting in one position I could hardly walk.

Well he decided to change the pain med for the outbreak pain that I get that the pain patch doesn't cover. He thought that the one I'm taking my body has built a resistance to. If that one doesn't work he will try another one and the last resort is a pain med that you spray into your mouth. He doesn't like prescribing that one though as it's highly addictive. He also said to take motrin in addition to the pain med.

I am still in pain but it's not as horrific. The nights are the worst when I wake up and the pain med has worn off. I can hardly get out of bed. The cold weather isn't helping either. It sure doesn't take much to bring on a Raynaud's attack that's for sure.

Thank you all for your posts. I hope that no one else suffers from this like I do. One thing that was amazing is that my local doctor said he has 2 other patients that have Sclero and Polymyositis and have the exact same thing as I do in the muscle and joint pain. One of them even has home health coming in to help her. I also plan on asking my sclero doctor in January if he thinks massage therapy would help.

Again, Thanks and

Warm hugs,

Peggy

#13 Sweet

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Posted 29 November 2008 - 07:35 AM

Oh Peggy,

You have too much going on at once my Love.

I sending healing warm vibes to you and your family. I'm so sorry to hear about your brother in law.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#14 debonair susie

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Posted 29 November 2008 - 08:21 AM

I want to express my Sympathy, Love to you and your family, Peggy... for the loss of your brother-in-law.

My understanding of the Polymyositis...is that it can be very painful. I so hope that there is something that can be done to alleviate your suffering with it.

Hugs,
Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#15 canon

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Posted 29 November 2008 - 06:10 PM

Peggy,

Will keep you and yours in my thoughts and very sorry about your brother in law.

Hope the new medicine helps you and that your pain will improve daily. This really has been a bad year for raynaud's too. I too am waiting for that to settle down and we wait and wait.

With gentle thoughts,

Judy
A happy heart is good medicine.

#16 susie54

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Posted 01 December 2008 - 02:09 AM

Hi Peggy,

I was wondering if your muscle pain is better. I hope your new meds kicked in. This is the one symptom that my rheumatologist does not understand and that is why I am going for the muscle biopsy in January. Pain and weakness. The only relief I get for this right now is rest, heat ( anytype) like rice packs , hot tubs, and massage really helps when I get it once a month. I wish they could prescribe that but no luck.It just seems the pain meds don't cut through it. I hope you are better. Susie54

#17 Peggy

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Posted 01 December 2008 - 02:28 PM

Thank you everyone for your kind thoughts. It is going to be a tough week.

I had the 1st of my 3 IVIG's today. Got sick again in the afternoon and once I got some additional meds it helped.

My muscle pain is the same but the new drug seeems to help more than what I used to use. I think this is more from the Polymyositis than it is from the sclero but I'm not sure. It's the worst in the legs and when the pain is constant it gets really bad. It also limits what I'm able to do as when I over-do it the pain is that much worse.

I have been reading with interest the blog about the stem cell transplant and was able to find out that BCBS is actually paying for it for her which amazed me. I plan on asking my new doctor in January if he thinks it's something I should maybe pursue being my lungs are getting worse.

Warm hugs,

Peggy