Author Topic: Muscle and joint pain & stiffness  (Read 717 times)

Babs53

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Muscle and joint pain & stiffness
« on: May 30, 2013, 04:16:58 PM »
Hi! I'm a newbie, but not to Sjogren's.  I've lived with it for over 15 years.  I've was diagnosed with elevated ANA, and lip biopsy.  I've also been diagnosed with CNS involvement.  I take tons of meds, including Plaquenil, Cellcept, Mysoline, Clonazepam, Gabapentin, and Mirapex.  I am 60 yrs. old and today, was finally forced into total retirement.  I've recently started to suffer from debilitating muscle and joint pain and stiffness.  I also take one Celebrex in the AM.  None of these meds are helping this pain and stiffness.  It was getting just so difficult to get up, get dressed, and go into a job.  I also started caring for my infant granddaughter about 9 months ago.  My daughter is a single mom, and they both live with us.  I suspect the stress of trying to care for a baby, work, and carry on with daily tasks, might have pushed me to this point.  What kind of suggestions can anyone offer me for relief?  I do have access to a warm therapy pool, which since I'm now retired, I hope to be able to use a couple times a week.  The pain can be life changing...hard to do anything.  Of course, no one understands, because I look totally healthy.  Suggestions, encouragement?   Thanks!
 :(
Blessings!
Barbara

Jellyb

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Re: Muscle and joint pain & stiffness
« Reply #1 on: May 30, 2013, 04:34:21 PM »
Hi Babs,
I am so sorry that you are in such pain.I cannot imagine having a little one to look after with all that you have going on, but such a joy to have a grand baby .

I don't have much to offer except, I have found some releif in taking tumeric supplements twice a day and I see an acupuncturist for my back issues which has helped immensely. I was not a believer in either but have been pleasantly surprised at how much it has helped.

Others will post more ideas I am sure

Take care
Primary sjogrens, Raynauds.
Magnesium, vitamin C, tumeric, low dose estrogen.

Multiple chemical and food allergies
Gluten free

litliwlowa

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Re: Muscle and joint pain & stiffness
« Reply #2 on: May 30, 2013, 05:25:44 PM »
Hi Babs

I recently started taking turmeric (curcumin) and am finding it helpful.

I think you hit the nail on the head though about taking care of your granddaughter being an additional stressor contributing to the increase of your pain and stiffness. Her level of activity alone would be a stressor comparatively. However, your situation is what it is.

Is it possible to occasionally have a friend or even hire someone to help you with her a day or two a week? Just a thought.

When we have limitations, we have them and all we can do is get a little creative working around them. As much of a joy it is to care for your granddaughter, still got to make time to take care of you.

I haven't tried this yet myself, but I have heard that soaking in a bath of epsom salts is supposed to be good for muscle pain and inflammation. Epsom salts are low cost. I know when I was little we used them even for sprains and such.
Sjogrens Primary; Hashimoto's AI Thyroiditis, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, Facet Arthropathy (L & C spine), Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies (drug, food, MCS, etc) and more...

Cassi307

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Re: Muscle and joint pain & stiffness
« Reply #3 on: May 30, 2013, 05:54:48 PM »
Babs
We are close in age and I also retired due to health issues but that was before I was diagnosed with Sjogren's. I have been on Plaquenil a few months but the stiffness has been a definite problem. My rheum just put me on the generic form of Neurontin and I pray that it will help. I am working part time and really want to continue doing that but some days it is hard to walk after standing on my feet.

I wish I could offer suggestions but you seem to have covered some of them. The therapy pool sounds like a great idea. I want to try accupuncture but can't find one in myo area that my insurance will cover. Maybe with one less thing on your agenda it will get easier.
Sjogren's with myositis overlap,  ckd, asthma, chronic costochondritis, osteopenia, neuropathy, Plaquenil, cardizem, low dose aspirin, krill oil, Lyrica, Salogen

Babs53

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Re: Muscle and joint pain & stiffness
« Reply #4 on: May 30, 2013, 06:47:31 PM »
Thanks for the comments and suggestions.  I did have my daughter put my granddaughter in daycare full-time, but my daughter works retail, goes out on dates, and I get a lot of nights and weekends with my granddaughter.  I found lifting her cars seat to be too much of a strain on my shoulders, so now, I just take her in and out of it.  She's only 20 lbs., but I tire easily when taking care of her.  I have a new grandson on the way, end of June, and they wanted to know how much they could count on me for daycare!  The problem is, no one can tell by looking at me, that I hurt so much.  I look totally healthy.  I'm sure you all know that feeling.  I do get up into a standing position like I'm 20 yrs. older than I was.  Well, retiring will help, the warm therapy pool will help, and I think I will ask my doctor about Neurontin also.
Barbara
Blessings!
Barbara

SjoGirl

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Re: Muscle and joint pain & stiffness
« Reply #5 on: May 30, 2013, 07:03:00 PM »
Moving around is the thing that helps my stiffness the most, but your situation sounds more advanced than mine.
Raynauds, SjS, Anemia, neutropenia, leukopenia, thrombocytopenia, osteopenia, Plaquenil, Fosomax, multivitamin with iron, Vitamin D, and Feosol (if my iron levels really dip).

Babs53

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Re: Muscle and joint pain & stiffness
« Reply #6 on: May 30, 2013, 07:13:17 PM »
I think it will be bad for me to not move around.  Just because I don't have to punch a time card anymore, I think I will still need to keep my joints and muscles moving.  The warm water therapy pool has an arthritis class that is very affordable, and now I have time to attend.  Just saying, it hurts to move around!  Even my feet hurt!  Love the comments and suggestions!
Blessings!
Barbara

litliwlowa

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Re: Muscle and joint pain & stiffness
« Reply #7 on: May 30, 2013, 07:16:13 PM »
Thanks for the comments and suggestions.  I did have my daughter put my granddaughter in daycare full-time, but my daughter works retail, goes out on dates, and I get a lot of nights and weekends with my granddaughter.  I found lifting her cars seat to be too much of a strain on my shoulders, so now, I just take her in and out of it.  She's only 20 lbs., but I tire easily when taking care of her.  I have a new grandson on the way, end of June, and they wanted to know how much they could count on me for daycare!  The problem is, no one can tell by looking at me, that I hurt so much.  I look totally healthy.  I'm sure you all know that feeling.  I do get up into a standing position like I'm 20 yrs. older than I was.  Well, retiring will help, the warm therapy pool will help, and I think I will ask my doctor about Neurontin also.
Barbara
Barbara

It's okay to set some limits on your availability for her "dates", as one example. You don't even need to explain, defend or justify it to your daughter.

Part of her job as a parent is to prioritize and balance the needs of her baby daughter with her own. Just because she is a single parent and has you to help her out with your granddaughter isn't a free pass for her from parenting responsibilities.

If you don't set some limits now on your availability, you risk her taking advantage of the situation to your own detriment given your health issues.

"Dates" are not necessities, even for a single parent. Her job, I can see helping her out in that way. But set limits on when you are available to take care of your granddaughter, that is part of taking care of you.

Hugs and Prayers

Litli Wlowa
Sjogrens Primary; Hashimoto's AI Thyroiditis, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, Facet Arthropathy (L & C spine), Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies (drug, food, MCS, etc) and more...

Babs53

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Re: Muscle and joint pain & stiffness
« Reply #8 on: May 31, 2013, 06:24:37 AM »
Thanks for the comments and suggestions.  I did have my daughter put my granddaughter in daycare full-time, but my daughter works retail, goes out on dates, and I get a lot of nights and weekends with my granddaughter.  I found lifting her cars seat to be too much of a strain on my shoulders, so now, I just take her in and out of it.  She's only 20 lbs., but I tire easily when taking care of her.  I have a new grandson on the way, end of June, and they wanted to know how much they could count on me for daycare!  The problem is, no one can tell by looking at me, that I hurt so much.  I look totally healthy.  I'm sure you all know that feeling.  I do get up into a standing position like I'm 20 yrs. older than I was.  Well, retiring will help, the warm therapy pool will help, and I think I will ask my doctor about Neurontin also.
Barbara
Barbara

It's okay to set some limits on your availability for her "dates", as one example. You don't even need to explain, defend or justify it to your daughter.

Part of her job as a parent is to prioritize and balance the needs of her baby daughter with her own. Just because she is a single parent and has you to help her out with your granddaughter isn't a free pass for her from parenting responsibilities.

If you don't set some limits now on your availability, you risk her taking advantage of the situation to your own detriment given your health issues.

"Dates" are not necessities, even for a single parent. Her job, I can see helping her out in that way. But set limits on when you are available to take care of your granddaughter, that is part of taking care of you.

Hugs and Prayers

Litli Wlowa

Dear Litli Wlowa,

I hear you loud and clear. I'm such a wimp about setting limits like that, but everything you said has been said to me before.  My daughter was in a crisis pregnancy, and I assured her I'd be there to help with the baby. I do think she crosses the line sometimes, and needs to become an adult. Her baby is her first priority. I just feel guilty saying "no".  Trust me, we've had our disputes over this.
Babs
Blessings!
Barbara

Cassi307

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Re: Muscle and joint pain & stiffness
« Reply #9 on: May 31, 2013, 06:39:10 AM »
Barbara you mentioned in an earlier post that you will ask your md about Neurontin but then I retread your initial post and noticed you are on Gabapentin which is the generic form. Maybe the generic isn't working for you or maybe you need the dose adjusted.

Hope you find a solution. I know what it means to feel like your body has locked up on you.
Sjogren's with myositis overlap,  ckd, asthma, chronic costochondritis, osteopenia, neuropathy, Plaquenil, cardizem, low dose aspirin, krill oil, Lyrica, Salogen

litliwlowa

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Re: Muscle and joint pain & stiffness
« Reply #10 on: May 31, 2013, 07:35:47 AM »
Dear Babs

Been there done that. First, there is nothing to feel guilty about when saying "NO". She chose to engage in behavior that resulted in the baby, right?

Well, part of teaching her to be a good mom is drawing that line in the sand. Part of teaching her to be a good mom is also allowing her to experience the consequences of her own choices. One of those consequences is that your granddaughter, her daughter, has greater priority over your daughter's "wants".

The longer you allow this situation to continue, the harder it's going to get. Yes, I would agree it is easier to just give in. However, easier is usually not what is best - for all involved.

Time for tough love with her, Babs. Not only because of your medical situation, but your granddaughter needs her quality time with her mother especially during these early years and that is time your daughter will never be able to make up for.

Another way of looking at it? Your grandaughter is learning from her own mother even at her young age of 9 months that her mommy is putting other things ahead of her. Just because the baby's age is young doesn't mean she isn't learning.

Children are like barometers and no dummies by any stretch of imagination. They also internalize and blame themselves as their fault even when it isn't. These early patterns of your daughter are affected your granddaughter even tho she is so young and not observably affected.

However, way down deep in there, your granddaughter's security is in your daughter in whose belly she was carried for nine months. Perhaps an approach along those lines would be less confrontational with your daughter.
Sjogrens Primary; Hashimoto's AI Thyroiditis, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, Facet Arthropathy (L & C spine), Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies (drug, food, MCS, etc) and more...

Carolina

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Re: Muscle and joint pain & stiffness
« Reply #11 on: May 31, 2013, 08:13:32 AM »
Dearest Barbara,

I have a couple of auto immune conditions, an immune deficiency, severe osteoarthritis, and severe peripheral neuropathy.

All cause pain and fatigue, and the PN makes it hard for me to walk, even slowly.

My lifesavers for pain:  Cymbalta, Aleve, Turmeric, Pain Coping Skills (meditation, relaxation and others), and mild water aerobics in the heated pool or even in the regular pretty warm pool at the health center.

I cannot take the opioids (codeine or any of the other RX for pain).

Over doing brings on flares, with everything above on overdrive, plus outrageous pruritis (unbearable itching), and often results in an outbreak of cold sores.

Needless to say, I do NOT over do.  Payback is a b...h. when I do.

Last Friday we had 3 couples for dinner, my husband did the vacuuming, and STILL, I had a three day flare of misery.

Sometimes saying NO is a way of saying YES to yourself.

YES I will be more available for my life.

Hugs

Elaine


Female. 72 CVID.Sjogren's,IC.Periph.Neuropathy.Anemia,Copper Def.Raynauds,CAD,Osteoarthritis,Blepharitis,Meniere's/Deafness.Hiatal Hernia,Fordyce Spots,IVIG Gamunex,Medrol Atenolol,Pilocarpine,Aleve,Copper,Cymbalta,Nasonex,Lipitor,Estrogel,B-12,Iron,Alpha Lipoic,D-Mannose,NAC,Co-Q10,Turmeric,O

Babs53

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Re: Muscle and joint pain & stiffness
« Reply #12 on: May 31, 2013, 01:31:35 PM »
Barbara you mentioned in an earlier post that you will ask your md about Neurontin but then I retread your initial post and noticed you are on Gabapentin which is the generic form. Maybe the generic isn't working for you or maybe you need the dose adjusted.

Hope you find a solution. I know what it means to feel like your body has locked up on you.

Cassie, Very quick of you to pick up on the Gabapentin!  I know it is generic for Neurontin, and I'm on a very low dose (300 mg) at bedtime.  My neurologist had to change me to Gabapentin when a long acting form of this medicine (I can't recall the name), was taken off the market by the manufacturer.  It was prescribed for restless legs.  So he replaced it with 300 mg of Gabapentin.  I do have a call into my Rheumy to see if a larger dose, might help more during the day.  My pharmacist says that 300 mg is a very low dose for pain like mine.
Blessings!
Blessings!
Barbara

Babs53

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Re: Muscle and joint pain & stiffness
« Reply #13 on: May 31, 2013, 01:42:24 PM »
Dear Babs

Been there done that. First, there is nothing to feel guilty about when saying "NO". She chose to engage in behavior that resulted in the baby, right?

Well, part of teaching her to be a good mom is drawing that line in the sand. Part of teaching her to be a good mom is also allowing her to experience the consequences of her own choices. One of those consequences is that your granddaughter, her daughter, has greater priority over your daughter's "wants".

The longer you allow this situation to continue, the harder it's going to get. Yes, I would agree it is easier to just give in. However, easier is usually not what is best - for all involved.

Dear

Time for tough love with her, Babs. Not only because of your medical situation, but your granddaughter needs her quality time with her mother especially during these early years and that is time your daughter will never be able to make up for.

Another way of looking at it? Your grandaughter is learning from her own mother even at her young age of 9 months that her mommy is putting other things ahead of her. Just because the baby's age is young doesn't mean she isn't learning.

Children are like barometers and no dummies by any stretch of imagination. They also internalize and blame themselves as their fault even when it isn't. These early patterns of your daughter are affected your granddaughter even tho she is so young and not observably affected.

However, way down deep in there, your granddaughter's security is in your daughter in whose belly she was carried for nine months. Perhaps an approach along those lines would be less confrontational with your daughter.

Dear litliwlowa,
Your words ring loud and true.  She absolutely put herself in this position, but she wanted to take the easy way out.  I was the only one who spoke life to her, and begged her to have her baby.  I did promise to help her, and my husband and I have changed our whole lives to open our home to her and her daughter.  I was there for my daughter, at Kylie's birth.  I spent over 24 hrs. on a couch, held her legs while she pushed, and ran back and forth for two days to be there for her.  When I drove home from the hospital, after Kylie was born, I don't even know how I made it home.  I was so exhausted.  We have totally spoiled my daughter, by doing so much for her, that I don't think she really understands how much it has affected my health.  Thank you for your strong, but so true advise.  I guess the best thing for me is to take baby steps, and make her start taking more and more responsibility for herself and her daughter.  She is 31, she's not a teenager, or someone in her early twenties.  She's a college graduate with a great career!  I'll let you know how things go!
Blessings!
Barbara

tamaran17

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Re: Muscle and joint pain & stiffness
« Reply #14 on: May 31, 2013, 01:48:40 PM »
i'm still new at this but acupuncture has done wonders for the joint pain and fish oil along with an anti-inflamatory supplement i take are usually good. i'm at the point now with acupuncture i just go occasionally but its well worth it.