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Hip shoulder and knee pain

joint pain

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#1 mando621

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Posted 02 February 2012 - 11:39 AM

Hi folks.

It has been a long time since I've been into the forum. I was coping with things pretty well, and I was feeling quite good. All of a sudden my hips are terribly painful. My shoulders are getting bad, like just before my shoulder surgery 3 years ago. The backs of my knees are so stiff after sitting for a while I have trouble standing at first.

Last night was bad. I have been trying to not sleep on my side which bothers my shoulders. My hips were hurting and I just couldn't fall asleep. I finally got up and took some ibuprofin and eventually finally got a little sleep. In the morning I had terrible heart burn and the golf ball feeling in my esophagus. Great, I've irritated my poor esophagus.

I have an appointment to see my general practitioner next Friday, and I hope I can make it till then. I see my rheumatologist March 6.

I think this feels like tendons or ligaments that are sore. Possibly bursitis especially of the hips. Is this typical of connective tissue disorder or is it just an age thing. I'm 48. I've been walking to work about the same time I got the really sore hips. I'm fine in the morning, but if I sit for a while during the day I end up with sharp pain in the outside of my hips when I try walking. I am a little sore at night, but we just got new beds. The other night at the grocery store, I was using the cart like a walker to get around. It hurt so much to put my weight on my hips.

I thought I'd read an older post about joint pain like this. Other than NSAIDS which are not good for my esophagus dysmotility and reflux are there any other options? I'm not on Plaquenil because it gave me such gastric distress in the past. The only medication I really am on is Restasis (cyclosporine).

Mando.

#2 Joelf

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Posted 02 February 2012 - 12:30 PM

Hi Mando,

It's good to hear from you again, although I'm sorry it's because you're having suffering with painful joints.

I can empathise with you; one of the worst aspects of Scleroderma for me has been the painful joints and Raynaud's (surprisingly enough, not my lung involvement.) Even on the low dose of steroids I take, my wrists, knees and to a certain extent, my hips are still a bit painful, although it does vary from day to day. I think that joint pain is a feature of connective tissue diseases, although getting older certainly doesn't seem to help and I'm afraid I shan't see 48 again (and haven't for a long time......boo hoo!! ;) )

I've found a couple of threads Joint Pain - MCTD? and Arm and leg pain and also a link to our Pain Management page which I hope you'll find helpful and informative.

I do hope that your appointments with your general practitioner and rheumatologist are productive and that they're able to prescribe some medication to help you.

Kind regards,

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#3 red

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Posted 04 February 2012 - 08:12 AM

Hi Mando, sorry to hear of your painful flare up, I can empathize as well as I've suffered for years with first, the shoulder pain, starting in my early 40's, then the hips joined in at around your age. I think it's part of the connective tissue disease (reminds me of a song that has a line "I'm too young to feel this old"!) I can't take the normal NSAIDs either because of esophageal issues, but am on a Cox-2 inhibitor (a newer form of NSAID which has supposedly less GI side effects) - have taken it for a few years now without recurrence of my esophageal ulcers (but I did have a fundoplication which has certainly helped the reflux problem). I was also given a topical NSAID cream to use, but it didn't help me, maybe you would have more success with that.

I had cortisone injections to both hips a few years ago, when I was diagnosed with bursitis of the hips - did help a bit. If you do get an injection, make sure you rest for at least 24 hours afterward - it will help the cortisone "stay in place" as my physical therapist put it -- giving you a better and longer benefit. Then I did around 6 weeks of physical therapy. Pain came back within a year, but I did have a reasonable short-term period of relief.

Heat pads, whirlpool baths if you have access to one, may help you too. Also, I have a script for lidocaine patches, which help the pain in my wrists a lot. They help less so on my hips, but even partial relief is welcome!

You mentioned you had surgery on your shoulder? May I ask what you had done and how you fared with it? My orthopaedic surgeon has recommended a total shoulder replacement for me, I'm still trying to decide if it's worth going through...

Hope your doctors can help you out,

Red

#4 Shelley Ensz

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Posted 08 February 2012 - 07:44 AM

Hi Mando,

It's great to have you back again, but I'm sorry it's because you're having some more issues.

As I understand it, scleroderma is a form of arthritis. Actually, the worst form. So it is very common for us to have joint pain with it, and also for us to be more sensitive than the average person to changes -- for example, changes in activity (your walking to work), mattresses (new doesn't always equal the best!), pillows, shoes (are they suitable for walking to work?), etc. I would say that you take scleroderma and then add in all of the above and you are almost guaranteed to encounter some pain issues.

Work with your doctor on this, and then also look into things like: consider getting a 4" thick mattress topper for your new mattress (we had to do this and it helped with some of my hip pain), setting a timer at work so that you get up and move every 30 minutes. It doesn't have to be much, but enough to get out of the chair.

Look at your work chair and make sure you have an ergonomic set up altogether, because odds are excellent that you don't; but your hips could still be sore from the mattress plus the walk to work.

Could you drive to work for a few days and see if it relieves some of the pain? If it does, take a serious look at your walking shoes, and replace them every 6 months. Consider consulting a store that specializes in shoe fitting. Like as not, you could be wearing the wrong type of shoe for your foot, or they need replacement.

Your doctor might be able to prescribe some pills to get you by temporarily. Usually we are better off with the stronger stuff as there are fewer long term side effects. And that sharp pain surely needs to be examined.

You are very wise to also consider all the basic changes that can help, too. We are very susceptible to joint and tendon problems, so we need to pay attention to all the little details that healthy people might be able to ignore and get by just fine with.

Those days when we could sleep on the floor and then go for a nice long walk barefoot, and sit all day at work without stirring, are long gone. It may also be sad to trade in our fancy high heels (or cheap tennies) for sturdy orthopedic shoes but it is better than being so hobbled we can hardly walk!

Please let us know what measures you take that help resolve all of this. It would be delightful for you to feel a bit better, wouldn't it?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#5 mando621

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Posted 08 February 2012 - 12:18 PM

Thanks everyone for your input.

I had to move my appointment since my doctor was out of the office. I did try to limit my walking a bit, now that we are back to all of our cars that will be easier. The new bed is adjustable, so that I can sleep inclined for GERD. I notice that if I sleep with my knees bent, I end up with more hip pain in the morning. I put a pillow next to me to keep me from rolling on my bad shoulder. I'm also doing my physical therapy exercises for my shoulders.

I do get up often, and more often than not I'm on my feet most of the time I'm at work since I teach. I have to watch how I'm standing so that I don't rest on one hip/leg.

I have orthotics for my shoes and they were checked again this summer. The orthotist thought they were fine and would be good for years of use.

I wonder if there would be some form of exercise I could use to help my hip area get stronger so that I wouldn't have so much pain. I did squats the other day - bad idea. I was doing some ballet exercises from my past days as a dancer (5 years - 13 years old). I thought that was going well, I guess I added too much walking to the picture too fast. I stand in 5th and 2nd position (ballet style) much of the time. I'm sure this isn't helping my hips. Introducing new shoes can be a bad thing for me. I've had unbearable heel pain or leg pain from a new pair of shoes.

Thanks again.

Mando.

#6 mando621

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Posted 08 February 2012 - 12:31 PM

Red,

The shoulder surgery was to help a shoulder separation that had not improved. I fell carrying a laundry basket over the gate at the bottom of our stairs. I hit my shoulder on the wall to catch myself and ended up with a shoulder separation. I was going through physical therapy when I felt a snap in my shoulder putting on my coat. They thought I had torn something. I wasn't getting any help from the therapy. I couldn't raise my arm up. So they took 15mm off my clavical bone, shaved the acromium bone, and cleaned up the fraying bursa. It wasn't a fun recovery, and I can still feel tightness in that shoulder but it is much better now. As is happening right now, I go for a while with no problems. Then I do something that irritates my shoulder and I have to work on the therapy exercises with the elastic band to build up my muscles again. I am able to play my fiddle again. I go to two sessions a week and between the 2 play for about 5 hours. That is probably more than I should at one time (3 hours sometimes at a time). So the exercises help.

If you are considering shoulder surgery for something, just be aware that the recovery can be long. A joint replacement might be easier than what I had done. Everyone is different. I'm glad I did it, but I'm trying to avoid having any problems with the other shoulder because I wouldn't go through it again without major hesitation.

Mando.

#7 Amanda Thorpe

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Posted 08 February 2012 - 06:21 PM

Hello Mando

Sorry you're having these problems. Weirdly joint pain is the one thing I don't have but I do get stiff if I stay in one position to long.

Good for you to keep playing the fiddle!

Take care.
Amanda Thorpe
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#8 Shelley Ensz

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Posted 09 February 2012 - 07:03 PM

Mando, yes, you might want to introduce those ballet moves more slowly.

I've taken ballet classes but, like a hundred thousand light years ago. If I struck a pose now, I'd probably fall flat on my face. Some of the poses are surely intended to pop your hip sockets out so far that they spring loose and land in the next county.

Yup, you take a good pose and add scleroderma, say goodbye to your hips and hello to the hip replacement team! Just kidding, but do use some caution until you're sure nothing's busted in there, okay?

And for your exercise instead, we could all do a Sclero Happy Dance! Not that there's all that much to be happy about, but with this, you can get in some good exercise without risking any bodily harm:
:emoticons-line-dance:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 mando621

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Posted 12 March 2012 - 07:16 AM

Well, I saw the rheumatologist last week. He ordered X-ray of hips. I got a very short note that mild oesteoarthritis is in the right hip, and possible oesteoarthritis of the left hip as well. I have an order for physical therapy to see if that might help. I also have a PFT scheduled for later in the month. I asked if I had to do any more testing since I don't really have a clear diagnosis based on blood work. He told me that I should have PFT since that is one of the risks that increases as time goes on especially for those with SINE form.

I had more blood work and that all came out within normal ranges, once again. I started plaquenil and I have an eye doctor appointment for next month. So I guess that brings me up to date on all my stuff. Now, I have to call the GI doctor back to see what he has to say after EGD came back without any issues. My motility is getting worse, but at least I don't have any serious issues in the esophagus or stomach that are beyond that.

Mando.





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