View Full Version : I hate to be a complainer....

09-06-2006, 08:09 AM
It just seems like every week I have something new going on, and I just don't feel like my doctors are always listening....

Anyway, for the past 15 days or so, my right shoulder has been killing me, to the point where it wakes me in the middle of the night if I move the wrong way. In addition, I have seriously decreased range of motion and serious weakness. I can't even lift a bottle of juice or pitcher of water. The pain extends down into my arm and my wrist is also swollen and extremely painful and doesn't move right either. I have taken to wearing a brace on my wrist so I can type at work. My shoulder feels like it is being pulled out when I move it forward or up and if I sleep on my back and it falls back, I have to literally grab my right arm with my left hand to make it move and it hurts so bad it takes my breath away.

When I spoke to the rheumy about it last week at my check up, he said it isn't joint pain, but the ligament along the front of my shoulder. He said take tylenol and give the plaquenil and mobic another two months to work. Since then, I have lost about half the use of that arm. I have a hard time getting dressed, I can't lift anything, I can't open a can of soda, and I can't grip or grasp anything. I am sooo frustrated.

I don't even know what to do to alleviate the pain at all. Tylenol is not helping. I have a few Vicodin, but I don't want to take them if I don't have to. I have two kids and a full time job. Help!


- peach

09-06-2006, 08:37 AM
Oh Peach I'm sorry your having so much pain. It is frustrating when you feel that your doctors are not listening. Unfortunately the plaquinel does take a couple of months to kick in. I can't remember but do you have any kidney involvement? If you don't you might be able to try 1 or 2 advils every once in a while to see if that helps. It is an anti-inflamm. so it should help with reducing any inflamm. that might be occuring. Check with your doctor first. How is your bloodwork? You're not in a flare are you??

I'm sorry I can't be a whole lot of help right now but I do hope that you start to feel better soon!

~Butterfly :lol:

09-06-2006, 08:49 AM
Do not ever think that you are complaining here. We are here just so that you can voice your concerns and questions and hopefully get some answers. That IS NOT complaining!!

There are several reasons that you may be expereincing muscle pain and weakness.
Here are a few:
Dermatomyositis - (another auto-immune disease that we Lupus sufferers seem to get). The major symptom is muscle weakness, usually affecting the muscles that are closest to the trunk of the body and accompanied by a skin rash. Eventually, people have difficulty rising from a sitting position, climbing stairs, lifting objects, or reaching overhead. Occasionally, the muscles ache and are tender to the touch. Affected individuals may also feel fatigue and discomfort and experience weight loss or a low-grade fever.
Prescribing a steroid drug, such as prednisone, is usually the first line of treatment for Dermatomyositis. Immunosuppressants, such as azathioprine and methotrexate, may help those for whom prednisone is ineffective. Further treatment with intravenous immunoglobulin has shown to be effective and safe. Physical therapy is usually recommended to preserve muscle function and prevent muscle wasting.

Fibromyalgia: A widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments, and tendons the soft fibrous tissues in the body. Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, and it shows up in people of all ages. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively. Sleep disturbances are also common symptoms of Fibromyalgia.
Treatment usually includes something to assist you in sleeping as well as Muscle relaxants, anti-epileptics (such as Neurontin and Lyrica) and other drug categories may be prescribed.

Kidney Involvment: Muscle weakness can also indicate kidney involvment with your Lupus. Lupus kidney disease can cause water build up in the body, with swollen ankles, or puffy face and hands as well as fatigue and muscle weakness.

You may also be showing signs of some of the other connective tissue diseases or overlap diseases with Lupus:
The connective tissue diseases are a family of closely related disorders to Lupus. They include:
rheumatoid arthritis (RA)
systemic lupus erythematosus (SLE or lupus)
polymyositis-dermatomyositis (PM-DM)
systemic sclerosis (SSc or scleroderma)
Sjogren's syndrome (SS)
various forms of vasculitis.
Here is a web-site that explains these diseases:

I hope that this has been a little helpful to you.
Do not let your doctors dismiss you or these symptoms. INSIST that you be taken seriously and that your doctor's test you to find out exactly what is causing the muscle weakness and pain because it could be something that needs immediate attention.

Best Of Luck

09-06-2006, 09:21 AM
Complain away! It always helps me to (eventually) get it out. I have a bad habit of keeping it all inside and then exploding all at once.
Have you had an xray or mri of your shoulder/arm done? If not I'd ask for one. My left shoulder goes through these periods (and every now and then my right one as well, only not as severe) where I have to wear a sling cause any movement sends extreme pain down my arm, and I keep dropping stuff. Finally had an MRI and my rotator cuff has collapsed due to arthritis and it was extremely swollen in there but yet I am only 31 and don't have RA or anything, just lupus and fibro (plus some others but nothing that would affect joints). So I'd definitely ask for further testing. {{HUG}} Hope you feel better.

09-06-2006, 01:16 PM
First of all thank you for all of your responses. And thanks for all the great information. I will definitely be looking into that information.

I actually did have an MRI done of that shoulder, about 9 months ago, after I fell down stairs. At that point, before they knew about the Lupus, they said I had tendinitis and that it would get better, and it did, until lately. Even then, after I fell, it didn't feel as bad as it does now!

I don't have kidney involvement unless something changes in the bloodwork I had done today. My RA factor has been both negative and positive alternately over the past six months. The last two sets of bloodwork I had done showed a high sed rate and I have been having all over aches and pains, fatigue, grumpiness, extreme photosensitivity, rashes on my face and arms, on and off low grade fevers, sore throats, mouth sores, chest pains, and general blecchhh. The shoulder pain, left hip pain and feeling like there is no padding in my heels when I walk are all new, but I think I would say that I am in a "flare" phase. I still go to work my regular 10 hours a day, four days a week, but I would say that I call in sick at least once every three weeks. And yes, the mornings are definitely the worst.

I have been taking Plaquenil, Mobic and Trazodone since I was diagnosed in late June. I also take Topamax (an anti-epileptic) for migraines and Zantac. I think I will try the occasional advil, but I haven't been because anti-inflammatory is what the Mobic is supposed to be doing and I am apparently on the max dosage.

I guess I am just tired and sick of feeling tired and sick, literally! I was hoping to break the cycle with the medications, because my husband is going to Iraq for seven months at the end of the year and I need to be able to manage the house and the cars, the kids, the bills, the job etc....and right now it is a struggle just to get out of bed.

Oh, last but not least, get this. The doctor that wagged his finger at me and told me very seriously one week ago that I have "mild" Lupus and that I shouldn't be getting so excited about it and I shouldn't be joining support groups....well he gave me a medical report this morning to take to the Navy doctors. There is a spot to list my diagnosis and then a set of check boxes that say "mild", "moderate", and "severe". He checked "moderate". I don't get him at all.

- Peach

09-06-2006, 06:47 PM
Hello Peach,

Boy do I understand your predicament! Being an Army wife myself, I understand how hard it is to try to care for two children with your husband gone. Mine hasn't been deployed yet, but I went through four months before I was diagnosed in horrible pain with my husband in basic and job training. Life is never easy.
About the joint pain. I have had the same shoulder pain. It was so bad that I, like you, couldn't get dressed. I couldn't sleep for longer than a few minutes without having to change positions. I found that it helped to sleep with my shoulder slightly propped up by a pillow. And the problem I have the most is with my hands. They get so bad sometimes that I can't do anything: change diapers, open bottles, push buttons. I scream in pain if my kids accidently knock my hands. The only thing that seems to help is to up my dose of prednisone. And the effects are pretty immediate. Even upping it 2.5 mg makes a drastic difference for me in just a few hours.
I'm so sorry you are struggling. I hope that you get better before your husband leaves. But be careful not to overdo it, stress is a power trigger. If you ever want to complain about being a military wife with Lupus, I'm all ears! :D
Good luck and hope this helps!

09-06-2006, 07:20 PM
Hi Peach:

I'm sorry you are having such a tough time right now and your presant meds appear just not to be doing it for you. I find myself in that position far to often lately and wanted to share with you what I do to help myself in that position. I have suffered with similar problems for almost 20 years now. It probably would be wise to limit the use of your arm, hand as much as possible (for instance try and use the other arm, don't pick up the kids or vaccum etc.) if at all possible. My best friend is ice packs when I get in that kind of condition. If you ice your shoulder, hand, arm etc. 2 - 3 times per day you will find that it helps with the swelling and the pain. I know it is hard to limit use and take the time to ice but I am sure it will help. It sounds like you have gotten a real flare up in those ligaments and tendons and it takes time for them to settle. Also, as some other poster mentioned, use a pillow at night to gently lay your arm and hand on and it will take the pressure off your shoulder. I could not live without my body pillow. I think it gets more night time cuddling than my husband, in fact I refer to it as my second husband and have given it a name.

You can make your own ice packs by adding:

1 cup rubbing alcohol
3 cups water
put in a gallon size baggie (zip lock heavy duty & double bag)
freeze - (will not turn hard like pure water)

I keep 4 in the freezer at all times.

Hope this helps.


09-09-2006, 03:51 PM
Thank you beautifulbeluga for the great tip about the ice packs. I made four of them for my freezer and they have worked out great. I have been using them for my shoulder, my wrists and my heel. I think I might make a couple small ones to take to work too. They are great and work so much better than the commercial ones and better than frozen peas!

I have been trying to limit my arm use too, but its hard when I work at a computer 9 hours a day.

Thanks again to all of you. I hope you are all doing well.

- Peach