View Full Version : Hi. I'm new - just wondering about something

03-09-2007, 09:36 AM
Hi Everyone. I'm 38 and have had lupus since I was 20. I have two problems right now that I want to ask about.

1. The last few years I've developed a lot of neck problems - right in the back at the base. Sometimes it completely locks up and I can't even bear the weight of my head but most often, it's just very painful and affects my movement a lot. I get a lot of nerve involvement - it feels like jumper cables are hooked on me. I know I have stenosis pinching the nerves but it's getting worse and my husband says I'm getting a hump! Oh my heck. I've tried acupuncture - no way am I doing that again. I've tried massage - it helps for a very short time just cuz it relaxes the muscles. I know chiropractic can help but that would be like lifelong and I can't afford that. Does anyone else have anything like this and any suggestions for help? I do the ice and hot alternating but this is really starting to affect my life. I feel anti-social because it's hard to turn my head and be all friendly.

2. My longest lasting problem is chest pain. Mostly on the left side over my heart. I had pericarditis years ago but it's not that. I think it's musculoskeletal because it can just stab me if I barely move. Other times it will hurt even if I'm not moving. Sometimes it just takes my breath away - but mostly it's a tightness that just exhausts me. I've been told it's scar tissue from my pleurisy or costochondritis but antiinflammatories don't seem to hit it. Any ideas? It really exhausts me to have chest pain all the time. I told my husband if I ever have a heart attack I'll just die because I won't know it's the real thing.

Some people say lupus doesn't affect neck and spine but whatever. I'm just wondering if this is a very common lupus thing and if anyone has any ideas. I know stress doesn't help - I have 3 kids plus 3 little foster girls and I've been crying wondering if I can keep the foster girls or not. I just get so tired. They will probably need adopted and we love them but I'm not sure if I can do it. So that's some stress....

Thanks to all of you who take moments to help others. I will try to help others too.


03-12-2007, 01:42 PM
Hi Megara;
I apologize for taking so long to respond to your questions :?
First, let me say that it is not uncommon for two medical events to be both true, yet not related to one another. This means that each medical event has a defined cause and that they are occurring together. However, they are in fact independent conditions. It has been generally accepted that Lupus does not cause neck and back pain. But, remember that Lupus is an immune disease that can attack many internal organs and tissues. The classic parts of the skeleton that can be affected by the inflammation of lupus are the peripheral joints: the joints away from the spine, such as the small joints of the hands and feet, the wrists, knees, elbows, ankles, and shoulders. Lupus commonly causes arthritis in these joints. The spine is generally spared from the inflammation of lupus.
But, Lupus can cause neck and back pain because the muscles can become inflamed by lupus. Furthermore, the muscle pain syndrome called fibromyalgia causes pain in these areas and this condition is commonly associated with lupus. Also, if you are taking any cortisone medications, which are frequently needed for lupus, these medications can weaken the bones of the spine, leading to breakage (fractures) of vertebrae. If you are taking corticosteroids, these can often cause a lump on the back of your neck. Also, there is a rare complication of lupus that involves inflammation of the spinal cord, called transverse myelitis, whichcan be associated with back and neck pain.
Finally, neck and back pain is most frequently a result of an injury or wear and tear, a degenerative change with aging. This is true in the general population and is also true for patients with lupus. However, there are many causes of pains in these areas, ranging from organ disease (such as kidney problems and others) to disc herniations. So, there are many reasons and ways that your neck and back pain can be associated with Lupus. I would suggest that you consult with your doctor to determine exactly what the association might be and how to treat it!
You say that you are sure that your chest pains are not due to heart involvement. Just as there are many reasons that you may experience neck and back pain associated with Lupus, there are also many reasons for chest pain associated with Lupus. Your pain could be a result of Lung involvement and/or heart involvement. Lung invovlement could be pleuritis, pleural effusion, Lupus pneumonitis, Chronic diffuse interstitial lung disease, Pulmonary hypertension, Pulmonary emboli, or Pulmonary hemorrhage.
pleuritis (pleurisy) is the most common pulmonary (lung) manifestation. The symptoms of pleuritis are: severe, often sharp, stabbing pain that may be pinpointed to a specific area or areas of the chest. Sometimes the pain is made worse by taking a deep breath, coughing, sneezing, or laughing. Pleural effusion occurs when an excessive amount of fluid builds up in the pleural space between the lung and the chest wall. This is called a pleural effusion and occurs less often then pleuritis.
Lupus pneumonitis is inflammation within the lung tissue. Infection is the most common cause of pneumonitis in people with lupus. Bacteria, virus, or fungi are organisms that can cause infection in the lung. Sometimes pneumonitis may occur without infection and is then called non-infectious pneumonitis. The symptoms of Lupus pneumonitis are: fever, chest pain,
shortness of breath, and cough.
Chronic diffuse interstitial lung disease is relatively uncommon in people with SLE. Chronic interstitial lung disease scars the lung. This scarred tissue acts as a barrier to the oxygen that normally moves easily from the lung into the blood. The symptoms are: gradual onset of a chronic, dry cough, chest pains similar to those in pleurisy, difficulty breathing during physical activity.
Pulmonary Hypertension is high blood pressure in the blood vessels within the lung. If severe, this can be life-threatening, and there tends to be little chance for improvement.
Pulmonary emboli are blood clots that block the pulmonary arteries.
Pulmonary hemorrhage, or bleeding into the lung, is a rare but potentially fatal complication of SLE.
Again, until you are your doctor can discover the exact cause of your chest pain, it will be difficult to give you any suggestions on what you can do. There are treatments for each condition that I've listed above and there are several reasons that your pain could still be caused by heart involvement. I will just give you some of the reasons: Pericarditis: inflammation of the lining of the heart - Myocarditis: inflammation of the tissue of the heart - Coronary vasculitis: inflammation of blood vessels in the heart.
I hope that this information has been helpful to you. Please let me know if you need anything further!!
Peace and Blessings

03-12-2007, 02:49 PM
Thanks so much for taking the time to help me. I appreciate it a lot.

03-14-2007, 08:19 AM
Hi Megara!

Welcome to the Forum! :D

Please just remember that anytime you need advice, support, information or just to vent or chat, we're all here for you! :D

Your chest pain could also be Costochondritis, which I suffer from. Do you have Fibromyalgia? Costochondritis is often linked to Fibromyalgia. Here is a wonderful link with information about Costochondritis and the link to Fibromyalgia, which was supplied by Marycain a short while ago:


Keep well! :)

03-19-2007, 03:16 PM
I'm not nearly so knowledgable as many others here, but I will add that your symptoms sound a bit like my mother (lupus and FM). She recently had a cortisone shot to help pain at the base of her neck--she couldn't turn her head. Her rheumie said that it was due to calcium deposits in the muscle that have built up during the years of inflammation. She has a huge knot, or hump, as you described.

03-24-2007, 07:57 AM
Of course you need to see a pysicaltherapist to verify if this is the treatment for you....but I had neck/shoulder problems, and they used an ultra sound wand on me. It feels like nothing when they're doing it. But after a session, I could turn my head again. After three sessions, I was completely fine. it was like magic.

I hope you feel better soon.

03-24-2007, 12:00 PM
I also have only been diagnoised with Lupus only , but I also get really bad neck pains were I feel like I can't hold my head up and also my back is really bad if I clean or something I bend over and I can barley get up the pain is so bad I have to lay down. I ask my Dr about my back and he said my back pain could be just from the way I walk but I don't know about that I just walk with a small limp because of the pain in my hip, well I was just curious on what maybe other people might think... well Thanks