Let's Talk Pain....and what you do.

[Northernelf]

I am still in that grey area - I receive immunoglobulin after three pneumonias (3 years now), have been told I have fibro as my bloodwork is clear, and am being investigated for Sjogrens because my neck lymph nodes are swollen and along with my parotids are painful (last four months or so). Dye stains show my eyes are quite dry & and my mouth is dry as well, more so than ever.

Anyway, the only drug I was on was amitriptyline for limb tingling (peripheral neuropathy I guess) and to help me sleep / stay asleep. I quit. For a week I haven't been taking anything except the occasional tylenol for sinus pain / headache. My joint & muscle pain has shot up - I just got out of bed after over 11 hours (multiple wake ups)...definitely a record for me ! Not much real sleep though, lots of pain. Some tingling in my limbs but not that much.

I have an appointment with my GP on the 17th...where I will schedule a lip biopsy. My GP is really just a prescriber and I have turned down lots of things (all sorts of fibro treatments after I tried one & felt worse, more prednisone, etc.). However, I want to come up with a plan and figure out what works best for me...winter is hard for me, cold kills me, we already have snow on the ground and the highs are around freezing...I am suffering !!!

So - my question to you folks - what meds work for you

For pain ?

For inflammation (my neck lymph nodes had eased up a bit but last two days they are back in full force, my jaw hurts)

FWIW, I'm not going to go in & ask for what people say, I want to go in informed & do some research on my own before my appointment. I already have a pretty clean diet and get regular exercise - it helps joints and pain to some extent and helps my mood for sure.

[irish]

I think it would be wise for you to research immune deficiencies that can accompany autoimmume disseases. I was diagnosed with Sjogrens in 2003 after 40 years of illness. In 2006 I was diagnosed with myasthenia gravis, Hashimotos and severe t-cell deficiency plus another cell deficiency that can make one prone to infections. I had so many infections for over 20+ years prior to all these diagnoses. No one paid any attention to me except to give me heck for coming in with so many infections.

My infections got worse over the years until MRSA and other infections were a real problem. I have been on IVIG for 10 years and it took quite a few years for this therapy to decrease my bodies infections. I was put on the IVIG for the myasthenia gravis (autoimmune neurological disease) but it also is the treatment for shortage of cells that help fight off infections.

I can't say that the IVIG has done a lot for the Sjogrens but it may have helped to keep it from getting worse. I still have a lot of problems with pains in muscles and lots of problems with my tendons in spite of being on the IVIG and the prednisone. The Plaquenil is a good place to start for Sjogrens as it is the first drug of choice for this disease. It helps with the fatigue and body aches and inflammation. I was on it for about 5-6 years but developed such bad stomach issues and found out that my stomach improved when I went off the Plaquenil.

You might find that an antidepressant from the SSRI grouping might help with the sleep and pain. It may cause some dryness but many people think the amitriptyline is worse when it comes to the dryness. The SSRIs can also help with the neuro pain with probably less dryness. The amitriptyline is one of the older antidepressants used for neurological pain. The SSRIs can also help with some of the fibromyalgia issues. One of the common SSRI drugs used is Zoloft. Many people have good luck with this. Ask your doc, or better yet, do research on this. Be sure to not believe everything you read when doing any research.

If your lip biopsy is negative make sure to find a doctor who understands that there is such a thing as seronegative Sjogrens - and seronegative autoimmune diseases in general. The docs should be treating your symptoms anyway so that you are not suffering so much. The Restasis is the eye drop that helps with the eye dryness. There is a new drug just introduced for eye dryness that my optometrist offered me to try, It is cheaper right now but if it takes off my doc feels it will shoot up in price. Warm compresses to the parotids along with gentle massage helps to keep them from plugging up so with the thick mucus. Also Salogen or Exovac are drugs that are given to stimulate the salivary gland secretions with pretty good results.

Hopefully you can get some help with your symptoms so that you feels better and sleep better. Sleep disorders with Sjogrens and other autoimmune diseases are very, very common. Good luck. Irish

[Jasper]

"have been told I have fibro as my bloodwork is clear, "
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I would not pay much heed to the diagnosis of Fibromyalgia, especially if they made that diagnosis because your blood work is clear. Doctors frequently (and incorrectly) make a diagnosis of Fibromyalgia when they don't know what the problem is and have no interest in finding out what the problem is.

Only 50-60% of people with Sjogren's Disease have positive blood work for Sjogren's antibodies (sero-positive). There are many, many people with Sjogren's Disease who have no antibodies to Sjogren's but they still have the disease. This is called sero-negative Sjogren's Disease.

A lip biopsy (minor salivary gland biopsy) is the gold standard for diagnosing Sjogren's Disease, although some people also have negative lip biopsies. Just be sure that the biopsy is done by an ENT or oral surgeon who has a lot of experience doing the biopsies.

Your eye and mouth dryness symptoms and your swollen lymph nodes and parotids point to Sjogrens' So do your other symptoms of peripheral neuropathy and joint pains,

It would be advisable to see a Rhuematologist who is experienced in treating Sjogren's Disease. He/she could bnail down the diagnosis and start treatment. He/she will also refer you to an ENT for your swollen lymph nodes and parotids. Sjogren's can cause lymphoma and a good Rheumatologist is going to follow-up and refer you for further examination of your swollen lymph nodes and parotids. He/she may want a biopsy. Treatment is very successful if Lymphoma is diagnosed.

You may also want to see a Neurologist for the peripheral neuropathy.

I use CoQ10 100 mg a day which has increased my saliva production. ( (super ubiquinol CoQ10 ..... Life Extensions brand) )

I use Restasis for my eyes. Nothing else worked. Restasis keeps my eyes well lubricated and keeps the inflammation down. Prescription.

I use Curcumin as an anti-inflammatory. I also take Omega 3s and a lot of Vitamins. The meds and supplements I take are in my signature line.

I take 400 mg of Magnesium Glycinate in the evening which helps with sleeping and muscle pain.

I also take Vitamin D. Low Vitamin D can cause a lot of problems, fatigue, pain, increased incidence of Lymphoma in Sjogren's, and much more. If your doctor has no already checked your Vitamin D level, I would ask him to check it. It should be at least 40 and preferably higher.

I have turned down a lot of prescription meds for my peripheral neuropathy and joint pain. I felt they would worsen a lot of my symptoms.

I take some supplements which may be helping the joint pain and neuropathy pain (Curcumin, Boswella, Bio-collagen, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Omega 3s).

I take N Acetyl L Cysteine  to loosen up mucous (sinus secretions). I also do saline nasal irrigation, which help.

The other medication I take is Rituximab infusions every 6 months. Rituximab has helped me the most of anything but you need a diagnosis and a good Rheumatologist who will order the drugs for you.

Wishing you the best going forward.

[SjoGirl]

First so sorry, I was experiencing pain every day for the middle part of this year and it was awful.

Second, I found it important to determine what type of pain it is, e.g., what is the cause. Inflammatory pain responds to different drugs than nerve pain does.

I was taking Tamadol and/or Tylenol for pain with really not much relief. Once I was put on Gabapentin, which is for nerve pain, I experienced tremendous relief (and rarely have to take Tramadol or Tylenol).

My nerve pain is most likely from discs in my neck and back. Rheumy is considering ankylosing spondylitis as a possibility.

Hope this helps.

[warmwaters]

The question of "what type of pain" is important.

I have tried MANY things, and have been unable to tolerate many. Most antidepressants (which can help with pain) are bad for me, and so far all the drugs used for neuropathy (gabapetin, etc) are also intolerable.

I currently use mobic for muscle/joint pain. It's basically anti-inflammatory, like ibuprofen
I use low dose naltrexone for muscular pain relief.

I manage swollen paratoid and lymph with massage and hot compresses. Antibiotics if I have an infection.

I also use hot baths and showers for pain relief.

I occasionally use hydrocodone for severe back/sciatic/neuropathy pain.  That's on a case by case basis. I tend to limit use to when I'm in a lot of pain.

[Deb 27]

warm waters, do you go off the LDN when you have to take pain meds? How long do you wait?

[warmwaters]

I just don't use the LDN on the days on I use the hydrocodone.