Hi All!
I'm new to this Forum thing so hopefully I'm doing it correctly. I hope I don't get too long here, I'll try to keep it short. (you can just read the last 3 paragraphs to get the just of my issues)
I started having issues starting approximately two years ago. It started as just a small issue so I went to an Urgent Care because I didn't have a GP. Anyway one thing lead to another and I had a blood draw. The doctor informed me to get a GP because he was showing that I was positive for RA factor test that he had checked. He said it was an Autoimmune disorder, either Lupus or RA. I also have been diagnosed with Raynaud's Syndrome.
Anyway after several additional blood draws and tests my new GP did say yes positive RA. He messed around with Naproxen at first with no help with pain, only now my pain was increasing and I could stand or walk for extended periods of time. My feet and ankles would swell up terribly, and I was getting a ache feeling up further in my legs and hips. My hands also swell up its difficult to make a fist because of the pain, stiffness and the swelling.
My Doctor tried Methotrexate with the gradual increase with no help. Finally after three months of me seeing him every couple of weeks he recommended a Rheumatologist.
The first time my Rheumatologist seen me he said you don't have RA... He did have me stop the Methotrexate. He ordered several more tests for Lupus, and other Autoimmune, and finally diagnosed me with Sjogrens. However I don't suffer from the typical dry eyes and mucus problems. My eyes might be a little dry, but nothing super bad.
My Rheumatologist continued to run more tests about every time I seen him. He also discovered that I had so sort of muscle disorder going on because of my elevated Adolase Levels. He tested my Adolase on four separate occasions and it came back elevated three of those times. The last time it was in the normal range but I had been on Prednisone for three days prior to him testing that time. I also was experiencing more fatigue and weakness. My swollen feet had somewhat subsided but now it had transitioned to a prickly numb feeling. It almost feels like I'm wearing downhill ski boots 24-7. The Rhuemy noticed that I had a foot drop, that I never even realized that I had. He did some strength tests on my feet and said that I had a pinched nerve in my back. He ordered a MRI and it did come back with some rather minor bulging and tears on my lower back, but nothing requiring surgery. He then ordered a EMG and it did show some Neuropathy (Nerve Damage). He prescribed a 5 day dose of higher Mg of Predisone I believe it was 400 Mg a day. Anyway that was almost like a miracle drug. It took care of probably 60 to 70% of my aches and pains. But of course he would not give me any more because of adverse side effects.
I have since had a ABI test because of great pain in my shins with walking distances to try to stay in shape. The pain hits after about a mile and then subsides if I stop for just a few minutes. I can than walk for my 3-4 miles like I like too. Anyway Doc thought it might be a vein issue, it was negative.
So this is where I'm at. I have been diagnosed with Sjogrens, Raynaud's, I have had minor bouts of Peripheral Arterial Occlusive disease. (My feet and legs turn blue) I have Neuropathy in my legs. I also have Myopathy (Muscle Disease) my Rhuemy says its a very odd type, that I may have to go to University of Michigan, or the Mayo Clinic for a real diagnosis. His thoughts are either a form of MS or Muscular Dystrophy. My thoughts are its all being caused by my Sjogrens. I am going to a Pain Clinic tomorrow for a Epidural injection for my Neuropathy. So ultimately they are just going to mask the cause. They have also prescribed Gabapentin and Nortriptylin for my nerve issues. with my side effects of weakness, no upper body strength, and extreme fatigue when I exert myself in the least. Nurse told me to reduce my dose back to twice a day instead of three times a day.
I am also thinking that I need to get a referral to see a Neurologist.
I am currently unemployed, I have been unable to work because of my inability to stand for extended periods, not to mention the brain fog that I seem to be experiencing. So I'm also struggling with the disability option.

Any advise or insight would be greatly appreciated.
Thanks!
MichBlueEagle

Hi MichBlueEagle! I'm sorry to hear you are struggling with multiple health issues at the same time...it makes what is already a hard situation so much more difficult.

I know when I first got sick, the same thing happened to me...testing at GP level indicated 'arthritis' of some type, so they always assume RA or Lupus...I was told probably lupus. Then the Rx for naproxen for pain (which of course doesn't work on this level of pain.)

Then the visits to the rheumatologist begin...hopefully with a correct dx right off the bat...sometimes not--in my case, not. The search for medication to help with the pain, the inevitable prednisone shots or pills to help with pain and inflammation, which are only a temporary respite...usually on to Plaquenil, which works for Sjogren's patients, though they don't quite know why or how.

I think we all go through these stages just like clockwork. Unfortunately, there is no set answer or solution for us. I've had Sjogren's for 23 years now and am still struggling with it.

You are doing all the right things--it just takes time, unfortunately. I'm glad you're off the methotextrate...that is some strong stuff and should be used as a last resort, not a first treatment.

Your first priority is to get your pain under control...it's hard to get better when you are in that much pain. Is the Gabapentin/Nortriptyline combo working for you? When my PN (neuropathy) developed, I was given Cymbalta for the pain, and it worked very well, though I had to discontinue it due to side effects. It's gone generic now, so you might be able to get it cheap.

Plaquenil is the drug of choice for treating Sjogren's..most of us are prescribed it. It is generic and cheap and has very few side effects..I never experienced any, other than the increased photosensitivity.

Sjogren's is diagnosed several ways...my doctor just takes my blood and looks for elevated SS #s, but some are dx'd with a biopsy (lip I believe-I've never had that test). I've noticed that sometimes my eyes are only slightly dry, sometimes horridly dry...it kinda goes through cycles with me, and my SS # is still kinda high.

The best thing to do while waiting for your doctors to diagnosis your other symptoms is to treat yourself with supplements for inflammation. Turmeric, ginger, bromelain, quercitin--all of these are fairly cheap supplements which help your body fight inflammation, which will hopefully help lower the level of pain. I know that when I wanted to quit the prednisone shots, I used these and others to totally do away the pain so I didn't need them any more. Just make sure the supplements aren't contraindicated with your current medications...you can ask your pharmacist or your doctor to make sure.

As for filing for SSDI, you definitely need to begin the process ASAP. At 49, you are highly likely to be denied the first time. I was 49 when I applied, and they said I could still do 'some' type of work, though they acknowledged I could no longer do the work I went to college to train for and that I had been doing for 25 years. That changed when I turned 50--the criteria is different when you enter that age bracket, and made it easier for me to be approved on appeal.

I do feel for you. I didn't have insurance for a number of years, and know very well what an uphill battle you face affording care and medication when your resources are limited.

Wow!! Thanks for taking the time for your in-depth insight!

I've only taken the Gabapentin/Nortriptyline combo for a couple of weeks. I am currently having issues with side effects. They had me reduce the dosage slightly. I haven't seen any help yet, although they told me it would take about three weeks to notice any improvement.

Did you go the Epidural route too with your neuropathy?

I have not been on Plaquenil, or Cymbalta yet. My pain wasn't bad initially but it has slowly ramped up over the last year.

I will check out some of those supplements that you suggested.

Thank You Again!!

You're welcome. No, I haven't tried any epidurals. The Cymbalta worked very well for the neuropathy. After I discontinued that med, I took Topamax 50 mg for the pain and found it worked almost as well.

I chose to take the topamax because I didn't like the side effect profile of either lyrica or gabapentin. Topamax doesn't increase your weight-if anything, people tend to lose, though I have not, so I consider it weight neutral. The only side effect I noticed about it was that my fingertips tingled, but not painfully. It also dried out my hair-some people report it makes their hair fall out, but that must be at higher doses. It does make you sleepy, but I used it as a sleep aid, so it worked out great for me.

I recently discontinued the topamax when I discovered that the Dextromethorphan I had been taking for my back pain also relieved the neuropathy pain. I take 120 mg of DM per day. It has really been a godsend. I'm relatively pain free for the first time in a long time.

I also started Low Dose Naltrexone in the past month and I think it is helping with the muscle pain. I was in a full blown fibromyalgia flare when I started it, and it dissolved the pain almost immediately, with no return. You might consider adding that to your medication regimen...it has been found to be extremely effective with MS.

Have you noticed if the Nortriptyline is giving you any energy? That is one thing I have never been able to find a remedy for--the exhaustion that accompanies Sjogren's.

Hi Breia Lee!!

I had my first Epidural this morning, I think my back feels a little better, (we will see how it feels tomorrow) although my back pain was never really a super big deal with me as I've had on and off back problems for years. I don't notice anything different yet in my main problem of my feet and ankles. Maybe it will improve... they said I may not notice improvement until the second injection. Like I mentioned before, I'm just not sure how I feel about just masking the problem... Or maybe I just realized that's all I can do is mask it? I guess I've bee thinking one day all this will just be over, kinda like a magical cure..... -Ah No- wake up!!-

Is that really pretty much it? hmmmm Why did I honestly believe that. Guess I just had a AH HA! moment... Geeze

I really have been quite tolerant of my pain ever since this started, but it has been a gradual thing. I do think I need to start pushing for more pain meds as it has gotten worse. So yeah I will start looking at those meds that your talking about.

The Nortriptyline is not giving me any energy that's for sure!! If anything its made things way worse! I now have extreme weakness in my upper body, my arms are tingely from my inner elbow crease to my thumb crease between my thumb and finger. I now have no endurance, 5 mins of doing anything physically, and I cant lift my arms and I'm out of breath. I also feel antsy when I stand up, maybe more like a jittery, and I cant stand in one place for a long time without a urge to sit down. This has all started about two weeks of starting the Gabapentin/Nortriptyline combo. The nurse did have me cut back the dosage, But I don't think its helps these new symptom's much. Maybe its not a cause of the meds at all, but the nurse seemed to think so.

I did talk to a lawyer today, he reviewed my SSDI and does want to meet with me, so I think he thinks that I might have a case. I was rejected on my initial case about 8 months ago.

Anyway Thanks again- Breia Lee!

Terry