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khumsey

New member
Joined
Aug 15, 2013
Messages
5
Diagnosis
01/2003
Country
US
State
floriida
Hi All,
I wanted to share a few things with the forum that I hope will help even 1 person. This is truly a frustrating condition for patients and doctors with very little relief and no magic pill.

First, a few things that have helped the pain, meds don't seem to work on me at least. Getting into the pool has worked the best, everyday if possible. keep moving throughout the day and the pain seems to hold off until you stop of course. I also use a Tens machine and just started with Lidocaine Patches, also a temp relief. Trigger point shots work great but you can't have them too much and in only a few spots at a time.

Second, it is possible to get Disability without years of fighting. You must have extensive records over a decent length of time and show that you have tried to work. The more thorough and detailed you complete the forms, the better. I was diagnosed over 10 years ago but my condition has just advanced beyond my control. I worked on and off and tried lots of treatments and doctors, luckily I kept all my records and provided a detailed summary of my condition and impact on my daily life.

Diet does help a bit, I just started a daily homemade green juice using my cheap blender and i feel the surge immediately of energy. (I also have CFS). I was not up to buying some expensive machine and found out that I don't have to, I use veggies and fruit. I also try and get more fish and make healthy choices but when your stuck at home alot, its hard to behave. At least the green juice is helping

One more thing, after seeing lost of doctors over the years, only recently did 2 of them mention getting a sleep test for sleep apnea, this is definitely overlooked and can cause pain as well as fatigue. I wish I knew this years ago.....

that's it for now, I hope we all feel better soon!
 
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Madeline

New member
Joined
Jul 29, 2014
Messages
8
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
NJ
Prior to being diagnosed with fibro, I was seeing a physiatrist for severe neck, shoulder arm and hand pain and numbness, and numbness and tingling in lower legs, hands and feet. Also, nasty pains in my hips, elbows, lower back, knees, neck and shoulders. MRI confirmed cervical stenosis and radiculopathy. She prescribed a TENS unit, and also Lidocaine and Flector patches, as well as oral baclofen and neurontin (gabapentin) - titrated up to 1200 mg. Was prescribed two different cervial collar types. She administered trigger point injections (non-steroidal), and also XEOMIN (incobotulinumtoxinA) injections. Baclofen wasn't doing anything, and I developed severe diarrhea from the gabapentin (it has lactose in it, and I'm lactose-intolerant). We then transitioned to Zanaflex (4 mg double-scored tab), and Gralise (which is a time-release gabapentin taken in 300 to 600 mg tablets). The trigger point injections lasted a couple of days, the XEOMIN lasted about two weeks. Also had several courses of physical therapy. I use moist heat and a Thercane to massage the muscle spasms and knots.

I also have neuropathy in my lower legs which was diagnosed by my neurologist after an exam, assessment and EMG.

Long story short, due to changes in insurance, I had to find another physiatrist who then referred me to a rheumotologist. I began seeing her in March of this year, and in May was diagnosed with fibro. We tried a combination of Amrix and Lodine to break the pain cycle. It worked . . . except a few days after taking the Lodine, I developed an allergic reaction. So I was just on Amrix, which helped some, but constipated me terribly - and I have a very high fiber diet! Since I have IBS, she took me off it. I just started Savella last night, and will very gradually titrate up. She likes to do it slower than recommended so your body has a good period to adjust to it. She also prescribed prescription-strength naproxen (375 mg) to be taken as needed. I'm also on lisinopril (2.5 mg) due to med-induced high blood pressure. My pressure is normal.

I am able to work, and thankful my job is within a 15 minute driving distance. It's a small company and my job stress level is minimal. My prior job was a huge stress-inducer, plus the commute was 50 minutes each way.

My D levels were low, so I'm on 3003 IU of D, plus magnesium and calcium per day. I have a very healthy diet that includes a lot of veggies, fruits, fish and chicken. We might have beef one to two times a month.

Had a mini flare-up earlier this week, and am just tolerating the pain. Can't wait until the Savella kicks in, and I might try an RX-strength naproxen when I have dinner. I did not sleep at all last night. But I've been worse. I am thankful for the days my pain is minimal or tolerable, and find the TENS unit seems to help with the shoulder, neck and upper back pain.

At 61, I'm not ready to go on disability, although I'd probably qualify. As long as I have my handicapped placard on my car and can get around, I'd like to continue working. It makes me feel better. I was unemployed for 16 months starting in late October 2012, and started working again February of this year. My outlook is much better when I have someplace to be each day . . . plus the money helps! We were down to our last $$$$, but thankfully didn't have to touch our retirement funds.

I like your green juice! I'd rather make it myself than go for the commercially marketed stuff!
 

khumsey

New member
Joined
Aug 15, 2013
Messages
5
Diagnosis
01/2003
Country
US
State
floriida
Madeline,
thanks for sharing your treatments, I have tried a few of those meds but never heard of some so I will look into those. My pain has gotten so bad in the past year, the only diagnosis so far is that my fibro has advanced to every part like you including a partial crippling in my hands.

after leaving 3 jobs to stay home and finance my own disability, I finally took my last option, since, I never felt this bad and it appeared that this would not be an easy recovery to manage. I am thankful I did that because it gives me time to work on finding relief solutions and relieves the stress about the money. I am working part-time from home but so far can only get to about 10 hours/week before I hit the wall with my CFS.

I wish you all the best and thanks for sharing your story,
Karen
 
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