Perfect Storm of Symptoms

This is my first post, and it will be long but please please bear with me.

about 6 years ago my widespread pain started. I had some joint pain but not really too significant. Mainly in my right knee (had a menisectomy in 2000) and chalked it up to after effects of that. I headed to the rheum. and he diagnosed with fibro. I did not start medication at that time. He diagnosed with pressure points

After 2007 and having my daughter via C-section my urinary frequency and urgency increased exponentially. I started taking Vesicare but it didn't work. I also tried Myrbetriq but that didn't work either.

Last year my pain got extremely severe, back pain, joint pain, increased urinary symptoms, worsening IBS, increasing migraines, extreme vertigo. I headed to a rheum again in my new city and he confirmed fibro because my joint movement was fine. He started me on Gabapentin. I have been taking Gabapentin now for almost 8 months.

In October my lower back became excrutiatingly painful. I went to my primary and he said that it was scaroilitis, sent me to physical therapy. I also started with a chiropractor at this time 3 days a week. I completed PT and had some relief but about 4 weeks later it came back with a vengeance. Due to some other problems with GI stuff, I went to the doctor last month and he ordered an Xray for my back to see what was going on, and a CAT scan for the GI stuff. The Xray came back normal, my CAT scan showed Mild degenerative changes of the bones. Bilateral L5 spondylolysis. No significant spondylolisthesis. The primary stated that it looks like arthritis in my L5 region. However his recommendation was to just increase the gabapentin. All my GI stuff came back normal and all blood work came back fine. My SED was an 8

Below are a list of symptoms:
Severe back pain
Worsening neck/cervical spinal pain
Pain in various joints, wrists and fingers (drs say this is carpal tunnel), knee (with significant swelling), toes, hips, and elbows.
Significant and painful popping of joints, and feels like they are grinding
Worsening TMJ
Migraines
Vestibular Migraines
Exhaustion
Severe itchiness despite using prescription lotion, and coconut oil and cool showers/baths
Brain fog
Stiffness in morning in back primarily
Worsening IBS/GI symptoms including occasional blood in stool, and mucous filled bowel movements (negative for Chrons and Colitis)
Severe trigger point pain
Sciatica pain
Clumsiness
Difficulty walking sometimes because I will "miss" a step

I take a mild narcotic almost everyday, 800mg of Gabapentin, use a TENS unit, heat, ice, rest, I do yoga and stretching, vitamin D, multivitamin and an antidepressant. My gut says something else is happening but the doctors chalk everything up to fibro.

Post Edited (plmhp) : 2/7/2018 2:09:48 PM (GMT-7)

Hi, Plmhp, and welcome! Have any of your doctors taken a lot of tests to rule out illnesses that have many of the same symptoms as fibromyalgia...illnesses like lupus and Lyme disease? This is usually how fibro is diagnosed. There is no good test for fibro so they rule out the other possibilities first. According to the American College of Rheumatology, they aren’t using the tender point test for diagnosis because there are variables...mainly how much pressure the doctor exerts. It isn’t the most accurate test. But, if you did have other illnesses ruled out plus a positive for the tender point test, fibro is probably the cause of many of your symptoms.

We can have fibro and other things too. A few years ago my back was really bad...especially my lower back and hips. It was getting worse and worse and I even had raw nerve pain running down the insides of my legs and I needed two canes to walk! I knew fibro isn’t a progressive illness so I headed to a rheumatologist and, after eight vials of blood work and about 25 x-rays plus an extensive family medical history, I was diagnosed with not only fibro (which I knew I had) but also ankylosing spondylitis and Sacroillitis. I had been taking ibuprofen for years, but had stopped it recently, and he said that’s how I had kept it under control. I started the ibuprofen again and was also given a muscle relaxer called Robaxin (methocarbamol) and that has made a significant difference in my pain. I now can walk fine, need no canes, and my back pain is controlled easily with ibuprofen and Tylenol.

I also take vitamin D3 and magnesium malate and I walk daily as my gentle form of exercise. Pacing myself when doing things is a must also. All of this helps me be in control of my pain.

At one point I tried a chiropractor. I too was seeing him three times a week. I would hurt after the treatment and was starting to feel better by the time my next appointment came up. I would go and then hurt again. It was a vicious cycle. Then one day I walked in and shuffled out! I couldn’t lift my feet. It took me a half hour to try to get my slacks on to leave and that was the last time I saw a chiropractor. At least in my case, my back is not out of alignment so I shouldn’t have gone in the first place. The pain was so great that I couldn’t get out of bed and nearly had to call an ambulance. I managed to get up after several tries and ended up sleeping sitting up on my sofa for 1 1/2 years.

But since Robaxin was given to me, I have no problems getting out of bed and doing many things I struggled with before taking it. I take a lot less than prescribed. The script reads two tablets four times a day. I started out with one tablet four times a day and now I’m only needing one tablet twice a day.

Be sure to read Fibro 101...the first thread on the forum. There is good info about fibro in there and you will learn a lot.

I’m looking forward to getting to know you better. Don’t hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Youve got that right! Everything is blamed on fibro. If ankylosing spondylitis is suspected, I’m surprised they haven’t mentioned the new biological medication. It’s supposed to help stop the progression of the illness. Since I have good controls l with ibuprofen (I take three tablets at a time) I declined Remicade infusions. There’s also Humera and other biological medications. With my family history I just don’t think they are a good idea for me. You did say your inflammatory markers were normal so you probably have to rule out AS. It’s an inflammatory illness.

Our tests usually come back fine...like we are the picture of health but don’t question your sanity. Fibro is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization...just to name a few. I was found to have high inflammation markers because I have four autoimmune illnesses. But fibro is not an autoimmune illness and is not an inflammatory illness according to the National Institutes of Health. Because you have the pain but not the positive inflammatory markers, it points to fibro

Many have found that some supplements help better than medication. I see you are taking vitamin D3. Quite a few of us take this. I take 5,500 IU’s a day...that includes the D3 in my calcium supplements and my multiple vitamin. This has helped me with pain. I also take CoQ10. That helps with muscle pain and is very good for the heart. This made a noticeable difference too. Unfortunately, what works for one doesn’t necessarily work for another with fibro. We are all so different! So it’s more a trial and error type thing. Maybe you could start a thread asking what members use for fibro. You should get quite a few ideas that way to try to help yourself.

I know how frustrating it can be. I’ve had fibro for decades and am far better now than I was when I started this journey! Keep a positive outlook too. That really helps! There is a link in Fibro 101 about how to maintain a positive attitude when you suffer from chronic pain. It’s very good.

Sherrine

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