Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
When the pain was very severe in January of 2012 (woke up and barely move my right arm, and the pain was excruciating), I called my chiropractor, who took me in right away. He said it was nerves in my cervical spine, probably my upper thoracic spine, and he gently worked on me with moist heat, gentle massage, ultrasound and stim. After two weeks with very small improvement, he advised that I should see either a neurologist, or a physiatrist, and possibly a orthopedist.
Ive also had chronic, almost debilitating pain in my right hip and knee, and also a very heavy feeling in my right leg since about 1998, which had been getting worse.
So, I first went to one ortho, who took Xrays of my cervical spine and shoulder (since the pain was targeted to my right neck, the shoulder blade which felt like it was on fire, and my shoulder to down my right arm, radiating into my right wrist, hand, palm, thumb and pinky). He referred me to a shoulder ortho, who sent me for MRIs, and then I was prescribed physical therapy, along with an anti-inflammatory.
After not much progress, I was then referred to a rheumotogist, who assessed me, sent me for more films and MRIs; had blood tests done, the result which showed my ANA levels were a bit high, my D levels were low (which I already knew and was taking supplements), were negative for lyme and lupus; and he changed up my physical therapy. After three months with no discernable improvement, he said I should see a neurologist and probably a physiatrist, but continue with the PT.
I next saw a neurologist, and had more blood drawn, and had EMG/nerve conduction study performed on upper and lower extremities. I was diagnosed with neuropathy in my lower extremities not severe but it was there. I also had tingling in both hands and feet, and experienced numbness in the right hand and foot. She prescribed gabapentin (started at 100 mg, and titrated up to 500 mg), and changed my physical therapy. She also mentioned I should probably go see a pain specialist, and consider a nerve block. The EMG was performed in two sessions, and after the follow-up visit where she recommended other specialists, I was scheduled for a follow-up a month after.
Let me say that during this time, no one focused on my hip or knee since the pain in my upper body and arm were extreme, and they wanted to get that under control first.
Four days prior to my follow-up, I woke up debilitated and in excruciating pain, and could not move my right arm at all. When I tried, the pain was exquisitely horrific, almost to the point of passing out. Then Hurricane Sandy hit, and we were without power. Two days later, we were hooked up to a generator so we could have lights and get our furnace putting out heat. The day I went for my follow-up, I was delirious with pain all over and could barely move. My husband was very concerned and wanted to take me to the hospital, but I wanted to see the doctor for the follow-up. I got to the neurologist, she did a quick assessment, then picked up the phone to the nearby hospital, and told them she was sending me over. She told me to go to the emergency room, and would meet me over there in 30 minutes.
There I had just about every single test they could perform, and also had a spinal tap done. Had three different CT scans (head, cervical, and thoracic with and without contrast). They showed the issues with my cervical spine. I also have arthritis. After spending almost 24 hours in the ER, I was released, happy on dilaudid (the drip I was given for the pain), and she prescribed it for me. I was scheduled for a follow-up with her in ten days.
In the meantime, I was let go from my job, and then my insurance changed.
When I went for the follow-up, I was advised that they werent in my network.
I was then referred to a physiatrist.
The physiatrist did a full exam and assessment, sent me for MRIs with a facility that she approved of because they did exactly what she was looking for, and she also directed me to yet another physical therapy group because the PT I was getting wasnt addressing the muscle spasms, muscle tightness, and the pain I was experiencing it was only making it worse. She upped the dosage of gabapentin to 1200 mg, but after I got up to 8, I started having gastric issues because gabapentin in the capsules contains lactose. She switched me over to Gralise, which has no lactose, and is a time release form of gabapentin. She also prescribed Zanaflex as a muscle relaxant, but told me to take it only when I had nowhere to go, or at bedtime, and start out with 1 mg. The stuff knocked me on my butt! She wrote out a prescription for Lidocane patches, Flector patches, and told me how to apply them. She got me two different types of neck braces, and also provided me with a TENS unit, and advised me how to operate it.
Over the course of 12 months, my symptoms diminished due to a combination of getting the right kind of PT and OT, and also because this physiatrist talked to me about posture, how to sit, what types of movements I should do with my body, and to always be conscious of how I was moving it, and to avoid certain types of movements. She also administered non-steroidal trigger point injections with lidocaine, and we tried Xeomin (botox) injections. Trigger point injections worked, and I got relief for about five to eight days. The Xeomin we tried twice, but it wasnt a long-lasting as we had hoped, so we abandoned them.
I was very happy with the progress I was making with her. She treated me for a 12 month period February 2013 to February 201 at which time, I found a job (was unemployed for 16 months), and she was 15 miles to the south of my home, while the new job is 8 miles to the north of my home. She only has office hours M, Tue and Thurs from 8:00 AM to 4:30 PM, so I had to stop seeing her, which greatly upset me, because I had improved so well. Still had pain, but was able to manage it. My fear was that a new job would create a lot of physical demands on me and Id be back in the hospital.
So, I found a new physiatrist in my network. I saw her three times, at which point I had a block performed on my shoulder blade, from which I experienced a slight improvement. On the third visit, she recommended cervical facet joint injections, which I declined yes Im in pain, but I dont want anything, especially steroids, injected that far up in my spinal column so she advised there wasnt much more she could do for me, and referred me to a rheumotologist.
In May of this year, after several tests, I was diagnosed additionally with Fibro, which I never even considered, but my symptoms were classic especially when she did the tender point tests . . . I didnt even KNOW they hurt like hell until she gently pushed them . . . especially my upper extremities, neck, shoulders, elbows and the ones that totally blew me out of the water my hips and knees!!!!! FINALLY! That explained some of the other odd come-and-go pains I got which didnt seem related to other things. I mean, I wasnt happy for the diagnosis, but it explained a lot.
We tried a combination of Lodine and Amrix with which I had great relief for an entire three days until I developed an allergic reaction to the Lodine. I stayed on the Amrix, titrated off the Gralise, and continued with the Zalaflex. I got injections in both hips which helped for a while. She asked me how I felt about physical therapy, and told her I had been on five rounds with five different facilities in the course of two years, and I was done with it. I knew my home program, and did it when I could. We then tried Savela, which I was excited about, but when I titrated up to 50 mg, I got so nauseous I couldnt function, plus I had no appetite. So we stopped that. She also had me on 5 mg of amiltryptaline at bedime and she prescribed RX-strength naproxen.
At that point, I had done some research on low light laser therapy, and I knew my chiropractor administered it, so I called him up, bringing the medical records for the two years since I had seen him with me.
I then started on a regimen of massage, LLLT, ultrasound, moist heat and stim, and gentle trigger point work.
On a follow-up visit with my rheumo, I had advised her what I was doing. Her concern was whether I was having my cervical spine manipulated. I told her no, he didnt want to do that, and advised her what my therapies were. I was off the Gralise by then, so she upped my dosage of amiltryptaline to 10 mg at bedtime, continue with the RX naproxen as needed, and to come back in two weeks, which I four weeks ago.
I continued with the chiropractic visits, and seem to be having success with them. I have found that even if I do get a flare, the intensity isnt as pronounced, and is of shorter duration. I also altered my diet, eliminating as much sugar as possible, eschewing food with high salt content (which I did anyway), and looking for food with no or little additives.
One of the things I did notice, however, was that my feet started cramping and locking up, along with my calves, and my hands. The tingling and numbness seems to have increased, especially in my lower extremities.
On my next follow-up with the rheumo, I told her what I had been experiencing. She said it was time to get another EMG to assess whether the neuropathy was progressing, and to see if anything else what going on. She referred me to a neurologist.
I saw the neurologist on Tuesday, and was there for almost two entire hours having an assessment and examination done, and she literally actually took the time to go over my prior notes (my medical records can be shared electronically), but to have me to step by step about what I had experienced.
I also told her that I was becoming very concerned about my right hip and knee, and the fact that my right legs feels so heavy at times, that walking was painful and burdensome. So, Im scheduled for EMG/nerve conduction tests on two different Fridays, and then a follow-up visit. But she listened to me, and is treating my whole body. I mean, I know the others were, too; but they were treating my chief complaint which was the neck/shoulder/arm thing, and then wanted to move on to the hip/knee/lower leg and foot thing. I told her about my chiropractor, and she was in agreement with the approach.
So, this is where I stand now. I have seen an improvement over the last 8 months, but Im not where I want to be. I remain positive and hopeful. I know there are things Im leaving out, but wanted to document my journey. The neurologist said I was experiencing Fibro pain as far back as the early 90s based on what I was telling her, plus the disc/nerve issues in my cervical/upper thoracic, and lower lumbar spine into the coccyx, as well as the arthritis. She also advised me I have arthritis in my hands, which I kind of figured, but at least now I know.
Sorry for the length of this, but it feels better memorializing my journey. It also helps me to relate what Ive been to with any other medical providers.
One good things I noticed that my IBS doesnt bother me, and hasnt for about 10 months. So, something good is coming of this!!!
Ive also had chronic, almost debilitating pain in my right hip and knee, and also a very heavy feeling in my right leg since about 1998, which had been getting worse.
So, I first went to one ortho, who took Xrays of my cervical spine and shoulder (since the pain was targeted to my right neck, the shoulder blade which felt like it was on fire, and my shoulder to down my right arm, radiating into my right wrist, hand, palm, thumb and pinky). He referred me to a shoulder ortho, who sent me for MRIs, and then I was prescribed physical therapy, along with an anti-inflammatory.
After not much progress, I was then referred to a rheumotogist, who assessed me, sent me for more films and MRIs; had blood tests done, the result which showed my ANA levels were a bit high, my D levels were low (which I already knew and was taking supplements), were negative for lyme and lupus; and he changed up my physical therapy. After three months with no discernable improvement, he said I should see a neurologist and probably a physiatrist, but continue with the PT.
I next saw a neurologist, and had more blood drawn, and had EMG/nerve conduction study performed on upper and lower extremities. I was diagnosed with neuropathy in my lower extremities not severe but it was there. I also had tingling in both hands and feet, and experienced numbness in the right hand and foot. She prescribed gabapentin (started at 100 mg, and titrated up to 500 mg), and changed my physical therapy. She also mentioned I should probably go see a pain specialist, and consider a nerve block. The EMG was performed in two sessions, and after the follow-up visit where she recommended other specialists, I was scheduled for a follow-up a month after.
Let me say that during this time, no one focused on my hip or knee since the pain in my upper body and arm were extreme, and they wanted to get that under control first.
Four days prior to my follow-up, I woke up debilitated and in excruciating pain, and could not move my right arm at all. When I tried, the pain was exquisitely horrific, almost to the point of passing out. Then Hurricane Sandy hit, and we were without power. Two days later, we were hooked up to a generator so we could have lights and get our furnace putting out heat. The day I went for my follow-up, I was delirious with pain all over and could barely move. My husband was very concerned and wanted to take me to the hospital, but I wanted to see the doctor for the follow-up. I got to the neurologist, she did a quick assessment, then picked up the phone to the nearby hospital, and told them she was sending me over. She told me to go to the emergency room, and would meet me over there in 30 minutes.
There I had just about every single test they could perform, and also had a spinal tap done. Had three different CT scans (head, cervical, and thoracic with and without contrast). They showed the issues with my cervical spine. I also have arthritis. After spending almost 24 hours in the ER, I was released, happy on dilaudid (the drip I was given for the pain), and she prescribed it for me. I was scheduled for a follow-up with her in ten days.
In the meantime, I was let go from my job, and then my insurance changed.
When I went for the follow-up, I was advised that they werent in my network.
I was then referred to a physiatrist.
The physiatrist did a full exam and assessment, sent me for MRIs with a facility that she approved of because they did exactly what she was looking for, and she also directed me to yet another physical therapy group because the PT I was getting wasnt addressing the muscle spasms, muscle tightness, and the pain I was experiencing it was only making it worse. She upped the dosage of gabapentin to 1200 mg, but after I got up to 8, I started having gastric issues because gabapentin in the capsules contains lactose. She switched me over to Gralise, which has no lactose, and is a time release form of gabapentin. She also prescribed Zanaflex as a muscle relaxant, but told me to take it only when I had nowhere to go, or at bedtime, and start out with 1 mg. The stuff knocked me on my butt! She wrote out a prescription for Lidocane patches, Flector patches, and told me how to apply them. She got me two different types of neck braces, and also provided me with a TENS unit, and advised me how to operate it.
Over the course of 12 months, my symptoms diminished due to a combination of getting the right kind of PT and OT, and also because this physiatrist talked to me about posture, how to sit, what types of movements I should do with my body, and to always be conscious of how I was moving it, and to avoid certain types of movements. She also administered non-steroidal trigger point injections with lidocaine, and we tried Xeomin (botox) injections. Trigger point injections worked, and I got relief for about five to eight days. The Xeomin we tried twice, but it wasnt a long-lasting as we had hoped, so we abandoned them.
I was very happy with the progress I was making with her. She treated me for a 12 month period February 2013 to February 201 at which time, I found a job (was unemployed for 16 months), and she was 15 miles to the south of my home, while the new job is 8 miles to the north of my home. She only has office hours M, Tue and Thurs from 8:00 AM to 4:30 PM, so I had to stop seeing her, which greatly upset me, because I had improved so well. Still had pain, but was able to manage it. My fear was that a new job would create a lot of physical demands on me and Id be back in the hospital.
So, I found a new physiatrist in my network. I saw her three times, at which point I had a block performed on my shoulder blade, from which I experienced a slight improvement. On the third visit, she recommended cervical facet joint injections, which I declined yes Im in pain, but I dont want anything, especially steroids, injected that far up in my spinal column so she advised there wasnt much more she could do for me, and referred me to a rheumotologist.
In May of this year, after several tests, I was diagnosed additionally with Fibro, which I never even considered, but my symptoms were classic especially when she did the tender point tests . . . I didnt even KNOW they hurt like hell until she gently pushed them . . . especially my upper extremities, neck, shoulders, elbows and the ones that totally blew me out of the water my hips and knees!!!!! FINALLY! That explained some of the other odd come-and-go pains I got which didnt seem related to other things. I mean, I wasnt happy for the diagnosis, but it explained a lot.
We tried a combination of Lodine and Amrix with which I had great relief for an entire three days until I developed an allergic reaction to the Lodine. I stayed on the Amrix, titrated off the Gralise, and continued with the Zalaflex. I got injections in both hips which helped for a while. She asked me how I felt about physical therapy, and told her I had been on five rounds with five different facilities in the course of two years, and I was done with it. I knew my home program, and did it when I could. We then tried Savela, which I was excited about, but when I titrated up to 50 mg, I got so nauseous I couldnt function, plus I had no appetite. So we stopped that. She also had me on 5 mg of amiltryptaline at bedime and she prescribed RX-strength naproxen.
At that point, I had done some research on low light laser therapy, and I knew my chiropractor administered it, so I called him up, bringing the medical records for the two years since I had seen him with me.
I then started on a regimen of massage, LLLT, ultrasound, moist heat and stim, and gentle trigger point work.
On a follow-up visit with my rheumo, I had advised her what I was doing. Her concern was whether I was having my cervical spine manipulated. I told her no, he didnt want to do that, and advised her what my therapies were. I was off the Gralise by then, so she upped my dosage of amiltryptaline to 10 mg at bedtime, continue with the RX naproxen as needed, and to come back in two weeks, which I four weeks ago.
I continued with the chiropractic visits, and seem to be having success with them. I have found that even if I do get a flare, the intensity isnt as pronounced, and is of shorter duration. I also altered my diet, eliminating as much sugar as possible, eschewing food with high salt content (which I did anyway), and looking for food with no or little additives.
One of the things I did notice, however, was that my feet started cramping and locking up, along with my calves, and my hands. The tingling and numbness seems to have increased, especially in my lower extremities.
On my next follow-up with the rheumo, I told her what I had been experiencing. She said it was time to get another EMG to assess whether the neuropathy was progressing, and to see if anything else what going on. She referred me to a neurologist.
I saw the neurologist on Tuesday, and was there for almost two entire hours having an assessment and examination done, and she literally actually took the time to go over my prior notes (my medical records can be shared electronically), but to have me to step by step about what I had experienced.
I also told her that I was becoming very concerned about my right hip and knee, and the fact that my right legs feels so heavy at times, that walking was painful and burdensome. So, Im scheduled for EMG/nerve conduction tests on two different Fridays, and then a follow-up visit. But she listened to me, and is treating my whole body. I mean, I know the others were, too; but they were treating my chief complaint which was the neck/shoulder/arm thing, and then wanted to move on to the hip/knee/lower leg and foot thing. I told her about my chiropractor, and she was in agreement with the approach.
So, this is where I stand now. I have seen an improvement over the last 8 months, but Im not where I want to be. I remain positive and hopeful. I know there are things Im leaving out, but wanted to document my journey. The neurologist said I was experiencing Fibro pain as far back as the early 90s based on what I was telling her, plus the disc/nerve issues in my cervical/upper thoracic, and lower lumbar spine into the coccyx, as well as the arthritis. She also advised me I have arthritis in my hands, which I kind of figured, but at least now I know.
Sorry for the length of this, but it feels better memorializing my journey. It also helps me to relate what Ive been to with any other medical providers.
One good things I noticed that my IBS doesnt bother me, and hasnt for about 10 months. So, something good is coming of this!!!
Are you still getting trigger point injections? If so, how often?
I remember my trigger point test, and I about hit the ceiling when she pressed on the insides of my knees, I had no idea it would hurt there.
Have you been checked for Spinal Stenosis? I ask due to the leg heaviness and numbing pain. I know you said it was from neuropathy, but it's possible to have both. I have both.
I haven't had any trigger point injections since February of this year, but I was thinking of contacting the new neurologist to see if I can get them right before we leave for North Carolina. It's a ten hour drive, and last year I had them a day before we went down. It helps. I would get them once every three to five weeks.
I've been checked numerous times by all the doctors for spinal stenosis, and thankfully, I don't have it. The numbness and heaviness could be cause by both the neuropathy and impingement of my L5 and S1 nerves. That's why they want to do the EMG.
It did help to write it down. I had forgotten some of the meds I tried, and some of the other things that happened, but I'm in a much better place now, pain-wise and functionality, than I was even a year ago. Yes, I tire easily, so I ensure I get a lot of rest, and have learned to say no, or I'm not sure. As you know, you never know how you're going to feel day to day. I'm also lucky that my husband and daughter are supportive.