antlers
New member
- Joined
- Jul 25, 2014
- Messages
- 4
- Reason
- Undiagnosed
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
Hello everyone,
I am very glad to have found this forum. I have been dealing with chronic pain and other issues for approximately 9 months now, pursuing treatment and diagnosis for four months. I have a lot of stress-related health issues that I was seeking treatment for prior to the emergence of pain: disordered sleeping, depression, anxiety, IBS, and dyspareunia (cause unknown but possibly vaginismus- it is being treated as neuralgia with Gabapentin and topical lidocaine). I probably also have interstitial cystitis but it hasn’t been treated. I have had all those symptoms for over a year.
The main pain that I have is in my left hip and seems to be radiating from my SI joint or pyriformis/gluteal muscles. An orthopedist diagnosed me with sciatica and sent me to PT, which helped, but it didn’t help the fatigue I am experiencing and the pain hasn’t gone away. It’s just less. That was about two months ago. I went to see my primary care again since I was still having problems and she referred me to a physiatrist who she says is her “last resort” for people who can’t seem to recover from pain. She suggested I might have fibromyalgia after testing my “trigger points,” but I don’t think she is very familiar with the disease. My physical therapist and psychologist also suggested I might have it but aren’t sure. My PT identified widespread muscle pain and also mentioned myofascial pain. However, I realize these symptoms are not unique to fibro. I don’t think I have “tender points” that are constant but rather certain areas that tend to be in pain consistently.
I have to be careful about exaggerating my symptoms because of my mental health issues, but I can honestly say that over the past months I have felt an increasing intensity in painful muscle knots in my back, ribs, and neck, stiff joints, and weird dull aches that will hover on a body part for several minutes and then vanish never to be seen again. Even moderate exercise makes me sore for days but I love exercising! I have intermittent paresthesia in my trapezius. My joints like to pop a lot. I also have what feels like a mild sunburn all over my body so that if I scratch myself lightly I experience a mild burning sensation that lasts for several minutes. If I lightly bump my arm against a door or have to grab an object with hard edges, I feel very mild pain for several minutes, which has never happened to me before. It’s similar to the feeling a healthy person would have if they had to pick up something spiky that isn’t very comfortable and carry it a bit. I’ve also become very averse to being patted on the back because it feels like I am being thumped with a closed fist. I haven’t told anyone about the hypersensitivity because it is so bizarre I don’t even know if that’s a real symptom.
My knees often ache and one of them is always tender. I get woken up by back pain and stiffness in my legs every morning. It feels like my body has been up and moving around all night, like I have only slept a few hours instead of a full eight hours. It’s been difficult to function normally because of this. I’m very concerned about the fatigue because I am going to have to adjust my long-term goals if this keeps up. I’ve fallen asleep at work a few times and it was embarrassing. I always go to sleep and wake up at the same time. No trouble falling asleep- I want to pass out by 8:30.
I also have a headache and post-nasal drip 24/7. I keep waiting for it to go away but it never does. Ibuprofen seems to help. Treatments for sinusitis are iffy. I don’t think it could be a bacterial sinus infection because I was already treated with doxy and the drainage I have looks totally clear.
I’ve been tested for just about everything- RA, lupus, thyroiditis, Lyme, inflammatory stuff, etc. All normal, not even an elevated ESR.
Typing up all my symptoms, it sure sounds like there is a hell of a lot wrong with me, but I am actually doing pretty well. I haven’t missed much work, I’m still exercising every day, I have active hobbies, and I have a pretty normal life. I don’t feel nearly as well as I used to, though. I am wondering if bringing up fibromyalgia or CFIDS with the physiatrist is a good idea, and if so how detailed should I be about my various health problems. I also don’t know if these things are connected or have separate etiologies. I want to be sure I get a thorough evaluation and we don’t miss something obscure like spondylarthropathy in ruling things out. After being to so many appointments, I feel like I need to be proactive about making the most of this one.
I’m also wondering if this is even possibly fibromyalgia. All of the stories I have read describe absolutely terrible pain, and I’m not in terrible pain. It’s just annoying, draining, weird, and fatiguing. Some days my pain makes me want to do nothing but lie down with a heating pad, other days I feel almost normal and can resume normal activities.
I have not seen a rheumatologist yet because I live in an underserved rural area that does not have one.
I am very glad to have found this forum. I have been dealing with chronic pain and other issues for approximately 9 months now, pursuing treatment and diagnosis for four months. I have a lot of stress-related health issues that I was seeking treatment for prior to the emergence of pain: disordered sleeping, depression, anxiety, IBS, and dyspareunia (cause unknown but possibly vaginismus- it is being treated as neuralgia with Gabapentin and topical lidocaine). I probably also have interstitial cystitis but it hasn’t been treated. I have had all those symptoms for over a year.
The main pain that I have is in my left hip and seems to be radiating from my SI joint or pyriformis/gluteal muscles. An orthopedist diagnosed me with sciatica and sent me to PT, which helped, but it didn’t help the fatigue I am experiencing and the pain hasn’t gone away. It’s just less. That was about two months ago. I went to see my primary care again since I was still having problems and she referred me to a physiatrist who she says is her “last resort” for people who can’t seem to recover from pain. She suggested I might have fibromyalgia after testing my “trigger points,” but I don’t think she is very familiar with the disease. My physical therapist and psychologist also suggested I might have it but aren’t sure. My PT identified widespread muscle pain and also mentioned myofascial pain. However, I realize these symptoms are not unique to fibro. I don’t think I have “tender points” that are constant but rather certain areas that tend to be in pain consistently.
I have to be careful about exaggerating my symptoms because of my mental health issues, but I can honestly say that over the past months I have felt an increasing intensity in painful muscle knots in my back, ribs, and neck, stiff joints, and weird dull aches that will hover on a body part for several minutes and then vanish never to be seen again. Even moderate exercise makes me sore for days but I love exercising! I have intermittent paresthesia in my trapezius. My joints like to pop a lot. I also have what feels like a mild sunburn all over my body so that if I scratch myself lightly I experience a mild burning sensation that lasts for several minutes. If I lightly bump my arm against a door or have to grab an object with hard edges, I feel very mild pain for several minutes, which has never happened to me before. It’s similar to the feeling a healthy person would have if they had to pick up something spiky that isn’t very comfortable and carry it a bit. I’ve also become very averse to being patted on the back because it feels like I am being thumped with a closed fist. I haven’t told anyone about the hypersensitivity because it is so bizarre I don’t even know if that’s a real symptom.
My knees often ache and one of them is always tender. I get woken up by back pain and stiffness in my legs every morning. It feels like my body has been up and moving around all night, like I have only slept a few hours instead of a full eight hours. It’s been difficult to function normally because of this. I’m very concerned about the fatigue because I am going to have to adjust my long-term goals if this keeps up. I’ve fallen asleep at work a few times and it was embarrassing. I always go to sleep and wake up at the same time. No trouble falling asleep- I want to pass out by 8:30.
I also have a headache and post-nasal drip 24/7. I keep waiting for it to go away but it never does. Ibuprofen seems to help. Treatments for sinusitis are iffy. I don’t think it could be a bacterial sinus infection because I was already treated with doxy and the drainage I have looks totally clear.
I’ve been tested for just about everything- RA, lupus, thyroiditis, Lyme, inflammatory stuff, etc. All normal, not even an elevated ESR.
Typing up all my symptoms, it sure sounds like there is a hell of a lot wrong with me, but I am actually doing pretty well. I haven’t missed much work, I’m still exercising every day, I have active hobbies, and I have a pretty normal life. I don’t feel nearly as well as I used to, though. I am wondering if bringing up fibromyalgia or CFIDS with the physiatrist is a good idea, and if so how detailed should I be about my various health problems. I also don’t know if these things are connected or have separate etiologies. I want to be sure I get a thorough evaluation and we don’t miss something obscure like spondylarthropathy in ruling things out. After being to so many appointments, I feel like I need to be proactive about making the most of this one.
I’m also wondering if this is even possibly fibromyalgia. All of the stories I have read describe absolutely terrible pain, and I’m not in terrible pain. It’s just annoying, draining, weird, and fatiguing. Some days my pain makes me want to do nothing but lie down with a heating pad, other days I feel almost normal and can resume normal activities.
I have not seen a rheumatologist yet because I live in an underserved rural area that does not have one.