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antlers

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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.
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
Hi. Some folks experience more pain than others, so even if you're not in terrible excruciating pain you could have fibromyalgia. The biggest clue is that it is always there and worse on other days with the fatigue. All your symptoms do correlate with fibro except the post nasal drip. I'd definitely mention them to the physiatrist.
 

doulachic79

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US
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FL
There is a large association in the medical community between the diagnosis of fibromyalgia and psychiatric illness. I have spoken to several doctors who think it is largely a mind thing and people who believe they suffer it convince themselves to be in pain.

I do find that many people who have fibromyalgia also suffer from depression, this could very well be pain-depression, depression-pain cycle. Like the age old saying "what came first, the chicken or the egg?"
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi there! A lot of your symptoms sound a lot like fibro, but I doubt they're all related to fibro. The post-nasal drip is something I get too, but I'm quite sure it is related to a sinus issue and not fibro. You never know tho, your best pick is to see a really good doctor, I'd have a hard time deciding between an internal medicine doctor, a rheumatologist or a neurologist. I suggest you to see all those 3, specially taking into consideration you have been dealing with this for just 9 months. If I were you I'd head to see an internal medicine doctor quick. Sadly pain can be caused by a lot things, so you better make sure is nothing serious.

Best of luck and keep us posted!
 

antlers

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Joined
Jul 25, 2014
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4
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Undiagnosed
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00/0000
Country
US
State
WA
I have had a few more appointments since my last post so I thought I would update. Hopefully it will help people who are in a similar situation.

First, my psychologist wants me to have a sleep study done because he does not think the fatigue I am experiencing is due to depression. I saw a specialist about this and they have decided to do a formal study and also an MSLT to test for narcolepsy. Apparently it is not normal that I start dreaming immediately after falling asleep, and during ten minute naps. Because of this, I was told to drop the Zyrtec and Gabapentin. My brain fog is gone (probably the Gabapentin) but I am still sleepy. The pain immediately got worse, but it is still not severe. At this appointment, I was also tested for the HLA-B27 gene (negative). My labs still look great.

Also saw a gynecologist to rule out endometriosis and fibroids. She has referred me to someone for the bladder pain which is waking me up several times per night now.

And finally, I have found a good family medicine doc to help me sort through all of this and coordinate care between other providers. She made some adjustments to my other medications and gave me some tips for helping them work more effectively.

So, aside from the weird pains I am having throughout the day, and the headache, and sleep, I am doing okay. I tried going for a hike today but started having stabbing pain in my foot. It was not bad enough to prevent me from walking, but concerning because it felt like I hit a nerve or something. I am also doing muscle relaxation exercises now as per my psychologist's instructions. I read a bit about depression and chronic pain. It seems possible that maybe my pain is a symptom of depression, but it's weird because I don't feel particularly depressed when I am in pain. The symptoms of the two problems do not mirror each other in intensity.

I will have more updates after my physiatry appointment at the end of the month. Thanks everyone for your replies so far.
 

racenutalways

Member
Joined
Aug 18, 2014
Messages
13
Reason
DX FIBRO
Diagnosis
01/2010
Country
CA
State
ON
Multiple chemical Sensitivity and fibro and chronic fatigue, plus phsycological diseases are linked. I showed symptoms of bi-polar, schizo, sensory overload, ADHD, I have been labelled with fibro, I suffer from CFS, asthma, allergies. And I have linked them to MCS. Multiple Chemical Sensitivity are linked to fibro and CFS, If you have 1, chances are you have the other or all 3, like I do. Food intolerances, prescription drugs, fabric softeners, perfumes, the list is endless. All make me worse.
Find a specialist that deals with MCS, or EI(Environmental Illness), they are better educated on Fibro.
 

gypsyangel

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Joined
Aug 30, 2014
Messages
11
Reason
Undiagnosed
Diagnosis
04/2012
Country
US
State
ID
Here's whats odd about my chronic pain. For the past 2 years when I go to see my doctor, she always opens the conversation with, "how's your fibromyalgia?" What? You never said I had that. Her response is always, "oh". What the heck? Is that's whats wrong with me or not. It seems like doctors are afraid to put a "label" on some of their patients. I think it is too ironic that she keeps saying that to me. I'm not sure what to think anymore. I keep telling myself I'm going to change doctors, but I just don't want to start all over with someone new.
 

GemmaRowlands

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Joined
Jul 29, 2013
Messages
86
Diagnosis
00/0000
Country
UK
State
Merseyside
I think the above poster makes a good point about doctors being somewhat wary of giving people a label. I think that once you have been diagnosed with something, it is very difficult for you to shake that label off, so if you don't really have a condition you could find it affects you in a negative way just having that label.

OP how are you doing now? Are you any closer to finding answers, or coping methods, or anything like that? There is so much that is unknown about this condition, it can be very difficult to deal with at times, but you just have to put a certain amount of faith in your medical team and hope that they are able to find something that will be of help to you.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
I have had a few more appointments since my last post so I thought I would update. Hopefully it will help people who are in a similar situation.

First, my psychologist wants me to have a sleep study done because he does not think the fatigue I am experiencing is due to depression. I saw a specialist about this and they have decided to do a formal study and also an MSLT to test for narcolepsy. Apparently it is not normal that I start dreaming immediately after falling asleep, and during ten minute naps. Because of this, I was told to drop the Zyrtec and Gabapentin. My brain fog is gone (probably the Gabapentin) but I am still sleepy. The pain immediately got worse, but it is still not severe. At this appointment, I was also tested for the HLA-B27 gene (negative). My labs still look great.

Also saw a gynecologist to rule out endometriosis and fibroids. She has referred me to someone for the bladder pain which is waking me up several times per night now.

And finally, I have found a good family medicine doc to help me sort through all of this and coordinate care between other providers. She made some adjustments to my other medications and gave me some tips for helping them work more effectively.

So, aside from the weird pains I am having throughout the day, and the headache, and sleep, I am doing okay. I tried going for a hike today but started having stabbing pain in my foot. It was not bad enough to prevent me from walking, but concerning because it felt like I hit a nerve or something. I am also doing muscle relaxation exercises now as per my psychologist's instructions. I read a bit about depression and chronic pain. It seems possible that maybe my pain is a symptom of depression, but it's weird because I don't feel particularly depressed when I am in pain. The symptoms of the two problems do not mirror each other in intensity.

I will have more updates after my physiatry appointment at the end of the month. Thanks everyone for your replies so far.

That sounds great, it seems you have some really good docs by your side, good for you. I hope isn't narcolepsy what you have tho. I had similar sleeping issues but have never really paid that much attention to it. But I have heard dreaming too soon is a bad sign. Do you suffer from sleep paralysis, I do.
 

Mowmow

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Aug 31, 2014
Messages
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US
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NY
I can relate, I have been having this horrible pain in my left hip. From my lower back to my mid thigh. I am in horrible pain most of the time and probably a horrible person to be around when I am in pain. I feel sorry for my family having to deal with me. It comes and goes and I get random pain without cause. I am currently looking for a new doctor to treat me. But I am so tired all the time, I don't have will power enough to keep looking. It's hard, just have to stay focused. I wish you luck.
 

atuckerit

Member
Joined
Sep 11, 2014
Messages
28
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
State
WI
Do you try to use yogi bedtime tea to rest?
This helps get my muscles and tissues in a more rested state.
It does help me a lot to be able to relax and sleep better.
Much better at managing the pain when I take that before bed.
 

racenutalways

Member
Joined
Aug 18, 2014
Messages
13
Reason
DX FIBRO
Diagnosis
01/2010
Country
CA
State
ON
Soy products triggers my insomnia, takes me 2 hours to fall asleep.
Wheat, MSG/aspartame causes my hips, back, neck, knee and feet pains to the point I need a cane to walk.

Stinging Nettle tea mixed with chaga tea is yummy and more soothing than prozac, plus it's natural and caffeine free. That's if you can handle salicylates....
 

antlers

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Joined
Jul 25, 2014
Messages
4
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Undiagnosed
Diagnosis
00/0000
Country
US
State
WA
That sounds great, it seems you have some really good docs by your side, good for you. I hope isn't narcolepsy what you have tho. I had similar sleeping issues but have never really paid that much attention to it. But I have heard dreaming too soon is a bad sign. Do you suffer from sleep paralysis, I do.

I have something very similar to sleep paralysis- I'm aware of my physical body not being able to move, but I am still dreaming. It is very distressing and I often wake up crying out. I have found that if my sleep is disturbed frequently, I will go into "REM rebound" during the day and dream during short naps. I was able to do the sleep study. I don't have the formal results back, but I know I do not meet the criteria for narcolepsy because I didn't sleep fast enough on the MSLT, so that's good! I have a feeling they are going to say it is related to anxiety/depression and maybe medication or further treatment for that will help.

The physiatrist diagnosed me with SI joint dysfunction and over-pronation. I was referred to physical therapy. The PT found that my muscles are spasming to the point that they are pulling my pelvis out of alignment, putting torsion on my SI joint and lower back, probably hips too. This would explain why I seem to feel sore all of the time- none of my movements are normal and my poor spine is having to deal with pressure it shouldn't have to. She gave me a book on chronic pelvic pain. I have been treating myself with the relaxation exercises and stretches for hypertonic pelvic floor. What is truly awesome about this is that the bladder pain and burning urination have completely stopped! I am still having muscular pain but I want to give PT a chance since she has a very different approach than the last therapist I saw.

So, it is looking more like I do not have fibromyalgia but rather a chronic pain condition with a mechanical cause, along with fatigue/poor sleep exacerbated by depression, which of course exacerbates the pain... But things are really looking better now! Like others have mentioned, I found that relaxing with herbal tea targeted at symptoms and avoiding certain food triggers has helped a lot. I wish everyone here well and thanks for listening!
 

antlers

New member
Joined
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Messages
4
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00/0000
Country
US
State
WA
Final post!

Sleep study was normal, although I have slightly fragmented sleep and low sleep efficiency. Doctor said I "breath like a champ."

I am now in physical therapy for joint hypermobility after a physical exam showed that most of my joints are hypermobile. I did some reading about it, and I think joint hypermobility syndrome actually explains the majority of my symptoms better than fibromyalgia. I still have pain on a daily basis but at least now I know why!
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
I have something very similar to sleep paralysis- I'm aware of my physical body not being able to move, but I am still dreaming. It is very distressing and I often wake up crying out. I have found that if my sleep is disturbed frequently, I will go into "REM rebound" during the day and dream during short naps. I was able to do the sleep study. I don't have the formal results back, but I know I do not meet the criteria for narcolepsy because I didn't sleep fast enough on the MSLT, so that's good! I have a feeling they are going to say it is related to anxiety/depression and maybe medication or further treatment for that will help.

The physiatrist diagnosed me with SI joint dysfunction and over-pronation. I was referred to physical therapy. The PT found that my muscles are spasming to the point that they are pulling my pelvis out of alignment, putting torsion on my SI joint and lower back, probably hips too. This would explain why I seem to feel sore all of the time- none of my movements are normal and my poor spine is having to deal with pressure it shouldn't have to. She gave me a book on chronic pelvic pain. I have been treating myself with the relaxation exercises and stretches for hypertonic pelvic floor. What is truly awesome about this is that the bladder pain and burning urination have completely stopped! I am still having muscular pain but I want to give PT a chance since she has a very different approach than the last therapist I saw.

So, it is looking more like I do not have fibromyalgia but rather a chronic pain condition with a mechanical cause, along with fatigue/poor sleep exacerbated by depression, which of course exacerbates the pain... But things are really looking better now! Like others have mentioned, I found that relaxing with herbal tea targeted at symptoms and avoiding certain food triggers has helped a lot. I wish everyone here well and thanks for listening!

So sorry about your SI joint dysfunction, but very glad to read you are feeling better now, at least you do sound a bit more cheerful and positive :D Kudos to you! Also glad you don't have narcolepsy, I have heart it's an awful thing to have. When I was younger they thought I had it, but never confirmed that. I used to fall asleep really fast, other times I had troubles with it and feel so sleep deprived, I still do btw.

Please keep us posted :) Let us know about your sleep study, I'm sure everything will be alright :)
 
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