Hitting a dead end.

I am female and just turned 30 to start with. I've been pretty much healthy, minus migraines and minor hypothyroidism which is being kept under control with medication that I get tested regularly for.

Back in mid-July I began experiencing what felt like muscle spasms in my lower back. It didn't ease or go away, I had thought maybe my weight was causing a problem. At the time I was 245, or thought I was, as I quit weighing myself at 5 foot 10. I began yoga again and core exercises being cautious of my posture at all times. I could only keep it up for a week before the pain got worse. It took about a month and a half of my back getting worse until I couldn't sit down before I went to a doctor. I had first found out I had lost around 25 pounds. They first had me start physical therapy and muscle relaxers. After the muscle relaxers had relaxed the upper parts of my back, my lower back started screaming, my legs hurt real bad, and experienced numbness in my thigh. My PT had wanted to start my therapy slowly to not hurt my back more. I had more numbness, dizziness, nausea, but once had experienced what felt was going to be an involuntary bowel movement with an extreme sense of urgency. After it passed with no accidents the room started spinning really bad, as in watching the wall move pretty quickly. My therapist had me stop immediately until I could see my doctor. They ordered an MRI of my back and a CT of my head, as well as blood work for infection/virus/bacteria, all of which came back clean. So I was sent to a neurologist. He double checked my MRI himself, saying my spine is textbook healthy, including good and wide at the base, good space between, everything was fine. He said it sounded like fibromyalgia, and muscle relaxers (which do nothing now btw) and physical therapy are my only options. He said I may want to seek a pain clinic but that was about it. He had no idea what could be causing it because everything has come back fine.

I have since lost another five pounds at least. I'm starting to get really bad pain in my arms, but it doesn't last. The pain in my legs is all the way down now, and first thing in the morning is the only time they don't hurt. My back is in constant pain. Getting painful weakness in my arms is getting more common. I've had pins and needles in my toes and fingers, hand and thigh goes numb, sharp pains in my head that don't last, aching in my shoulders. Yesterday my jaw started hurting as well as minor pain around my jaw on the surface.

I'm going back to my regular doctor this week to see if we can get a second opinion even if its from him. Every day something else starts to hurt, every day the pain is a little more intense. I'm spending more time feeling like I'm struggling not to vomit. Its.. honestly a little scary, not sure what's more frightening though, not knowing what it is, or to get worse.

I'm not even sure why I'm posting here. I'm reaching, I know that. At any rate, thanks to whoever takes the time to read this, any advice or insight would be appreciated. If my next appointment is a bust, I might scream finally.

I've been covering screams and tears with morbid jokes and laughing. I'm trying to keep this from being too noticeable from my kids haha, and my husband is feeling terrible, but it helps me too.

Yes the MRI was a full spine. I have had no accidents or falls or even tweeks, which of course makes it harder for them to find somewhere to look lol. Originally my doctor sounded determined that it must be nerve damage or neurological, until seeing my neurologist. Nothing feels quite as defeating as when a specialist throws up his hands and says I don't know. I'm strongly considering asking, or suggesting a nerve biopsy, or if there's a reason one hasn't been done yet.

Out of curiosity, with things like fibromyalgia, when there is inflammation, wouldn't that be present if they did blood work to specifically find inflammation? Only curious because that seems to be something I see a lot, but that test had come up negative as well.

That is an awesome idea. I hadn't even considered that. We have a university up in Iowa City not too far from us, I'll head up there if this ends up being another dead end. Are getting medical records as simple as requesting them? Sorry it may be a dumb question but I've never had to do this before.

Ok, I will ask for those this week, at least start keeping a record of it at home if this ends up taking me elsewhere.

As far as I know I have not been checked yet for MS, but I do know with neither the MRI nor the CT scan did they do contrast dye. This leads at least a few things I can bring up this week. Is that the only way they can find MS??

I really do want to say thank you guys so much for taking the time to read and respond. Overall I know it hasn't been that long that I've been dealing with this, but I am already seeing the effects on my family. My husband, more so even than me, is a fixer, and not being able to fix this, or even help is really stressing him out I think. Unfortunately I find it helpful for me to review everything that's going on physically, the rate of pain to where it is now, especially since I keep everything caged in all day to keep it from my daughters. Sometimes at night I lose it and just cry partly out of frustration, the rest out of intensity of the ow's. I try hard not to do that and find myself usually just going to bed as soon as my girls do even if I'm not tired and just end up laying there playing stupid games on my phone until I pass out. Sorry I'm having a really bad day, I think I tried to do too much over the weekend and its catching up, although I can't take any breaks, too much to do.. Spent maybe too long reflecting today while attempting to just not think at all lol. Since my last appointment which was Friday, I've been too busy to really deal with or come to terms with anything. Its strange stuff. Though the fact that you guys seem to have such lifted spirits and comforting words at least lets me know that there's a mental battle still to be fought, even if the physical one is not.

Sunny P,

Here's one of Backtolife's threads where she is deciding to go to a teaching hospital. There are some comments I thought might be helpful to you. She is not diagnosed yet.

https://www.healingwell.com/community/default.aspx?f=16&m=3178910

Also, if you have a chance, read Coti's thread with the comments made by lila w. The 2 of them are near your age and although they are diagnosed, they still share some of the feelings you have. Just thought it might help you to read these.

I am in limbo waiting for a teaching hospital in my area to call me to make the appointment. My primary doctor sent the referral on 9/22.

Also, I know that my primary isn't an expert in pain management but if I'm very honest, I'm afraid of going to pain management and them deciding to not prescribe my pain pills. I cannot survive without them and Lyrica. I'm just afraid of having to explain all what's been going on for years and them not understanding like my primary does. I don't want to be seen as "drug seeking."

I have a serious problem getting to my doctor appointments. I live 35 miles from my doctors and I can't drive myself bcuz of the pain and I can't take pain pills and drive so I'm really screwed right now. My 80 yr old mother moved in last year just as my symptoms were getting worse. I'm supposed to be taking care of her but she's the one driving me around. Isn't that just crazy?!?!

There ought to be some sort of service for sure. Most places do offer some assistance in that regard, but I am also speaking from a point of view from coming from a larger town. I now live in a much smaller area (yay corn fields) and out here for example I'm not entirely sure. I know that we can't even get assistance from the school with getting our children back and forth because we live in a town that is one square mile and we live within that one square mile. A friend of mine has planters fibromatosis which has her in extreme pain all the time and she has a granddaughter that she has custody of that goes to the same school and for the last two years has been trying to get someone to help and alas no help whatsoever. I'm getting concerned on that front as well. I'm a stay at home mom, and as the weather is getting worse, and my symptoms are worsening, I'm not sure if I'm going to be able to continue to walk her to school every day. I walk twenty minutes twice a day, every day, I have to admit its getting harder. This morning alone my knee felt like it was going to explode half the walk and I'm working like crazy to stop from limping as that can cause so many more issues.

Thank you for putting that link by the way, I didn't even think about the fact that I would need a referral. I'm starting to write down all this stuff lol, not sure I'm going to be able to keep all this stuff in order.

Honestly, I'm scared to death of pills as a whole. I tried my Gabapentin for the first time last night and my husband has to keep me calm as it first started to kick in. I have to admit I did sleep well, but I have such a hard time with the idea of losing my faculties, and I know I will never be able to take this during the day. It didn't help with the pain, but at least I can say I slept like the dead. Right now, my primary concern isn't getting a handle on the pain, but getting a diagnosis so we can either start fixing it if it can be fixed, or start looking into alternative therapies, even looking into things that have worked for other people with the same condition. I do agree that pills alone are not the answer, but it I can avoid them I would like to. I'm on enough pills already (Topamax, Pristiq, Synthroid) I'd like to avoid taking anymore. I'm no health nut, nor a hippy, but I've always had a fear of drugs, especially anything that could potentially be mind altering.

Last night I did read the Spoon Theory though. I have to admit, it did help. I have to say, this forum has been surprisingly helpful all the way around, from you guys to the resources, its helped more than I can really put into words. Overall my outlook today is better. I think I found this place at a good time. I've not had a lot of time to adjust mentally or physically to this yet, but being here is helping with the process. I've had a bad habit of trying to absorb and adjust and move forward too quickly with bad news, and I'm finding this one may not be as easy to do that with lol.

Sunny P,
I'm wondering when you go see your primary this week. You have lots of suggestions to discuss just from this site, plus your own. I suggest you consider what mckaren has just said. Perhaps that could be your 2nd opinion. It possibly will take some time to get into a teaching hospital, so while waiting you could try that and maybe even find your answer there.

Do you have a back up plan for the walk to school?

So my doctor is sending me to the university here. His suggestion, not mine. I'm looking forward to it, scared but all the same happy, but I won't be able to go for another month.

Hey Sunny,

That's progress in that you now have your referral.  I know that a month seems like forever, but I promise it could have taken much longer to see the specialist.  Meanwhile, was your PCP able to answer any of your questions or address your pain?

I know it much be SO much harder to deal with relentless pain as a mom.  I was never able to conceive due to the endo.  Although it certainly left an emptiness in my life, I understand now that I could not possibly have fought this disease AND been a mom.  I hope that you find the answers and solution to your pain.  I feel confident that is much more possible, as others have said, through a teaching hospital.

Until then, please lean on us.  HUGS!

~~Dixie