Julian // Jules (slinkslowdown) wrote in chronic_pain,
Julian // Jules
slinkslowdown
chronic_pain

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Help?

I've been experiencing bone and joint pain and weakness for over 10 years.  It all started when I was 12 and broke my left foot.  The same day my cast was off, I broke my right ankle.  I never received any check-ups or physical therapy after these consecutive breaks and I suspect that may have led to my current and worsening problems.

Until this past year, the pain and weakness have been limited to my hips and ankles and only occurred 55-56% of the time.  However, recently, I've had new pain and weakness in other areas and it's all occurring about 90% of the time.  The pain is very sharp and by weakness, I mean that whatever joint is experiencing pain won't hold my weight at all.  It's not that it hurts too much, it just physically buckles and won't work.

The new pain and weakness happens in my left collarbone and just on the right side of my spine where my tailbone begins.  When my collarbone acts up, it will pop in and out of place for up to days at a time and I can't lift anything with that arm.  With the new back problems, the pain and weakness are extremely bad whether I'm walking, sitting, or laying down.  I have found that I can kinda shuffle sideways and that alleviates the back problems, though it makes the ankle pain worse.

Also, I've needed to use a cane and wear a compression bandage on my left ankle to even be able to walk.  Without both of those, I either have to crawl or lean heavily on the walls of my apartment to get from room to room.

I've seen two GPs dozens of times and one orthopedic surgeon twice about this.  They've poked and prodded me; watched me walk, run, and try to balance; taken more x-rays than I can count; done blood tests for lupus [which my mother has]; and done blood tests for arthritis.  Nothing they've done has come up with anything and they've just shrugged it off as a mystery.  My psychiatrist pisses me off because he thinks it's all in my head and isn't real.

OTC medications and prescription arthritis meds [which were given to me despite the negative arthritis tests...] do absolutely nothing for the pain.  I don't want to be put onto heavy narcotics.

Under the cut are illustrations of where the pain occurs.



I fucked up and the line should be on the other side.  But this shows the whole area which hurts and pops in and out when my collarbone acts up.


The darker dot is where the new back pain is occurring.


This recent back pain is absolutely debilitating me.  I need to see my doctor about it, but I want to be taken seriously and need to know what to ask for or even have some suggestions to lead him to what it could be.

WTF could this be?  What should I ask my doctor?

ETA: I just made an appointment with my GP for December 5th. I'll ask for an MRI and a referral to a rheumatologist.

ETA2: I just remembered another symptom that's eluded my doctors.  Whenever I'm touched [by myself, another person, or an object] gently or with moderate force, it feels like I've been punched hard.  The pain can linger for hours and I never bruise from it.
Tags: ankles, back, back pain, doctors, help, hips
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slinkslowdown

November 29 2012, 03:46:26 UTC 4 years ago Edited:  November 29 2012, 03:49:13 UTC

I haven't had an MRI for these things yet, so I'll ask about getting one. It'll be at least several months' waiting time for it, though. When I needed an MRI for possible seizures, the wait time was about five months.

The orthopedic surgeon did say that my hip problems could be nerve pain, but she didn't offer any suggestions for a solution beyond not wearing tight pants that would aggravate the area. Is there anything that can be done about nerve pain?

I've never been diagnosed with anything to do with ligaments, but when I saw a physical therapist a few years ago, she was pretty freaked out by how far I can rotate my ankles without any discomfort.

ETA: Oh, jeeze, I just looked up Ligamentous laxity and that definitely sounds like at least my ankles. I can't count how often I've rolled, sprained, and broken them in the past decade.

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Walking makes the back pain significantly worse and so does standing. It still hurts sometimes when I sit or lie down, but not as often or severely.

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To be honest, I'm relieved to have some medical terms I can bring up with my GP, even if it means I could be diagnosed with something shitty. He's very receptive to suggestions and in the past has given me whatever tests I ask for. It was my idea to test for lupus and he just wrote up the forms and sent me off for tests.

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slinkslowdown

4 years ago

slinkslowdown

4 years ago

Gabapentin is thought to be good for nerve pain - I took it for migraines and it did nothing for them but it DID resolve a nerve thing in my ankle that never was as bad even after I'd stopped the gabapentin. So, some potential solutions there.</p>

Good luck with it!

Thanks for the suggestion.
Firstly I am so, so sorry you're going through this.

Very good suggestions to look into above. I take Gabapentin and it's helped out with my own nerve pain, but your mileage may vary. There are other medications like Gabapentin so if that one doesn't work or the side effects are wonky that's not the only thing out there thankfully.

Ehlers–Danlos syndrome is something to peek into as well. There's many types, but one of them does involve joint instability and musculoskeletal pain.

Agh and I wanna slap your psychiatrist! Seconding finding a new one. "It's all in your head" is the worst thing to tell a patient IMO... kinda sends up a big red flag about the medical professional, too. :/

I really, really hope you can find some answers! I myself had a "mystery diagnosis" for a couple years and can relate to the frustration. Best wishes to you.
Thank you.

I'm not too worried about finding a new psychiatrist. I can't, actually--there's very few in my small city and even fewer who'll work for free. But all I really need him for is medication refills. My therapy is handled by a very kind and understanding woman. Shrinks don't do therapy in my city because there's so few of them to go around.

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No. The only extreme flexibility I have is in my ankles; I can roll them to pretty far angles without pain. When I was seeing a physical therapist, she was pretty shocked by it. I believe this may be from the repeated breaks and sprains, though.

I've read that bruising easily is another symptom of EDS. I don't bruise much, but I do feel extreme pain when I'm touched gently or with moderate force. It feels like I've been punched full-force and the pain lingers for up to hours afterwards, though I don't bruise from it.
Fibromyalgia and RSD/CRPS come to mind when I think on the pain of being touched. Both conditions make folks pretty sensitive though from different things. I want to lean more towards the RSD category, but only your doc could tell for sure which one it may be!
This sounds rather like what my cousin's been through. She has Reflex Sympathetic Dystrophy and Ehlers Danlos Syndrome. It all started when she was in the army at the age of 18 and got stress fractures in her feet, back in the days when she could still walk. She gets very high levels of pain indeed, her joints dislocate a lot, all sorts of stuff. I'm no longer in touch with my family, so I can't tell you much more than that, but they would be good starting points.

I don't want to be put onto heavy narcotics.

Could I ask why? Caution is understandable, but you must remember that while narcotics have a number of problem areas, they can also be very valuable indeed. Pain isn't just unpleasant to experience, it's actually very bad for you. Any drug which treats severe pain will have risks and side effects, I'm afraid. Narcotics do, anti-epileptics such as gabapentin do, anti-inflammatories do. It's something we have to learn to deal with. The idea is that you find a med which makes your life better overall - a good doctor shouldn't keep you on something that's more trouble than it's worth.

There are some good patient-led pain organisations around, and I would recommend chatting to them. You can talk to them about your concerns about medication, and they may also have some ideas you can follow up in the realm of diagnosis. I don't know any in Canada, I'm in Scotland myself, but I imagine they exist, at least in North America.

Virtual tea and sympathy are flying your way.
I mis-phrased that about the narcotics.

What I mean is that I'm not actively seeking them. I don't want to just give up on finding a diagnosis or diagnoses and just end up looking like a drug-seeking patient. I want to try everything possible; if narcotics become an option, then I'll definitely try them.
Ah, that's a different matter. There's an art to bringing up potentially addictive meds with doctors. We can help if you need advice on how to get the right pain relief without your doctor thinking you're a junkie! You sound like you could definitely do with something for the pain, anyway. It shouldn't interfere with getting a diagnosis if you start pain meds now. In fact, it may even provide useful info on how you react to what.
Up until now, I've just told him what hasn't worked in the past and asked what else he can offer and he just shrugs me off. =/

elettaria

November 29 2012, 18:29:20 UTC 4 years ago Edited:  November 29 2012, 18:30:06 UTC

Do you think he'd be receptive if you did your own research and then asked for a med to try? In the UK at least, you can get milder opioids over the counter, so something like that could be a start, as you could then say that you tried it, it took the edge off, you're interested in trying something stronger. Many doctors are clueless with pain, sadly.

slinkslowdown

November 29 2012, 18:31:08 UTC 4 years ago Edited:  November 29 2012, 18:33:48 UTC

He's been receptive to both medication and diagnosis suggestions in the past. I see him on the 5th and I'm going to ask for an MRI, a referral to a rheumatologist [all specialists here require a referral], and to try gabapentin. I think that considering he and my orthopedic surgeon are suspicious this is a nerve problem, gabapentin is a good place to start.

ETA: In regards to your edit: A few years ago, my mother gave me one of her Percocets because I was in so much pain I had to crawl in order to move around the house. It completely killed the pain for several days. However, even just that one pill triggered a reaction that scared me--since then, I've had this nagging voice in my head asking for more, more, more of it because of the feeling it caused in me. I'm very scared of becoming addicted if I were to be given similar drugs.
Is there someone you can talk to to work through that? Even if you don't go for opioids, you sound like it'd help to get through what happened with that. Having a nagging voice in your head doesn't necessarily mean you're high-risk for addiction. The people who are high-risk for addiction tend to be actually taking stuff, rather than fretting about the possibility of using it. If anything, you sound drug-averse rather than drug-seeking. This is why I suggested talking to someone about it, as all of this can take a while to get your head around. Living with pain is a much bigger deal than society presents it as.

If you are interested in trying a potentially addictive drug, you could ask your doctor to dole it out in small quantities, and to review it with you regularly. There are various strategies like that available, and in my experience, doctors are happy to work with a patient who is concerned about such things, and sees it as a sign of responsibility. I occasionally take Valium for severe PMS, and found the other year that when combined with co-codamol it works very well for muscular pain and migraine too, so I've been through all this with my GP. I remember when she visited me once when I had a very painful outer ear infection, and was literally sitting there clawing at the table from pain. I pretty much begged her for meds, then paused and said, "Er, I'm not a junkie or anything." She said, "I don't think you'd get very far!" and we shared a laugh at the idea of me trying to get to a street corner for drugs. I mean, I'd need someone to provide transport to get me there first...

Do you have problems with anything else, such as drinking or compulsive eating? You don't have to tell me if you're not comfortable with it, but was was the reaction that scared you from the Percoset? People are pretty open-minded here, I doubt you'll say anything that bothers anyone. Also, are you comfortable telling your doctor what you just told us? It could help you work together on a pain meds plan that works for you.

Do be careful with gabapentin, it's got quite a strong side-effect profile. I had a horrendous time with withdrawal from that. It's definitely a useful drug and one that may be good for you to try, just approach with caution. Of course, by the time you get into serious pain relief for anything, all of it has to be approached with caution! There aren't any easy solutions, I'm afraid.

A rheumatologist sounds like a good bet.
After taking the Percocet, I was at the point where I regularly considered stealing my mother's supply [they were leftover from a surgery and she didn't need them]. I also know of a neighbor who sells them illegally and I can't count how many times I was nearly on her doorstep. Something did stop me from actually following through with those things, though.

A few years ago, I was spending all of my excess income on alcohol because I was trying to dull my emotions after delving into prostitution. It got pretty bad, but now I'm able to have a few beers or coolers a few times a year without trouble.

I'm definitely an over-eater, sometimes compulsively. Boredom, stress, sadness--all of it makes me eat. I rarely ever feel full. I can eat and eat and eat and while I'm not hungry, I'm not full, either. The only time I've truly ever felt full was when I was on Topamax for a year. It was horrible; I'd be in pain and get physically sick after eating only a sandwich; that was too much food for my body to handle. I never once felt hungry over the course of that year and I lost a lot of weight.

I have PTSD, bipolar II, and OCD and am generally a pretty impulsive person.

I'm really not comfortable telling my GP any of that. He... hasn't been understanding in the past about things that are important to me. He completely ignores that I'm trans* and it took me browbeating him for several minutes for him to give me birth control. "My periods cause me significant pain and distress" wasn't a good enough reason for him, eugh. He's good with giving me referrals and [usually] going along with what I ask for, but otherwise he really intimidates me and makes me feel terribly invalidated.

Unfortunately, getting a new GP just isn't an option. His practice is the only one within walking distance [I don't drive, know no one with a car, and can't afford the bus] and no one else there is taking new patients. Both his attitudes and the fact that it's a 30 minute walk [hobble...] each way really deters me from going there often. :(

elettaria

4 years ago

slinkslowdown

4 years ago

I'm a bit late but wanted to make a point on the opiates.

Of course you would want more of the percocet! How wonderful to be free of pain! I take morphine sulfate, which is long acting. My body is now dependent on it to the point that when I am given Dilaudid instead, it doesn't work, as we found out this morning when I had a stroke. Until they gave me morphine, I was moaning and crying out even while unconscious. A person in pain asking for pain meds can be easily mistake or a drug seeker, but w want the pain to stop instead of wanting to be high. If taking the prescribed amount of meds to stop (or reduce, sometimes it can't be eliminated)pain is enough, then it isn't an addiction, it's a dependency. If, on the other hand, you want to take more than you need to feel high, then you do have a problem with addiction. I wouldn't say being an overeater would imply you have an addictive personality, though. There is a difference in degree.

So I would suggest you think about how you feel about the med. If I had no pain relief and I knew I had a neighbor selling them, that would be incredibly tempting to me as well, because my pain is high enough that I would be nonfunctioning without pain medication. If with this additional information you still feel you should avoid narcotics, then more power to you. But I wanted to make sure you understood the difference between dependence and addiction before you decide that.
Thank you for your comment.

I do understand the difference. I'm dependent on my Effexor and Seroquel because they allow me to function normally, mentally and emotionally speaking.

But the craving for that Percocet wasn't related to the pain, it was for the high it gave me along with the pain relief. I've felt the same thing in regards to Valium, and I do abuse that. I'll take my entire two-month supply at once because of the need to feel that high again. 5mg of Valium used to do it for me, but now it takes 100s of mg for me to feel any effect at all. I don't ever want to be given that chance with an opiate because I know it would ruin me. I'm lucky enough that I don't get withdrawals when I'm without Valium, but I know that wouldn't be the case with an opiate.
OK, you have a very good handle on what you should and shouldn't take. I've run into folks that think they're addicted because they don't want to be in pain, and I hate to see someone in pain when it can be treated without too much danger to them, but you are fully aware of what you can and can't trust yourself with. Thanks for your response.