Post # 1
Help me bees please. My twins medical issues have escalated to an unmanageable amount for her. The problem is her biggest symptom is now chronic pain which so many doctors don’t care about/won’t help/don’t listen/think she’s lying/etc She’s starting to get to the point of being suicidal from the pain. NO ONE HAS FOUND ANSWERS she’s done a multitude of tests nothing shows up yet she’s vomiting regularly, is only 21 yet can’t move without intense pain that’s now everywhere, has daily fevers etc which sounds serious yet doctors don’t take it seriously.
I’ve been told to get her to a Boston hospital because the best doctors are there. How do I actually get her in & they actually help? How do I get doctors to see the severity & get them busting their asses on a diagnosis& treatment. I’m afraid they’ll treat her like ER doctors do and say we don’t treat chronic pain (which WHAT THE F**K it is being caused by something why don’t they frickin try to find and treat that?!)
Sorry I’m just overwhelmed by nothing helping my twin, no answers being found & her just deteriorating in front of my eyes. I can’t just let that happen. Please give any insight or tips or how to get proper care for my twin.
Post # 2
Has she been tested for Lyme disease?
Post # 3
They won’t admit to a hospital unless there is a really compelling reason. Pain is terrible, but if it’s not life threatening, admission is unlikely. My dad has congestive heart failure and has been sent home while really medically fragile once he’s been determined as stable. Even if they suspect an acute, life-threatening infection, they’ll observe for a short period and release. Hospital admission comes with its own set of risks. My aunt is going home the day of her mastectomy because they consider her risk of contracting a nosocomial infection more serious than being observed after surgery. Hospitals are germy places.
I understand the frustration, but it would be hard to be admitted for testing unless they consider her condition life threatening. Personally, I’d set up a consult with the chronic pain department at Mass General in her situation. The emergency department is treating her like an emergency department treats patients. The problem is that they’re not giving her a referal for a pain clinic or neurologist. She needs comprehensive, multi-disciplinary care.
A friend was treated at Drexel in PA for chronic pain, however, she has a chronic pain condition that has not responded to traditional treatment. She has a diagnosis, she just needed a different avenue for pain management.
Post # 4
I’ll start by saying I’m not from the states so not sure how differently things are run there.
Chronic pain is an incredibly complex issue. It is unrealistic to present to the ER and expect years of chronic pain to be 100% reversed. ER doctors can treat flares of pain but certainly not get someone pain free if they normally live with 6/10 pain.
Over here, chronic pain is managed by anaesthetists who usually deal with acute pain, eg post-op. And for every 50 anaesthetists/acute pain specialists there will only be 1-2 interested in chronic pain. I don’t think there are even any chronic pain bedcards in even the private hospitals here as are usually managed in outpatient clinics. It’s complex not just for physical reasons but also for the psychosocial aspects of the illness which unfortunately (but understandably) many physicians do not want to deal with.
If she’s having fevers, take her to see a doctor. While pain is subjective, having a temperature is not. If you are concerned, stress that she is at a high risk of harm to herself if she is having suicidal thoughts/intent/plan etc. It would be negligent for a doctor to dismiss her issues.
Post # 5
It is really hard for people with chronic, yet undiagnosed sumptoms. Rarely is the emergency room an appropriate place to seek treatment. In the ER, chronic symptoms rarely meet the doctors’ and nurses’ defintion of an emergency.
Let’s start with the basics. Does your sister have a family doctor she trusts? Someone needs to coordinate her doctors visits and ensure that she sees the appropriate speecialists and hs the appropriate tests?
Is there a chronic pain center where she lives? Has she had an assessment there?
Post # 6
I agree with PP that you shouldn’t push for admission, admission comes with its own risks. I had a family member get spaph and sepsis at a great hospital. He can’t walk now, but luckily he lived.
PP have given good suggestions re chronic pain. I’m hoping you can get her some help ASAP.
Post # 7
Does she go to the ER every time or is she seeing a regular doctor? She should start at her PCP and he/she can recommend the proper specialists for her to go to so she can get a proper diagnosis. If you want a specialist that is affiliated with a particular hospital, I’m sure your PCP can work with you on that.
Post # 8
I don’t think an ER is going to help your sister. An ER isn’t really the ideal place to have chronic pain diagnosed and treated — Pushing for admission won’t really help, while being in terrible pain is awful and I’m sure she’s suffering, the ER is moreso geared towards emergencies — saving lives and such. She’s probably quite stable despite her pain.
She’ll need to go to her regular doctor. If she doesn’t have a regular doctor she needs to get one. After being seen by them she will need to be referred to a specialist. They will be much more educated and much more equipped to help get her diagnosed and treated. Her PCP will have much more ideas and options for her than an ER will. If you must go to that particular hospital, your PCP will be able to narrow down the available doctors, but I think if she’s in the amount of pain you claim, being open minded and willing to go somewhere else is her best bet.
Post # 9
A GP can refer your sister to Mass General’s Center for Pain Medicine, or you can go thru their website to get an initial appointment set up. I wouldn’t suggest going to the ER, since it’s a chronic issue. These guys know chronic pain is a thing and since it’s all they do, they shouldn’t be dismissive. Good luck!
Post # 10
Have her talk to her primary care doctor and ask for a referral. It sounds like she needs to see a rheumatologist. She can ask for a referral to one affiliated with Boston hospital if she chooses.
Post # 11
It’s difficult enough to solve unusual medical problems without jumping from person to person. You really need to find someone who likes to solve medical mysteries – sort of a real-life non-pathological “House.” They’re out there – and known as good diagnosticians. Do you know any nurses? Ask them who they would go to. Then give them the time and enough trust to work it out. I’d look for an internist instead of a Family Practice. When you make an appointment tell the scheduler that it is a complex chronic pain problem and will take more time than the quick “lets review your high blood pressure” visit.
She needs someone to sit down with her and ask about all the aches and pains – when and where – and she needs a head to toe physical, and a lot of blood work. Then they can start with maybe we need a CT, MRI, Colonoscopy, Endoscopy, Laparoscopy or whatever. They will likely not come up with an answer immediately, it may take several visits over several weeks/months depending upon how much of a ‘zebra’ the Dx finally ends up being. I don’t know what kind of pain it is or where it’s located, but GI and autoimmune systems can produce baffling symptoms that are hard to pin down.
hope you can find some good recommendations for that diagnostician soon.
ETA: ONce you start working with someone, ask: How long do we wait for these results to come back (then call if you haven’t heard from them by that date). Ask: If this doesn’t give us the answers, what is the next step? If they start to treat with something ask: How long till I should notice a difference? Have someone go with her who can take notes, or just be a second set of ears to listen. Try to ask questions at the time rather than calling back in later … it’s more efficient for you and the office too. Don’t be offended if there is some reference to a psychologist/psychiatrist especially since she is talking about feeling suicidal. Once chronic pain starts depression often follows, and it becomes a cycle. Treating depression (and sometimes some anti-depressants have an effect to help with chronic pain) may make improve the pain. But still, a cause needs to be found for the recurrent fevers. That is not psychological.
Post # 12
Tell her to read up on/get tested for parasites. They can cause her symptoms and frequently go undetected by doctors. Good luck 🙁
Post # 13
I work at a hospital in Boston and agree that the ER is the WRONG place for her. ER docs don’t have time to deal with complex issues–they either admit patients if they need to be in the hospital, or come up with a quick fix. There are many great hospitals here, but the most highly rated are Massachusetts General Hospital or Brigham & Women’s. I agree that a referral to a pain/anesthesia clinic is probably her best bet.
Post # 14
ER doctors don’t generally like handing out painkillers either, from what I undertstand, due to the risk of people who are addicted coming in for a fix/ease of getting addicted.
On top of what PPs said about getting referals to specialists, she should join a support group (tons and tons of online forms) and probably a therapist if she’s not seeing one. I went through tons of testing for GI stuff and for awhile they were looking at a chronic condition, and so I joined a few support forms online and there was absolutly nothing like having someone who /truely/ understood what you were going through. Friends and loved ones can sympathezise, sure, but to know that you are not alone on bad days and that there are others like you is amazing. For instance(TMI warning, I guess, I’m so numb to this stuff now): I could laugh with my best friend that I pooped my pants one day and joke around about it, but online there were hundreds of people who kept extra bags in the car incase it happened to them with spare underwear and pants, who mapped out their daily commute with the closest restrooms, who could relate to my paralyzing embarressment and distress. I had a colonoscopy before my own mother did, and online support groups helped me prep and get through my anxiety about that. My dad would wig out when I was in tons of pain and curled up on the floor, asking if I needed to go to the emergency room, but to Spoonies it was just a rough day.
I hope your sister gets the physical and emotional help she needs.
Post # 15
She needs to see a specialist, rather than get admitted to a hospital. My in-laws are both doctors, and this past summer (we live in Boston, FWIW) DH was in an incredbly, debilitating amount of pain (and had little to no mobility) due to a back issue. We called his parents prior to going to the ER and they said to not even bother. We did end up going to the ER because DH just couldn’t hack it, and the doctor was helpful and kind, but msot unwilling to prescribe heavy pain medicine because of the opiate epidemic in our state (which we expected and assumed would happen). They did prescribe a muscle relaxer which helped, but it wasn’t until he saw an orthopedic specialist on his parent’s referral that things got better. Your sister should absolutely come to Boston – we have so, so many amazing hospitals, doctors and research universities. I almost never get sick with even a cold, but I always feel a little extra secure knowing that I have the best doctors and facilities in the world surrounding me if something ever were to happen. That said, she should see someone specific who deals with pain management at one of the “big” hospitals – MGH, Beth Israel, Brigham & Women’s.