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Re: Tired of my doctors and my health

@gina-RO same!! Such a good movie..

And same, but at least it gives me something to laugh at. Smiley Happy

 

And thank you!! I'll check that out and see if it'll be useful in some way.

Re: Tired of my doctors and my health

Hi @Tiny_leaf! Sorry I haven't been online for the last couple of days. I feel so bad for you having to go through all this pain with seemingly no way out. It's very frustrating when it takes so long just to get answers and even then, sometimes the doctors don't know what's wrong. Chronic pain stinks! But it helps to remember that most people, especially young people, recover from it. Even if the pain always ends up being present, it usually decreases eventually and young people usually end up being able to do all the things they want to do without their pain getting in the way.

I think it could be worthwhile to get another opinion. Are you able to ask your doctor for a referral to a pain specialist or pain clinic? They might have some ideas. We found it most useful when the medications the pain specialist prescribed were used in conjunction with physiotherapy so a pain clinic could be a good idea because the whole team can usually work together. You might be able to go as an outpatient on some days of the week depending on which hospital it is.

Some hospitals use hydrotherapy pools for their pain clinics. I think swimming could be a good option for you as it is usually less painful than walking and you might be able to move around better in the water. My sister had a good exercise physiologist once who would meet with her in a local pool and show her how to do water exercises. They helped her more than walking or putting weight on her legs. Being in a spa with bubbles going onto your legs might also help 'retrain' the nerves to not experience pain with ordinary touch or stimuli. She also found a special anti-gravity treadmill really helpful because it lessened the pressure and load on her legs so she could walk unaided for long periods while she was on it and they could gradually change the settings to make it harder for her. There aren't many of these around though.

Pain clinics usually also teach you ways to cope with the pain. Coping strategies can sometimes help because they might alter the pain signals, hopefully making them less.

I hope you can feel better Heart Hang in there!

Re: Tired of my doctors and my health

Hi @WheresMySquishy, it's good to hear from you again! Smiley Happy

 

Half the problem is that my gp thinks that I'm too dumb to be able to tell the difference between normal muscle tear pain that allows for muscle pain, and "strings" of pain running down each leg. So I've been told that I'm just not exercising enough.

 

Anyway I've got a list of like 45 different conditions that have even the slightest chance of being the issue.

If nothing else I'll go through the whole list with him item by item until we narrow it down.

 

If I make no progress though I'll ask about a pain clinic like you and @gina-RO suggested.

 

And thank you.

Re: Tired of my doctors and my health

@WheresMySquishy also, I saw your post about what happened with the ambulance crew (I'm so angry for you guys, that was so unprofessional).. Has everything been sorted out after that?

Re: Tired of my doctors and my health

It's good to be back online. Smiley Happy

We ended up telling the hospital that we would not try to take my sister to the hospital by ambulance again until she is properly admitted as an inpatient. It's a shame because we really needed that appointment and the specialist refuses to have a meeting with her over Skype or at home. We were thinking of making a complaint about the patient transfer service because they were so incompetent. The equipment they brought in to transfer her was broken and needed servicing as well! Smiley Mad But luckily we were able to since speak to one of the other doctors and some other staff over a Skype meeting, which was good because she has been getting some new symptoms that they were able to see live. I think the stress of the ambulance situation contributed to the new symptoms because she wasn't getting them before. I'm hoping that some other people from the hospital come and see her soon so that we know how to manage her symptoms at home until she gets admitted. It still makes me angry how long it has taken her to be treated and how many times they've delayed her treatment because the worse off she will be but it's out of our hands.

Have you read about the different types of pain? For example, pain caused by different processes can sometimes feel different to each other, especially nerve pain. Are you able to ask your doctor to rule out nerve pain or referred pain? It could be an option to have a nerve assessment or a back assessment. Even if the tests end up normal, that's a good thing because it could mean that the problem is not a sign of a serious disease and can be reversed. I think exercise can help but it usually has to be graded and not done all at once. I think a good physiotherapist with experience in that particular problem could be able to help with making sure that you don't overdue it. Usually, they recommend that you stop once you do start getting a lot of pain with a particular exercise.

Re: Tired of my doctors and my health

Ugh!!! Smiley Mad That's definitely worth writing to them about. Just pour all the rage into an email and ask how they're planning to compensate you.

Worst case scenario is that they ignore you, best case is you get an apology and compensation that you can use to undo their mess a bit.

But the manager-y people do need to know that is going on I think...

 

And yes, I have. I injured my tailbone when I was younger, it took over a year to stop randomly hurting. I wouldn't be surprised if I'd somehow damaged the nerves running down my legs, or if my scoliosis was affecting something.

But yeah, nerve pain would make a lot of sense since the lines that the pain runs down don't match up to my bones or muscles, but I think match up with my nerves. My half-educated guess would be that the pain's either neurological or psychological, followed by musculoskeletal pain (I avoided human biology so that I wouldn't have to learn these words Smiley Frustrated).

Re: Tired of my doctors and my health

Yeah, I was really angry! It was a big headache. They were totally hopeless compared to the people who transferred her from the house to the ambulance before using the same equipment. It's crazy how they sent us people who had not been trained in the use of the equipment and weren't equipped for the job despite knowing what my sister needs from past experiences. It's pretty safe once the person is strapped in and meant to be operated by two people but four people decided at the last minute that oops, they were too scared to do it. Apparently they were concerned that the transfer would be too fast but that's not how the equipment works. Whenever we've done it before, it's always been a slow, gradual transfer. We could have done it ourselves! The problem is that she has trouble getting in and out of a normal car so we have to book with a patient transfer service. I'm also angry that they came so late and apparently 'forgot' about us when they should have been ready as we booked well in advance of the appointment. I hope that we get more competent people when she actually gets admitted. At least it won't be as much of a problem if they waste our time again because she can most likely come any time on the day of the admission. We'll definitely be very firm with them and demand that they do a better job next time. I think some ambulance crews are good and some are just really bad.

Wow, that's really bad that your tailbone took so long to heal. Smiley Sad That must have been so painful. I have had nerve pain and it sometimes felt like 'lines' of pain, electric shocks or tightness down the limb but that's just my experience. Sometimes I get pins and needles, numbness and tingling too. It didn't show up on an ultrasound but my physios would kind of put me into certain positions to bring about my symptoms or put pressure or resistance on the nerves with their hands to test which nerves were affected. I have heard of some people getting nerve studies but they don't always show anything abnormal according to one of my physios. Have your doctors suggested any tests like these?

Re: Tired of my doctors and my health

@WheresMySquishy grrrrr.... they must've lost their brains sometime on the way to your house..

Have you looked at a maxi taxi at all? I don't know if that'd be gentle enough, but I do know that my grandfather (who can't move much and needs a stretcher/ wheeled bed to be moved) was able to go from a nursing home to his house and back again in one of them.

 

And yup.. tailbone injuries are not fun.. I think I may have broken/ fractured it but you can't exactly put a cast on it so I just had to wait for it to get better.

And I can see how that test would work, it's definitely worth a try. All that he's suggested so far was a blood test....

Re: Tired of my doctors and my health

@Tiny_leaf  Hahaha probably.
We have been able to get her into a maxi taxi a couple of times using our own hired equipment and wheelchair with leg rests and it went well. Getting back into the house can be harder than going out because we have to push or carry her up some stairs but we were able to manage with the help of our extended family and friends. I think it would be a better option than waiting on an ambulance crew. They also came on time.

Ouch! Smiley Sad I sometimes get muscle spasms around that area and they're apparently harmless, but so painful! It must have really hurt to sit down!
In my experience, doctors usually suggest diagnostic imaging if the pain has continued for a long time, just to rule out other possibilities. You could ask him for a referral for one as well. I can't believe all he's done is a blood test given the amount of time you've been in pain! Smiley Mad

Re: Tired of my doctors and my health

@WheresMySquishy Stairs would make it harder..

The first time we tried to use a maxi taxi for granddad went less than brilliantly.. it was Christmas, so most maxi taxis were busy, so we organised one weeks in advance. The driver just.. didn't show up, then called grandma saying he'd gotten a private (and therefore better paying) job. Smiley Mad

Fortunately another driver from a different company offered to fit him in, even though he was really busy, so everything went okay in the end.

 

And it hurt so much... and lets not even talk about trying to ride a bike....

My next appointment will be me explaining to him that him doing nothing is causing me issues and that if he doesn't do his job or refer me to someone who can I won't be seeing him anymore.