Feeling let down by doctors

[paw]

Welcome to the site Barbara. When I had physio for my shoulder after surgery I had high co-pays too. To make matters worse, they overworked me and undid a lot of the repair and the shoulder is still damaged. Physical therapy with someone who is not an expert in hypermobility can leave you worse off than when you started.

There are a few things you can do though. The physio clinic I went to offered for $30 a month the opportunity to work out as often as you want. They would not be directly supervising you though. So if you were given a list of exercises and shown how to do them you could go in and keep using the machines and exercise tools on your own. That cost is much less expensive than a gym membership.

Some hotels will sell pool memberships for people who live in the area. You get a key to the pool area and you work on your own. You could call different physical therapy clinics and hotels and see if any of them have a pool you could use that way. It can't hurt to call and ask. I had no idea that was available till after I went through physio.

Maybe you could book one or two sessions with the physio to set up a home exercise program for you. That way they would give you the right exercises and show you how to do them safely. I know you would end up paying, but it might be worth it to help you get stronger.

[ladypythia]

Thanks Paw. I didn't think about the hotels and such. My parents do have a pool, but it's a 40 min drive - not attractive after an 8 hour work day. You've given me some good ideas. Thanks again!

Welcome to the site Barbara. When I had physio for my shoulder after surgery I had high co-pays too. To make matters worse, they overworked me and undid a lot of the repair and the shoulder is still damaged. Physical therapy with someone who is not an expert in hypermobility can leave you worse off than when you started.

There are a few things you can do though. The physio clinic I went to offered for $30 a month the opportunity to work out as often as you want. They would not be directly supervising you though. So if you were given a list of exercises and shown how to do them you could go in and keep using the machines and exercise tools on your own. That cost is much less expensive than a gym membership.

Some hotels will sell pool memberships for people who live in the area. You get a key to the pool area and you work on your own. You could call different physical therapy clinics and hotels and see if any of them have a pool you could use that way. It can't hurt to call and ask. I had no idea that was available till after I went through physio.

Maybe you could book one or two sessions with the physio to set up a home exercise program for you. That way they would give you the right exercises and show you how to do them safely. I know you would end up paying, but it might be worth it to help you get stronger.

[alice-emma-louise]

I'm really lucky in that although most of the GPs at my surgery are incompetent, there is one doctor who really does make up for that, she is amazing! Takes every complaint seriously, is really reassuring, goes out of her way to make you comfortable and if she doesn't know the answer, she refers you to a specialist rather than fobbing you off with some useless "catch all" treatment! Specialist wise I have been lucky to be taken seriously by all of them (both related to HMS and other conditions), the only problem I had was a rheumatologist who was absolutly lovely, but really didn't know a great deal about HMS and as a result gave me little info. I guess there really is a postcode lottery as the healthcare in my area really is fantastic!

Allie

[lillmissy]

I went to my GP today with a letter from my physio saying that he thinks I have HMS and arthritis and should be reffered to a specailist and have blood tests done. my GP said 'no, im not doing that. you don't have arthritis and its more likely you have fybromyalgia and there's no cure or treatment for that, you just have to live with it.' I explained that im in pain every day and he prescribed Paracetemol and Glucosamine (I hope im not breaking any board rules by saying the names of the drugs??) and said to take them for three months and if they don't work by then, that there was nothing he could do.

this doent sound right to me, should i have persisted or should i just 'deal with it'??

[cll]

I can empathise with you there, I asked my GP to refer me to a Rhumey and she did, and I was told i am hyper mobile and I have fibromyalgia and I should just put up with it. I have now be sent to the pain clinic they are helping - maybe you could suggest this option. I am considering asking for a referral to one of the HMS clinics
Hope you resolve things

Claire

[l00pyp0u]

EXCUSE ME

the answer is i dont think so. I was diag arthritic at 26, in knees, and arthritis in spine at 28. he doesn't know for sure, until you have scans and xrays, maybe cameras, inserted. THAT'S FOR STARTERS.

As to the FM, love , it is possible. but as to the medication, I dont know, I recall being diag FM about 14yrs ago, but I was never , and have never been offered meds for it. Probably too late for me anyway.

Blood tests can be done to see if there's inflamation, and not just rh ones, which I had done recently, and mine were all clear, bearing in mind the arthritis, bursitis, SI probs and everythin, and it still came back negative.

Blood tests don't show everything, but they can help with some diagnosis. Bear in mind he may not have wanted to put you through more than you've already been through, You can argue the toss with him if you want, May be better off waiting to see the pain clinic, or HMS clinic, but maybe take the meds anyway, just incase they can help?

Lou

[lil_miffy]

get a different gp. your gp is not qualified to diagnose you with arthritis and really shouldnt diagnose fibromyalgia too. that should be left to a specialist so if your gp thinks you have these then they should refer you for these alone.

[Flora]

I have to agree with all of the statements above. GPs have to be generalists, and a physio is probably better qualified to say if you have hms, as they are trained to test for hypermobility, and see more of it then the GP would. Keep going, and try a different GP maybe. If you do have fibromyalgia you do not have to just live with it. I also have it, and take a low dose of amitryptilene for it. This helps improve quality of sleep and pain control, both of which are more than welcome! there is a lot of information on this medication on the site if you search, there is also a thread for fibro. Mentioning medications is fine, as long as we do not talk about the specific dose. Take care.
Flora

[Sandy L]

A drug called Lyrica (pregabelin) has been approved for fibromyalgia here for at least a couple of years. A new one, acting by a different mechanism, Savella (milnacipran HCl) has been added quite recently, so the notion that nothing can be done about fibromyalgia is off the mark a bit.

Use the archives search to look up the Assertive Method; it often helps deal with problems of this sort.

[l00pyp0u]

Now there you go. Please hun, go somewhere else, get another opinion.

It would seem that I have actually had 2 GOOD GP's one after the other, as I was prescribed ami about 14yrs ago but didn't realise it was for the fibro I just thought it was for depression, but a lot was going on medically around then, so I probably wasn't paying too much attention

Finding A good GP can be hard, but in the long run it is definately worth it.
Having someone who understands, is so important to the problems we experience. You need that support. Someone who doesn't just dismiss you but takes your concerns on board.
Flora, is right, and as we tend to spend so much time with physio's, they do tend to see more hypermobile people than a GP, so they are definately more qualified to diagnose it. If you are banging your head against a brick wall, then try contacting the Physio and explaining what is going on to him. He may be able to offer another alternative, or refer you to someone else.

Now you have the HMS in writting , so to speak, sorry hun, but be prepared to stand up and FIGHT FOR YOUR RIGHT (to party ), sorry a decent gp, and support.

Please consider going somewhere else. Find other GP's who cover your area first, give them a ring, and see If they know anything about HMS, or do a temporary patient visit, and see, how they are with you, then if no joy, look further afield.
Maybe some one here is in the same area, and can suggest a decent GP for you.

take care,

Lou

[jax]

lilmissy,

That's definitely not right! You have the right to be referred to a specialist for Fibromyalgia.
It's actually a very serious condition! It's worth looking into the specialist you want to see - then asking for a referral.
This could be a hypermobility specialist or rheumatologist of your choosing.

Some gps are specializing in fibro now and will prescribe - but saying nothing you can do
about it is not good enough.

Try having a look on some of the fibro sites - also there's a fibro discussion thread on
here. Fibro and hypermobility often go hand in hand.

Like others have said there are drugs that can help, if you can tolerate them, like
the amitrip and poss even seratonin uptake inhibitor to help with pain tolerance.

Also gentle exercise, hydropool, jacuzzi, gentle physio etc.

Good luck - hard enough when you suffering with pain and fatigue - never mind having
to fight for a referral. Please do put it to him or another gp at your surgery.

Jax
xx

[alice-emma-louise]

Personally lilmissy, I think that's disgraceful and I personally would complain about your doctor....but then I'm a pretty outspoken person. At the very least you need to see a different GP and do not give up until you get the referral you need and the action plan to targetting your symptoms that you deserve!!

A

[aninja]

lilmissy

Yes, we do have to live with it and it isnt going to disappear(I asked Prof Bird for a magic pill, which he was not able to offer just yet!), all you are asking for from your gp is help to manage the condition, we all have that right.

I had to change gps cos my old one just said if you are finding it hard to work, play, do daily chores, then don't do it. how long do you want the sicknote for?

I also find it helpful(and good gps, consultants don't mind) if i write down, when my pain is worse, how it feels - describe it, is it stabbing, burning, throbbing etc, what helps to ease it, what makes it worse etc. I had 2 A4 pages when i approached my current gp about seeing Prof Bird, neither my gp or prof bird minded.

I do now have help in trying to manage things a little better.

If you cant get anywhere with your current gp, either change to another or contact PALS - www.pals.nhs.uk - they should be able to help you.

I hope this helps hun

aninja
xx

[Spireite]

If only there was a half-decent GP in the area I could change to. I did ask around when I moved house but everyone said avoid their GP like the plague. I did once try PALS cos of gross dissatisfaction with my previous disinterested GP. They just said you have to take it up with the practice manager. So I rang the practice manager, who had just gone on holiday for 2 weeks and no deputy. Ring back in a fortnight if you can get through. But then unusually I was put through to my useless GP. Normally if you wanted to speak to the useless GP it was a case of try and ring next Tuesday between 10.30 and 11 and the phone would be permanently engaged. When I wasn't planning on speaking to him I was put through. It didn't really do any good though.

It seems to me you have to be your own GP and just use the real GP as an admin service. They just don't want to be bothered.

[Sarah-Mary]

First off, can I just say how appalled I am at this. Your GP sucks.

If you really don't want to try a different GP, is there any chance you could ask your physio to follow it up? He might take it more seriously then, or maybe you could ask to be referred to the hospital for tests instead.