Physio?

[maye1]

Has anyone here seen a physio for mobility issues? Did you need to find one with experience with AI/Lupus?

Not having much luck finding one with that experience; wondering if it exists.

I booked in at a clinic for patients with more complex issues and practitioners look experienced and it’s comprehensive with physiatry etc but I found it odd that receptionist said none specialize in AI and she hadn’t heard that Lupus can affect mobility...?

The appointment is in one month. Wait a month or keep shopping?

Any experiences - good or bad - please share. Happy to spend money on something that will help but can’t afford to waste money.

Thanks

[Penguintaz]

Hi Maye

I have not had physio but I used to work at an osteopath (expert in joints 'n mucles).

There was a lady who went there who had Sle and they also gave me a couple sessions while I worked there.

They will basically move you/ stretch you and ask if it hurts or is tight. Sometimes you have to hold it if it hurts but they won't push you. Then you get some excersises you are told to do! I'm not sure if prices but I know the owners of the osteopath are very friendly and one is the head osteopath who is very helpful!

They don't have expertise in SLE but do know it can affect joints as they saw me and the other lady.

Hope this helps a little? X

[maye1 in reply to Penguintaz]

Hey Penguintaz,

Yes, that’s a helpful tip. Did the exercises help?

[Penguintaz in reply to maye1]

Yeah they did help

At the time I had a trapped nerve and it was very helpful, don't do them anymore though.

[maye1 in reply to Penguintaz]

Glad they helped. Thanks for the input!

[whisperit]

I've been seen by a lot of physios over recent years. First for standard low back pain, then for rehab following a broken femur, then for the "fibromyalgia" that I may have developed since my UCTD diagnosis. I've seen both NHS and private practitioners.

There seem to have been a few consistent differences 1. the more experienced physios nearly always seemed to have a wider repertoire of exercises - the newbies seemed to stick to a smaller and more stereotyped range 2. Physios in the NHS will not do massage or manipulation - but some in private practice will 3. most physios have seemed to be jacks-of-all-trades rather than have wider clinical knowledge of specific conditions

My best experience was with a senior physio who practised in both the NHS and privately - I saw her privately, and she was able to some massage as well as the usual exercises. (I've also seen some private masseurs who were not qualified physios - none of them were as good).

My only other tip is to get yourself in a hydrotherapy pool! Cures everything - for 10 minutes anyway! x

[maye1 in reply to whisperit]

Hi Whisperit,

Thanks for sharing your experience with PT. I agree about seasoned practitioners (in all health areas) - newbies tend to be more enthusiastic but not helpful if they get you there faster but in the wrong direction.

Had to google hydrotherapy - did you use that for pain or mobility?

[whisperit in reply to maye1]

Both - in a warm pool, you can mobilise your painful joints much more easily, so you do your physio exercises much more effectively. The warmth is soothing too x

[maye1 in reply to whisperit]

Huh. Very cool. I’ll look into. Thanks!

[Ladyuponthelake in reply to whisperit]

In previoys years I was an aromatherapist including massage and eoils. A friend of mine was a Sports therapist and she said the training is a world apart. I wonder if a sports therapist would be helpful? They know a lot about the body. Unfortunately my friend moved. Possibility?

🌻☉😎

[maye1 in reply to Ladyuponthelake]

Hey thanks for the input. The PT I saw yesterday works in sports therapy. Or did you mean a Dr in sports therapy?

[Ladyuponthelake in reply to maye1]

Yes, PT or anyone with sports therapy. Maybe just another avenue to look at.

I would love to see one today. My neck is out of place/sublexed in two places. For me the neck is the worst. And to add to it my neck brace is in storage!

Good Luck!!!

🌻🌻🌻

[AgedCrone]

If you are in England you can self refer yourself for Physiotherapy.

You fill in quite a comprehensive form, & send it in to the address on the form. ( I seem to remember there was a choice of hospitals)

I emphasised my RD problems on this form.

I was given an appointment with a really knowledgeable physiotherapist who had worked in rheumatology & turned out to be extremely helpful.

Over the years I have seen many Private physios, but this chap on the NHS has been the best yet.

[maye1 in reply to AgedCrone]

That’s encouraging to hear. Thanks for letting me know.

It’s private where I live so a month is a long wait. Decided to keep that appt and see someone else in the meantime. I need to move more -

[AgedCrone in reply to maye1]

Go on line & find the form....I think I just Googled " self referral for NHS Physiotherapy".

The form asks if you have told your GP.....I said,''No' & still got seen ..in fact I had to wait a month because I couldn't make the first date they gave me...I think that was after a couple of weeks....guess it will depend on how many physios are available at your local hospital.

Well worth it though to save,in my case , £50 a treatment!

[maye1 in reply to AgedCrone]

Hi AC,

Thanks for the tips. I live in Canada. Just back now from an appt with one - she used electro stimulation - can’t remember name, not TENS - she she said it can help heal herniated discs. She dry needled. Gave me some exercises. I’ll know better over the next few days if the treatment today helped.

And as luck would have it - the “specialized” PT had a cancellation and I’ve been moved up to Friday. I’m hoping that the connections that clinic has get me faster treatment in the healthcare system. ie my “urgent” emg is scheduled for November! No option to pay privately for an emg. And I believe having more objective data speeds up referrals because the question is - why do I have herniated disks... (I think we know the answer)

[Ladyuponthelake in reply to maye1]

I'm from the states and moved back for a year and it happened to be when disc and Sacroiliacs started acting up and Thyroid problems diagnosed. Anyways I went to physio and they used electrodes. I also had one physio just look at me standing and reached his hand around and pushed on an area of my back and asked if it was the area most painful, just amazing how it was pinpointed by looking how I was standing. I then had spinal cord finger massage, incredible, strange, actual invasive feeling to have your spinal cord massaged/manipulated. But have never had anything but exercises here. Not that the "US is better" just haven't been lucky enough to meet someone as knowledgeable. The man was incredible and had great knowledge of the body. That's what we need. Not sure how to search. Again maybe a sports therapist could be of help.

🌻☉😎

[Hidden]

Hi. I’m in Scotland and see a physio just now for arthritis in my knee. I don’t think she is making much difference although she’s apparently Rheumatology trained.

She is experienced and was thorough in her initial investigations. But I don’t really like her much - she’s very humourless! She says I need a rolator and that I have foot drop and that all my mobility issues are neurological so has referred me on to neuro physio. She just concentrates on the arthritis in my knee whereas I feel everything is interconnected and a physio should be able to join it all up a bit at least.

Unfortunately we found that I’m in the wrong postcode area for neuro physio in my hospital so now waiting for new referral to go though. Could be a long wait although a gp said he’d try and organise it urgently as I’m losing so much power and grip it’s silly!

When I was previously diagnosed with RA I lived in a different area and immediately qualified for physio and OT. The physio there was just general but really helpful and happy to research things for me.

She made me splints and massaged me and saved my fingers and wrists from fusing. This was in a remote island area. Now the new one is in a big teaching hospital and seems to find me difficult. She keeps telling me that nothing is ever straightforward with me which annoys me because at least some things are straight forward such as wear and tear! X

[maye1 in reply to Hidden]

Crossing my fingers for you that your GP can speed up neuro-physio referral🤞.

I don’t think any patient is straightforward - no one presents like a textbook case. I’d try not to pay her comments much mind..

[Hidden in reply to maye1]

I haven’t really taken much of what she has said to heart - it just irritates me a bit because of the way she looked at me. My old island physio would have listened, examined and told me what her thoughts were or admitted to being out of her depth. But this one just said everything was too complex with me and I must see my GP. Fair enough and I did that and just had my gynae tests yesterday. But somehow she makes me feel so awkward when, really, I’m not?

As you say, we are all complex - so I didn’t like her implying I was freakishly so. She hasn’t yet done anything to improve my physical health as the last one did. And yet she is apparently trained in working with rheumatic diseases and mine isn’t that rare!

So I think you need someone who is confident because a lot of problems we have are actually very similar to those experienced by people with RA and other types of inflammatory arthritis, or even osteoarthritis.

[Ladyuponthelake in reply to Hidden]

Hi TT,

They need to look and treat the whole body and mind, not just the area that has been referred. It's quite irritating and nieve not to listen to the body and the patient. And we are complicated, but that should excite anyone in the medical profession, find out what's the base cause and how they can help. Some things are straight forward but what's is causing it? That's the question they should be asking and treat the whole problem. But a knee is a knee, come on lets be honest.

I just saw my Rhuematologist but it was only concerning low bone density therefore no further discussion was allowed. Still waiting for new referral for tests that Dr Hakim has requested. Neurologist was only for Migraines and that's the least of the issues to be addressed. My GP laughed when I told her that consultants or therapist will only discuss what's on referral letter.

Be well!

🌻☉😎

[maye1]

Ok, thanks for the input. Yeah it sounds like she’s not qualified and flipping to you being “complex”. I really appreciate it when someone doesn’t know and just says so. Egos! You’re due for a good PT and it’s good that you’ve taken the initiative to find a better one. Hope it all comes together very soon!