Totally Confused Now: Well, I'm back... - Fibromyalgia Acti...

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Totally Confused Now

Lioslaith profile image
8 Replies

Well, I'm back from my third Occupational Therapy appt. at the hospital and although I'm thrilled to 'get' two months grace before I have to return again rather than the 2 to 3 week schedule previously mentioned. I am totally confused.

I was assessed by a Physiotherapist in December who said that my lower limbs wouldn't get any better as it was a direct result of having these joints under attack day in day out for over 12 years by Rheumatoid Arthritis. That is what is meant by the phrase 'degenerative' disease. So he concentrated on my shoulders which have just began to be affected over the last year or so.

Today I was given instructions by the OT to begin standing and by result walking more so that I can eventually stand/walk for four hours only taking the odd break when pain/exhaustion required!!

She seems to think that building up my stamina with my fatigue and pain symptoms will be totally gained by 'doing more' a bit at a time and as for standing/using my legs they will strengthen as well as I stand more??!!!

So who do I believe?

The physio who said that the damage done to my lower limbs is impossible to reverse and to stand/walk too much would increase my problems and would hasten the degeneration of my limited mobility if put under strain. Or do I believe the OT who seems to think increasing my pain/fatigue intolerance and standing without either my perching stool or my crutches will give me back my mobility allowing me to walk around for four hours if I wanted in the future?

I am totally confused to which therapist is right and which advice to follow!

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Lioslaith
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8 Replies
Rach1977 profile image
Rach1977

Hi, it's great to hear that the NHS installs great faith in us over and over again.

Did you say to the OT that the physio had given you contradictory advice?

OT are there to give assistance in day to day activities, not make assessments as to how your body is working and when and how it will get better. That surely has to be done by a specialist.

This is only my personal opinion however I don't have faith in NHS physios.

Do you see a rheumatologist? What have they said about exercising your lower part of your body??

I would go for a second opinion. Good luck xxx

I agree with Rach1977! I believe that the physio is more apt to give you advice in what to do with your body than the OT who, as Rach says, is there to offer you assistance in day to day activities. Sadly, I do for the most part share Rach's faith in NHS physios. Although, they can be hit and miss! I did have a really good one recently who helped with my plantar fasciititis. HOWEVER, another physio at the same office was absolutely rubbish! I told her I had fibro and she just froze. She then told me that her auntie had it in her shoulder!? I completely lost faith in her. She had no idea how to deal with fibro OR my PF! Fotunately a previous physio that I saw there was still there and I asked to be transferred to her as I had seen her before and she knew me/my body. I didn't want to rat out the other physio and have it cause me difficulties with my treatment although I did anonymously send in a complaint about her!

Anyway, sorry for rambling away. I would get a second opinion Lioslaith! It is your body!

Best wishes!

Annette

gypsycrafter profile image
gypsycrafter

i used to work for the NHS and have lost faith time and time again, however i think (fingers crossed) i have found gold. i would suggest you get the opinion of a professional doctor like a rhumatologist. they are equipped with machinery like xrays and scanners, physios have not got the power to do that. It might help you with the right decision. the last thing you need is to cause unnecessary suffering through differing staff opinions. I do hope you manage to sort this , it must be confusing. soft hugs xxx

Rach1977 profile image
Rach1977

I wish I had lost of money to go private. Even though you get to see the same consultants etc they seem to spend more time with you and give PROPER treatment ( as long as you get a good specialist). They have longer than 10 minutes to spend with you and not restricted by NHS plans and financial constraints!!!!!

I have had enough of the NHS, totally sucks. I have complained of a really painful lower back after an RTC in 1999, it cracked at the time of impact. I thought one would consider an xray, MRI/CT....NO, that would be far to easy. I keep saying I can't stand for too long and my legs give way!!! That will be the numbness......I obviously haven't said the correct key words for them to take notice. I say the only way to relieve the daily pain is to bend forward and sit down. Funnily enough I came across a letter in my GP notes that I requested stating that a physio thought I was suffering from spondylolisthesis. Hey they never followed this up, my current Dr has never mentioned it, let alone seen it.

My research shows that bending forwards releases the compressed spinal cord due to the way my vertebrae may have been sliding.

I SHALL be making a fuss soon and get this sorted. I may not have it, however investigating it is key, not just flipping fobbing me off!!!!

We all get fobbed off......it's not right, but what do we do to fight a corrupt government.

Wow, sorry that was a rant!!!! xxx

Ang01 profile image
Ang01

Hi, doesn't give you much faith in the different specialties does it, I am so scared of hospitals after working in one for ten years, especially as I worked in Medical Personnel and heard about the problems that occured with some doctors. My experience of physio is that they work on the parts of your body affected by illness after diagnosis by a doctor, similarly with OT, they assess what you are able to do following diagnosis. I would defo check this out before you start doing as they suggest to ensure you dont cause yourself further problems. Take care, Lovel angela xx

LindseyMid profile image
LindseyMid

A physio is far more qualified to give advice on physically managing multiple chronic conditions than an OT. It really sounds like the OT did not take into account that you have actual joint damage from RA as well as Fibro.

hi lol if omly that is all i can say how funny is that i went to physio the head one at my local hospital i was with him an hour jus talking and he told me it was awaste of his time and mine to do physio on me it would never help me and he did not see sense it in my case so we had nice chat and off i went written offf funny how they all dothe same training yet they all got different ways of treatment good luck love touyou diddle x

yes he said that fibro was not a good condition to start pulling me about andi would end up in more pain and the muscles would probably never repair themselves as they were gone and my back the bones would not reset so that was a waste of time too love diddle x

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