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The UKFibromyalgia Forums • View topic - Rheumatologist report...confused!



Rheumatologist report...confused!

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Rheumatologist report...confused!

Postby Picklepudding » Wed May 29, 2013 12:49 pm

Today I've received the copy of the letter that has been sent to my GP and I'm really confused! My main pain is in my hip. The report says that I have Vitamin D deficiency, partial sacralisation of L5/S1 on the left (although he told me it was both sides) and minimal osteoarthritis and degenerative changes in both hips...yet it says that he has no doubt that my symptoms are due to fibro. I have other joint pains but the only joint that was xrayed was my hip.

My confusion is, wouldn't osteoarthritis in my hips (albeit minimum) cause the hip pain that I'm suffering? And it offers no suggestion of any treatment for that (I don't actually know whether there is any treatment).

Again, the letter refers to 'the importance of a regular graded aerobic home exercise programme'. This fills me with dread. A day of slow strolling around a quite small zoo left me almost unable to walk that evening and the next day. How am I supposed to undertake regular exercise when it leaves me in absolute agony?

It is quite upsetting that telling me to do the one thing that leaves me in agony is the only real suggestion that they've got for me.

My Florida holiday is 2.5 months away. I can't even walk around a small zoo...how the heck am I going to walk around Disney World for 2 weeks? I don't want to resort to a wheelchair so I'm hoping that the GP can give me some mighty strong painkillers!
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Re: Rheumatologist report...confused!

Postby FluppyPuffy » Wed May 29, 2013 2:41 pm



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Re: Rheumatologist report...confused!

Postby painprincess1 » Wed May 29, 2013 3:33 pm

well i have the same as u but in my back. OA can give pain when its bad.but fibro will be the offender.u see any pain u have now will be worse due to the fibro.your brain is telling your body your in more pain then u are . i understand to about walking some days i can do a good hour and a half other days i cant get out the house.i do house work everyday i have a baby so i have to. and for me anyway i no if i didnt move even when i could cry from pain id be worse off.so if u cant do the exercise programme dont. potter about in the house just moving will do wonders if u do it everyday. its a battle of wills with fibro . xxxxxxxxxxxxx
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Re: Rheumatologist report...confused!

Postby whoami » Wed May 29, 2013 4:01 pm

Picklepudding......the report makes total sense to me. I have degeneration in my back, hips, knees along with fibro. OA n is another issue.

I agree with all fluffypuffy had to say,

The treatment for all conditions is about the same with the difference of a few meds for the fibro.
Gentle excersise can do wonders and I mean gentle and slow. It will seem like you are doing nothing,
for excercises are very mild. You actually are already doing some in basic living. Getting dressed,
Brushing hair, putting on socks and shoes are all mild stretching.

My Dr told me that the only other treatment for OA and the degenerative hips, knees and back would be
surgery. However not until the joints can barely move and I feel I am ready for it. All of these
conditions except fibro are a normal part of ageing, only for some it starts earlier.

When on holidays take advantage of the walkers and wheelchairs that will be available. You will enjoy it
So much more than if you are on stronger medication than normal.

Talk to your Dr to help you with the report and discuss your trip. Try to relax hun, you will have a great
Time in Florida.
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Re: Rheumatologist report...confused!

Postby Picklepudding » Wed May 29, 2013 4:06 pm

Thanks for your replies. The thing is, the rheumy said that I need to be doing aerobic exercise that is enough to get me out of breath...that sounds like quite strenuous exercise to me and although I may be able to do it I know I'll suffer for it the next day!
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Re: Rheumatologist report...confused!

Postby whoami » Wed May 29, 2013 4:57 pm

Paula......there are many levels of aerobic exercises. We usually think of all the jumping and bouncing around, LOL

I can relate to how you are feeling. The fear of "payback" can sometimes hold us back....it sure did me earlier on. I was petrified to do anything. You certainly will not be asked or expected to do anything beyond your abilities. It sometimes helps to focus on what you may be able to do, even if it isn't much. Slowlyi it will help. You will maybe like me reach a point where I just can't do anything more. That is ok as long as you push yourself to that point.

You will hurt a bit after trying something new, your body isn't used to doing it. Try to think on the now when you are exercising, not on tomorrow. If you stress yourself out before you try anything you won't be able to do anything at all.

Try not to worry about something that hasn't happened yet. Give it a chance and see if you benefit even a little. I really hear in your words your fear. Let us know when you have been to your GP and his opinion...after all he his your main care giver. Xx
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Re: Rheumatologist report...confused!

Postby Picklepudding » Wed May 29, 2013 5:19 pm

Thanks for your advice...now I have the letter I will be making an appointment to see my GP so will let you know what he says. I'm not sure about his knowledge of fibro so I'm keeping my fingers crossed!

It's good to hear that aerobic exercise doesn't necessarily mean running on a treadmill!!! When he said 'enough to get you out of breath' I just couldn't imagine that it meant anything that wasn't strenuous. I'm new to all of this so you're right, I am frightened and am panicking about doing anything that will make me feel worse. I try to do things that make me feel better, and exercise is not one of those things!

It's hard to get your head around the idea that doing something that causes you so much pain can actually be beneficial!
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Re: Rheumatologist report...confused!

Postby lolo73 » Wed May 29, 2013 9:01 pm

Paula, other than the medical points which a lot of good advice has been given already, I wanted to pick up on the point about Disney world. I went last June (I think we may have discussed this before BTW) and the walking is flat but with the heat and the fact it can be upto 10 miles a day I Would seriously consider a wheelchair or scooter just to get to each area of the parks, then you can park it up and walk around that area and then get back in and be pushed to the next area. I did manage to get around but if it were now I know I would never manage and despite not using a wheelchair in this country I think I would be tempted to get one for WDW. It is a reflection on how huge each of the 4 parks are rather than a reflection on how poorly you are. Kids are usually wheeled around until they are 8 because of the huge distances, you will get more from your once in a lifetime holiday if you can sit back and not worry too much about your mobility. The other option is planning your rides very very carefully, but it might not work just like that because of virtual queueing etc x
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Re: Rheumatologist report...confused!

Postby Picklepudding » Wed May 29, 2013 9:07 pm

I'm certainly keeping the option open. My husband is already saying that he thinks he'll be pushing me around as he sees how much I struggle after a little bit of exercise. I just don't want to have to admit that I'm not capable of walking by myself. We've been planning this trip for 18 months and getting round in a wheelchair wasn't part of the plan!

I've looked it up and wheelchairs can be hired daily, so I may have to take each day as it comes x
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
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