Today i went to the Rhemotologist, it was worth waiting the extra time even though i let him know i was unhappy about waiting it.
Had a full over fibromyalgia "joint" examination.. with a few extras which i assume were hyper-mobility.. sort of.. lifting my arm.. squeezing joints and bones.. does it hurt when i do this.. kinda thing.. he told me i have gone downhill alot since i last saw him, i was already aware of this.. technically fibromyalgia is not sup-post to be degenerative condition but alot of people do go downhill.. ask most of the people who suffer from it.. its just a label they put on it. Also with the hyper-mobility i suppose that doesn't help.
I was all prepared when i saw him came with a page of writing i called "situation summary" which explained what had been going on.. eg physio, medication, General Doctor, Rhemotologist Occupational Therapist etc gave a copy to him... which answered alot of his "questions" which as they do they always ask questions and as a fibro sufferer i remember about 10% of the answers! It also had about test results etc so he could be up to date as it had been 9 months since i had seen him.
I told him about my leg as this was the thing that was worrying me most, he said it was a trapped nerve but as i was in so much pain with it he gave me cortisone injection in the top of my thigh.. he said it should help with the inflammation and pain and would last anytime from 6 weeks to 6 months.. he also gave me one in my right wrist.. my wrist is still hurting a bit from the injection but my thigh seems okay at the moment.. its night time when i am sleeping the actual pain tends to happen most so we will find out tonight if its helping.
I also told him my migraine is still there and is still very bad, he said he will refer me to a "headache doctor" some form of neurologist to see if some form of medication can be found to help it, i am currently on topiramate and it is only helping very very slightly.
I should be going back to see him in 3 months fingers crossed if my appointment isn't canceled.. he asked for one 3 months away and the receptionist said they were full then however she called my Rhemotologist on the phone (in the next office!!) and he said he defiantly wanted to see me in 3 months.. making it sound i was important so i shouldn't get bumped again! so i am on a backup list.. and should get a letter in the post as we couldn't make an appointment there an then.
Thursday, 27 May 2010
Tuesday, 25 May 2010
waiting..
Not much has happened recently i seem to be waiting for things... I am currently waiting for my Rhemology appointment next week and hoping that he is not going to cancel the pain in my leg that i want to see him about is still there and very sharp... it also burns at night and keeps me awake..i also want to speak to him about the hypermobility as i haven't had a chance to since he "diagnosed" me via the Rhemy OT.I had a blood test last week for my thyroid and Vitamin D but the chances are the results wont be in, in time for my Rhemy appointment as it usually takes three weeks.
I am also still waiting for my Working Splints with thumb guards from my Rhemy OT its been about 6 or so weeks now i need to ring her in a week and see how the order is progressing it has taken along time.. i rang her two weeks ago and she said there was no news.. it seems to be rather pathetic really but i cant really blame the Rhemy OT as she has been brilliant to me.
I have been having physiotherapy but it doesnt seem to be helping me that much i have been doing the exercises and they just get me very tired and i dont seem to be getting anywhere after about 4 sessions we have left it at if i want another appointment in the next few months for me to call her, i don't know if i will or not i just seem to be pulling muscles.
I am also waiting for a USB Medical Alert necklace which i ordered online which is coming from the USA, I think this is an amazing idea as you can store all your doctors letters, xray's, scans etc on the USB device and then if you end up being rushed into hospital they can access all the information; this is especially good if you have a condition that isn't that well known. The information is password protected and the necklace is engraved with your basic information eg name, date of birth, emergency phone number. The USB device is password protected and i assume you give the password to your next of kin (eg the person whose emergency phone number is on the device) The website i ordered it from is http://www.universalmedicalid.co.uk/ the only disadvantage because its from the USA it can take anything up to a month!!
The other thing i have bought which is brilliant especially as i have alot of problems with my hands some foam which you can put on cutlery,pens, toothbrushes, paintbrushes, etc etc to help you hold things if you have problems with your grip which is good if you have problems with fibro or arthritis. http://www.livingmadeeasy.org.uk/supplier.php?supplier_id=0000580&product_id=0005522 is where i found it the cheapest.. i bought a NDSi XL and it worked on the pen that came with that and enabled me to be able to play games on the Nintendo DS again! and do painting.. lol i sound like an advert.. but i only want to spread the word of things i have found that have helped me.
I have also got an appointment with wheelchair services as i have asked to see them as i have had problems with my wheelchair; on my current one i have a "soft" back made from material but when i sit in it all day like when i do at the day center i go to i end up with a very sore back and also when my backpack is on the back of my wheelchair if often hits me in the back so we are going to ask if they can replace it. Also my current wheelchair is very wide and we are going to ask if they can get me a smaller one as this one has problems going through doors..
The local fibromyalgia group i have been helping with and attending seems to be moving forward in leaps and bounds they are currently setting up a website although i dont know whether to post it on here as it would show where it is held.. at least it is moving forward though.. yay.
I am also still waiting for my Working Splints with thumb guards from my Rhemy OT its been about 6 or so weeks now i need to ring her in a week and see how the order is progressing it has taken along time.. i rang her two weeks ago and she said there was no news.. it seems to be rather pathetic really but i cant really blame the Rhemy OT as she has been brilliant to me.
I have been having physiotherapy but it doesnt seem to be helping me that much i have been doing the exercises and they just get me very tired and i dont seem to be getting anywhere after about 4 sessions we have left it at if i want another appointment in the next few months for me to call her, i don't know if i will or not i just seem to be pulling muscles.
I am also waiting for a USB Medical Alert necklace which i ordered online which is coming from the USA, I think this is an amazing idea as you can store all your doctors letters, xray's, scans etc on the USB device and then if you end up being rushed into hospital they can access all the information; this is especially good if you have a condition that isn't that well known. The information is password protected and the necklace is engraved with your basic information eg name, date of birth, emergency phone number. The USB device is password protected and i assume you give the password to your next of kin (eg the person whose emergency phone number is on the device) The website i ordered it from is http://www.universalmedicalid.co.uk/ the only disadvantage because its from the USA it can take anything up to a month!!
The other thing i have bought which is brilliant especially as i have alot of problems with my hands some foam which you can put on cutlery,pens, toothbrushes, paintbrushes, etc etc to help you hold things if you have problems with your grip which is good if you have problems with fibro or arthritis. http://www.livingmadeeasy.org.uk/supplier.php?supplier_id=0000580&product_id=0005522 is where i found it the cheapest.. i bought a NDSi XL and it worked on the pen that came with that and enabled me to be able to play games on the Nintendo DS again! and do painting.. lol i sound like an advert.. but i only want to spread the word of things i have found that have helped me.
I have also got an appointment with wheelchair services as i have asked to see them as i have had problems with my wheelchair; on my current one i have a "soft" back made from material but when i sit in it all day like when i do at the day center i go to i end up with a very sore back and also when my backpack is on the back of my wheelchair if often hits me in the back so we are going to ask if they can replace it. Also my current wheelchair is very wide and we are going to ask if they can get me a smaller one as this one has problems going through doors..
The local fibromyalgia group i have been helping with and attending seems to be moving forward in leaps and bounds they are currently setting up a website although i dont know whether to post it on here as it would show where it is held.. at least it is moving forward though.. yay.
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