feel so low and down

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feel so low and down

Postby gary15871 » Fri May 03, 2013 11:28 pm

today as been a day from hell tired hurting usual day for most of us started with an appointment with rheumatology 3 yrs. ago diagnosed with ankylosing spondylitis and fibro approx. 12 months ago on top of that well I had 2 previous trials on anti tnf drugs and have been waiting for funding for a 3rd trial which I have been turned down for also they are going to stop the steroids I have been on for last 12 months prior to starting to take these steroids I was in so much pain and stiffness even trying to lay down in bed at night would have me in tears after 3 yrs of regular appointments they told me today nothing more they can do and I will be referred to pain management and im left wondering why all the yrs. I did work paying national insurance for medical needs totally waste of time does any one know of natural remedies I could try to ease the pain im wheel chair user full time with severe mussel waste to quads and calf mussels where I've been unable to walk and exercise over the last 3 yrs.
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Re: feel so low and down

Postby fibro-lu » Sat May 04, 2013 6:20 am

sorry to hear Gary,
no idea what to suggest but wanted to acknowledge that you are listened to
there are some wheel chair users on site who might have some suggestions
all the best
Lu
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Re: feel so low and down

Postby *Lisa* » Sat May 04, 2013 12:06 pm

My worst symptom is severe stiffness all over and i have a physio who comes out regularly to work on me. Without her i wouldnt be able to move at all.
Have you tried any physiotherapy? Pain clinic should be able to refer you. Mind you saying that physios dont tend to do hands on treatment now on NHS so for me to get proper care and treatment i pay privatly, i have no choice.

There is also acupucture / deep tissue massage / hydrotherapy that can help stiffness.

I think you can get acupuncture / hydrotherapy on NHS again from pain clinic referal.

Im not sure what home remedies help stiffness, has your GP looked into a muscle relaxant. One that is good and which was perscribed by the professor himself was clonzapam, again pain clinic should be able to help you there as they are licensed to perscribe more medications then your GP

I find anti-inflammitries help a little of the stiffness also.

:goodluck1:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: feel so low and down

Postby painprincess1 » Sat May 04, 2013 7:10 pm

awww darling im so sorry for you, so many ppl here will know what your going through. and im sure the last post would be worth finding out about .also have u tried changing your dr .my friend have AR and they give her a cancer drug. im sure there more they can try for u u must not give up keep pushing for more help xxxx
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Re: feel so low and down

Postby anonymouse » Sun May 05, 2013 11:01 am

From a medical point of view have you had an MRI on the spine for ankylosing spondylitis. It can cause all sorts of central sensitisation issues. I'm hoping you have had an MRI and have been reviewed by a Neurologist to see what is going on round your nerves and what pressure is present and if its a Surgical Intervention Case?

Its just a thought. Otherwise Physio could help depending on the person. It was so valuable to me at one stage before I got so bad I couldn't afford it any more. Unfortunately I found NHS Physios were just looking to discharge and people like us need permanent physio and unless you pay they are not often likely to help. Saying this you know what the NHS is like and you may get far better treatment in your area. I'm not familiar with the medication around this condition but it might be worth trial and error on the fibro drugs if there is nothing else happening medically like trials etc.

Other than that I wish you all the best living with your pain, its not nice but there is a forum of people here in the same boat just about.

Kindest Regards
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Re: feel so low and down

Postby gary15871 » Sun May 05, 2013 7:54 pm

anonymouse wrote:From a medical point of view have you had an MRI on the spine for ankylosing spondylitis. It can cause all sorts of central sensitisation issues. I'm hoping you have had an MRI and have been reviewed by a Neurologist to see what is going on round your nerves and what pressure is present and if its a Surgical Intervention Case?

Its just a thought. Otherwise Physio could help depending on the person. It was so valuable to me at one stage before I got so bad I couldn't afford it any more. Unfortunately I found NHS Physios were just looking to discharge and people like us need permanent physio and unless you pay they are not often likely to help. Saying this you know what the NHS is like and you may get far better treatment in your area. I'm not familiar with the medication around this condition but it might be worth trial and error on the fibro drugs if there is nothing else happening medically like trials etc.

Other than that I wish you all the best living with your pain, its not nice but there is a forum of people here in the same boat just about.

Kindest Regards
Anonymouse

yes mri bk in 2010 and a nuclear bone scan in 2012 showing very active arthritis in spine as far a medical goes now im on my own so will do as much research as I can find out what's good and not by trial and error trying to now focus brain to work on things I can do and try ignore things I cant, no ideas at this time how things are going to pan out its just going to be one day at a time no chance making plans as no idea how I will be from one day to next they also said no surgery would be considered until im at least 60 yrs old and as im only 42 and the surgery will only last 10 yrs I could live to 70's and would need 3 lots and that's too expensive
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Re: feel so low and down

Postby gary15871 » Sun May 05, 2013 7:59 pm

*Lisa* wrote:My worst symptom is severe stiffness all over and i have a physio who comes out regularly to work on me. Without her i wouldnt be able to move at all.
Have you tried any physiotherapy? Pain clinic should be able to refer you. Mind you saying that physios dont tend to do hands on treatment now on NHS so for me to get proper care and treatment i pay privatly, i have no choice.

There is also acupucture / deep tissue massage / hydrotherapy that can help stiffness.

I think you can get acupuncture / hydrotherapy on NHS again from pain clinic referal.

Im not sure what home remedies help stiffness, has your GP looked into a muscle relaxant. One that is good and which was perscribed by the professor himself was clonzapam, again pain clinic should be able to help you there as they are licensed to perscribe more medications then your GP

I find anti-inflammitries help a little of the stiffness also.

:goodluck1:

I use meloxicam which is an anti imflammitries for ankylosing spondylitis
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