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Lost my mojo!
Could you experts clarify something for me? All the info on PMR describe the symptoms as being pain and stiffness in shoulder and hip area, always bilateral. What is never mentioned is the fatigue and lack of ' momentum' we all have. Is this because that is a side effect of the steroids and not part
Could you experts clarify something for me? All the info on PMR describe the symptoms as being pain and stiffness in shoulder and hip area, always bilateral. What is never mentioned is the fatigue and lack of ' momentum' we all have. Is this because that is a side effect of the steroids and not part
Hirwaen
in
PMRGCAuk
7 years ago
Ataxia Pancytopaenia
My consultants think I have Ataxia Pancytopaenia and I was just wondering if anyone else had this diagnosis
My consultants think I have Ataxia Pancytopaenia and I was just wondering if anyone else had this diagnosis
hab29
in
Ataxia UK
7 years ago
FORTEO yes or no?
My mds feel I am a strong candidate for FORTEO. Please share your experiences with me on this bone building injection
My mds feel I am a strong candidate for FORTEO. Please share your experiences with me on this bone building injection
EmmaLaura
in
PMRGCAuk
7 years ago
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Cogan's syndrome
My daughter has recently been diagnosed with Cogans and although picked up quickly within 2 weeks of symptoms has suffered hearing loss. Does anyone in the North East see a doctor who has good knowledge of Cogans? Thanks
My daughter has recently been diagnosed with Cogans and although picked up quickly within 2 weeks of symptoms has suffered hearing loss. Does anyone in the North East see a doctor who has good knowledge of Cogans? Thanks
Jandaw
in
Vasculitis UK
7 years ago
Silver ring splints
My rheumatologist is sending me off to see a 'hand therapist' in September. I think in may be an OT, or physio trained person, but this is the title that is on the appointment letter. The things she hopes that they will look at are much like Occupational therapy, or physic tasks, but specifically they
My rheumatologist is sending me off to see a 'hand therapist' in September. I think in may be an OT, or physio trained person, but this is the title that is on the appointment letter. The things she hopes that they will look at are much like Occupational therapy, or physic tasks, but specifically they
cpns
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Dipyridamole
Hello all. I've been doing some reading on Dipyridamole (Persantine in US). Does anyone take this drug and/or have any thoughts on its use in APS? What advantage does it give to APS sufferers? Is it used WITH Coumadin? How about Plavix? Does Dipyridamole have advantages over Plavix or Aspirin
Hello all. I've been doing some reading on Dipyridamole (Persantine in US). Does anyone take this drug and/or have any thoughts on its use in APS? What advantage does it give to APS sufferers? Is it used WITH Coumadin? How about Plavix? Does Dipyridamole have advantages over Plavix or Aspirin
ndstephens49
in
Hughes Syndrome APS Forum
7 years ago
Potassium iodide
When my son and I became suspicious about 2 years ago that we might have an iodine deficiency, we stumbled on Lugol's Solution and took 3 drops of it in our food for a few months. Extensive reading brought me to "Betadine", a potassium iodide solution sold in stores as an anti-biotic for scraps and minor
When my son and I became suspicious about 2 years ago that we might have an iodine deficiency, we stumbled on Lugol's Solution and took 3 drops of it in our food for a few months. Extensive reading brought me to "Betadine", a potassium iodide solution sold in stores as an anti-biotic for scraps and minor
mhackett234
in
Thyroid UK
7 years ago
facet joint L5-S1
I have had this symptom for 14 years got diagnosed in December 2014 by a physiotherapist at holy cross hospital so I now do a exercise regime in a hydrotherapy pool which works as you gain muscle to help with your conditions and now I have found a painkiller that works for me is tramulief sr 100mg twice
I have had this symptom for 14 years got diagnosed in December 2014 by a physiotherapist at holy cross hospital so I now do a exercise regime in a hydrotherapy pool which works as you gain muscle to help with your conditions and now I have found a painkiller that works for me is tramulief sr 100mg twice
wolfdog
in
Pain Concern
7 years ago
Neupro
Good morning all. This week the doc prescribed Neupro for Mike. It's a patch that's changed once a day and may help with rigidity. Wondering if anyone has experience with it? Thought I'd share a pic from our recent trip to FL. It was a struggle but ocean/beach made up for a lot.
Good morning all. This week the doc prescribed Neupro for Mike. It's a patch that's changed once a day and may help with rigidity. Wondering if anyone has experience with it? Thought I'd share a pic from our recent trip to FL. It was a struggle but ocean/beach made up for a lot.
Flemingc
in
PSP Association
7 years ago
Cerebellar syndrome
Was diagnosed with this ten years ago. Viral based cerebellitis, would recover in a year. It didn't. Has got worse over time, and then because of poor balance, had a fall and broke right hip and right shoulder. November 2015. Struggling to avoid becoming bedridden at all costs. Trying to get 1. Proper
Was diagnosed with this ten years ago. Viral based cerebellitis, would recover in a year. It didn't. Has got worse over time, and then because of poor balance, had a fall and broke right hip and right shoulder. November 2015. Struggling to avoid becoming bedridden at all costs. Trying to get 1. Proper
Senoja
in
Ataxia UK
7 years ago
Delusions?
My guy has had PSP for about 5 years. He was dx just a year ago. He is now having very painful delusions about me being unfaithful. I have tried everything to prove it's not true. In addition, he has raised his arm several times as if he were going to hit me. Has anyone else experienced either of these
My guy has had PSP for about 5 years. He was dx just a year ago. He is now having very painful delusions about me being unfaithful. I have tried everything to prove it's not true. In addition, he has raised his arm several times as if he were going to hit me. Has anyone else experienced either of these
Dicampbell
in
PSP Association
7 years ago
Tinnitus v deafness
Folks, There has been times that I have prayed for deafness in my left hear. I have both T and hyperacusis in that ear. Just T in my right ear. I have heard of anecdotal stories where people have had the hearing part of the ear removed rather than listening to the T. I have also heard of anecdotal
Folks, There has been times that I have prayed for deafness in my left hear. I have both T and hyperacusis in that ear. Just T in my right ear. I have heard of anecdotal stories where people have had the hearing part of the ear removed rather than listening to the T. I have also heard of anecdotal
ade-the-pade
in
British Tinnitus Association
7 years ago
Tramadol for Mollie
Mollie the Collie is my beautiful 2 year old..Collie! Diagnosed with hip dysplasia a few months ago she has been receiving medicines which help rebuild the callagen around the joint. From time to time her hip obviously causes her much pain but being the breed she is will not admit it. Vet today put
Mollie the Collie is my beautiful 2 year old..Collie! Diagnosed with hip dysplasia a few months ago she has been receiving medicines which help rebuild the callagen around the joint. From time to time her hip obviously causes her much pain but being the breed she is will not admit it. Vet today put
Bananas5
in
Pain Concern
7 years ago
Relpax and joint damage
Hello I'm 46, female, i have suffered from migraines since i was 10. I have used Relpax 40mg for the last 10 years. In the last years i've noticed after i use Relpax i have some pain in my joints, could be my fingers, knees, ankles... i asked to my primary care doctor and she said that was impossible
Hello I'm 46, female, i have suffered from migraines since i was 10. I have used Relpax 40mg for the last 10 years. In the last years i've noticed after i use Relpax i have some pain in my joints, could be my fingers, knees, ankles... i asked to my primary care doctor and she said that was impossible
anysosa
in
National Migraine Centre
7 years ago
How to cope with negative thoughts
This is a very long article about how to manage stressful thoughts. Many here write about how hopless they are, and how useless they feel. The article is written by Bruce Campbell, and it was meant for patients with fibromyalgia, but I think it can work for PMR and GCA too. http://www.cfidsselfhelp.org
This is a very long article about how to manage stressful thoughts. Many here write about how hopless they are, and how useless they feel. The article is written by Bruce Campbell, and it was meant for patients with fibromyalgia, but I think it can work for PMR and GCA too. http://www.cfidsselfhelp.org
Bittebitt
in
PMRGCAuk
7 years ago
Campaign ITT petition - make your voice count and have your say to improve thyroid treatment
https://tinyurl.com/y7rexgvw This is a Change.org petition for improving thyroid treatment started by our own Kitti1 . The current guidelines are failing people; you, your loved ones and friends. This forum all too clearly illustrates the many reasons how and why; from poor diagnosis to poor testing
https://tinyurl.com/y7rexgvw This is a Change.org petition for improving thyroid treatment started by our own Kitti1 . The current guidelines are failing people; you, your loved ones and friends. This forum all too clearly illustrates the many reasons how and why; from poor diagnosis to poor testing
Hidden
in
Thyroid UK
7 years ago
Idiopathic Neuropathy
I first started with this condition over 10 years ago, it has over the years progressed to the point that I can only walk small distance, but by far the worst aspect is my totally loss of balance, which dramatically affects the forward momentum of walking, and even standing still need something for support
I first started with this condition over 10 years ago, it has over the years progressed to the point that I can only walk small distance, but by far the worst aspect is my totally loss of balance, which dramatically affects the forward momentum of walking, and even standing still need something for support
patjess
in
Pain Concern
7 years ago
Dentist
Morning all, Well I'm off to the dreaded dentist today for this broken tooth fixed. Between my TMJ and fibromyalgia with anxiety in the mix I'm not looking forward to it! Thankfully my sister is coming with me. I'm hoping for no adverse reaction to the injection this time. Hope everyone one is as well
Morning all, Well I'm off to the dreaded dentist today for this broken tooth fixed. Between my TMJ and fibromyalgia with anxiety in the mix I'm not looking forward to it! Thankfully my sister is coming with me. I'm hoping for no adverse reaction to the injection this time. Hope everyone one is as well
gail76
in
Fibromyalgia Action UK
7 years ago
Wheelchairs
I am becoming increasingly unsteady, even with my husbands support, when we go out and I am afraid of falling due to my ataxia; especially if he has to go off for a minute and there's nowhere to sit down. At such times I rely on a walking stick to maintain my balance but it's scary. So the time has come
I am becoming increasingly unsteady, even with my husbands support, when we go out and I am afraid of falling due to my ataxia; especially if he has to go off for a minute and there's nowhere to sit down. At such times I rely on a walking stick to maintain my balance but it's scary. So the time has come
SharonPS
in
Ataxia UK
7 years ago
Feeling Guilty
My Husband was diagnosed with Picks Disease 9 months ago. I am still working full time and feel so guilty about it. I blame me for him talking to himself due to him being on his own. I cant afford to stop working due to husband not working for years due to lots of other health issues. Crohns Disease.
My Husband was diagnosed with Picks Disease 9 months ago. I am still working full time and feel so guilty about it. I blame me for him talking to himself due to him being on his own. I cant afford to stop working due to husband not working for years due to lots of other health issues. Crohns Disease.
Lovethesun
in
Care Community
7 years ago
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