GCA :: Headache, Jaw Claudication, Facial Edema, Neck/shoulder Pain
Aug 8, 2015
I was diagnosed with GCA June 29 and put on 50 mg prednisone. Most symptoms (awful headache, jaw claudication, facial edema, neck/shoulder pain, fever, dry cough, ESR 41, CRP 8.9) resolved. I am now on 40 mg prednisone, but continue to have fatigue, mild fever in afternoons, and weakness. Some days I feel almost back to normal, but then I relapse into the fatigue and mild fevers. Is this just what GCA feels like or should I be feeling better? My jaw is also still messed up and feels as if my bite is off. I read about flares, but not as much about the day to day life with GCA while waiting for it to resolve.
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I have been on 100 mg once or twice a day for a long time, originally after a foot operation. Advised to keep on, to help arthritis pain and after effects of hip operations etc. The dose was raised to 300 mg at night and 100 mg twice a day. I always feel rather odd and have muscular convulsions over a long time, before the dose increased. Currently have shoulder aches and stiff neck with headache, put down as tension. Has anyone had similar problems, could it be the gabapentin, - so difficult to tell?
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Has anyone else experienced weekly headaches that just seem to last no matter how much sleep you get or water you drink? I also have neck pain in which I have already seen both chiropractor and physical therapist for. When I have these headaches, I feel pressure behind my ways so intense I can't stand bright lights. On top of all this I am dizzy, however, my balance is totally fine. I have already been to an ENT specialist and had an MRI, etc. Only thing I haven't moved onto is a neurologist because I already am racking up my medical bills and yes I have health insurance but a crappy one at that! Please help. Has anyone else been experiencing this and if so, what did you do to rid it?
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I have been suffering from nerve pain that ran down my left arm and shoulder and fingers from a bulging disc in the C-5- C-6 so i had been taking oxycodone 10-325 but when we decided to do surgery we cut that down to oxycodone 5/325 since that is what the surgeon would be giving me after surgery so i said okay no problem. I had surgery on 2/26 of this year, But after surgery come to find out he dropped me to a hydrocodone 7.5/325 and can't understand why the 7.5 hydro's weren't working to take away the pain. I had been having a lil bit of pain on the right shoulder before surgery, but nothing like what i had been having in the left so the surgeon side well "let's hope this will fix this side too" well it didn't. In fact it made the right side worse, I now feel like i have a hot knife twisting at the base of my neck whenever i turn my neck to the right or left, which in turn runs down into my shoulder blades and into my right shoulder which makes my shoulder feel like someone it trying to tear my shoulder off at the cuff along with weakness in my right arm which i never had before .. I have also started to notice a tingling in my right pinky finger and ring finger. I have told him over and over about this but all he does is get the X-rays and says the fusion is looking fine. and my primary can't do anything since he told her he would treat my pain for 6 weeks and he is refusing to do anything about the pain what so ever. i am to my wits end and any advice would be welcomed.
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I'm not on any meds for my MAV, first because the ENt wanted me to take topamax and it scared me to death to try it, when I saw him 2 weeks ago he said he wasn't going to give me any meds cause I seem to be doing better. I started with this headache on saturday night and still have it today, its like a tension type headache with pain in the shoulders and neck, but the pain is mostly in the front across the forehead going to each side, but with it comes the feeling of moving when I'm sitting or standing. Is this indicative of MAV? I feel like a buoy in the water and sometimes a sinking feeling, yesterday it was a falling feeling. I'm now wondering if I should try some meds. I also told the ENT I was seeing a psychologist this week and maybe he thought because of my anxiety about all this she might want to start meds. She works with a psychiatrist I believe so could probably get meds. she was also I physicians assistant for 20 years at a neurologist office, so I'm hoping she will understand all this.
So my question is, do you have headaches with neck pain and shoulder pain on both sides? Is this part of MAV? Does the dizziness sensations feel different or changing? Do everyone here take meds for this? Is there any meds that help with dizziness, headache and anxiety at the same time? Do you have headache and dizziness for days at time?
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Since having frozen shoulder, I have also suffered with neck pain and neck stiffness. It's not the same dreadful, unbearable pain that you get in your shoulders and arm, just a dull, persistent ache. Does anyone else have this? I have been told that I have a slight amount of arthritis in my neck, but that this is 'normal' for someone of my age (53). I never had this pain before I had frozen shoulder - there is probably a connection but I'm not sure if it's the frozen shoulder causing the neck pain or if the neck problem may be the cause of my frozen shoulder!
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I have been off work since last September. when one morning I woke up and thought I was going to be paralysed as I was I the most severe pain in my neck, but actually couldn't move. I was given diazepam to relax the muscle spasms. Already on tramadol but also given cocodamol. Saw chiropractor for 6 weeks. Wasn't happy there though. Slowly regained more movement in my neck but the pain was getting worse and my shoulder and arm in excruciating pain. Can't lift arm up or behind my back. Putting certain items of clothing on causes sudden pain that makes me want to scream out and maybe faint sometimes. I hope I don't offend but going to the toilet is a feat. I feel like a fraud to others as you can't see this and it is the most painful thing ever. I have had 5 children and this is worse. I've seen a spine Physio today and being referred for MRI. She seems to think I have now developed frozen shoulder on top of neck problem too. I'm exhausted from it all. Bit nervous. I feel a fraction of the person I was 7 months ago. Thank you for listening to me wittering on about myself.
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Any one else experiencing the same? & any answer of what it could be?
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I have had shaky hands for years and has recently got worse. I woke up with pain in my shoulder which spread to my elbow, wrist and hand. I went to the gp and was given a splint, pain killers and referred to a hand specialist for nerve conduction studies for carpal tunnel. I was also told to go for a massage as the muscles on the right side of my back and shoulder were solid. However, when I went for a massage it only made things worse- I went into a healing crisis (apparently this is a real thing!) and was in agony. I saw an orthopaedic physio privately who thought i may have nerve damage in my thoracic spine, but when I went back to the GP I was told to continue with carpal tunnel diagnosis. The nerve conduction studies came back negative and now I'm being sent for an MRI and referred to neurology. 6 months later I am no closer to knowing what is wrong or how to tackle the impact it is having on my life.
I am an occupational therapy student too and using dragon software to write my assignments as it is difficult for me to handwrite or type. I am also a painter and crafter and have not been able to do any of the things I enjoy. I am currently on a health and design placement and am looking at spinal injuries and neurological conditions. I thought it would be a great opportunity to look into ways I can help myself as well as other people- Is any one else having issues using their hands? Is anyone using adaptive equipment- its not attractive stuff! ? Maybe there is an element of a task that other people would like a product to help with?
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how do you cope? One year ago I fell downstairs (vertigo) fractured my neck and had severe pain in upper left arm, felt like a very bad bruise and a swollen but not broken wrist. Neck healed, pain in my upper arm remained and could move it but not do up bra etc without severe pain. Had an injection in my shoulder - made it worse. 11 months on I fell down a shorter flight of stairs (return of vertigo!) on to same bad shoulder/arm. Now frozen and pain from neck to finger tips all the time and even worse at night. Can't take oral pain relief tablets has anyone tried pain relief patches? The pain is so bad I can't do anything and I am getting seriously depressed and being driven to despair, its like being in constant childbirth labour! constantly having to massage my arm including from elbow to wrist and palm of hand into fingers. Given conflicting advice by every medical person seen so far. Seems it is likely multiple problems but still no MRI, xray shows no broken bones in shoulder. Read most of the discussions, not many triggered by injury unless I have missed those. Any support groups locally in Cornwall where we could at least cry openly!
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Have been on bendroflumethiazide for about a year now and the Doctor has taken me off them 3 weeks ago. Have numb and tingling thighs which mean I have trouble walking. I am stumbling along like I am 90+ yrs old. My neck and shoulders are stiff and I have shooting pains in my right eye. Is it correct that you shouldn't take these tablets if you have a stone in your bile duct and also a pending gall bladder removal. Also I have just read that you shouldn't also take them if you have an allergy to sulfa based medication. Is this also correct?
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I've been unwell for on and off now for almost a year. I remember phoning off sick a couple of times before feeling tired and 'achy'. I thought I was just being lazy and this was psychosomatic. Then I started getting really ill when I developed a sudden onset of neck/shoulder pain which is still an ongoing problem now although the pain has turned into discomfort/ache which I have learned to manage doing exercise and stretches. I also feel sensitivity on other parts of my body (like invisible bruises.For 6 months I was coping with my neck/shoulder problem (symptoms are crawling/tingling sensation in the arm, sensitivity to touch like its bruised and cold feeling and dull ache on my shoulder blade).
Then gradually I started developing 'flu like symptoms' without cough or cold but with tiredness/fatigue and dizzy headache which are intermittent throughout the day, until 2 weeks later I started getting throbbing ache in my legs and eventually I couldn't sit all day without getting restless legs and crawling/tingling sensation in my legs which caused weakness in my legs and worse when I'm going upstairs - and my knees keeps clicking. I went to my doctors who prescribed me with naproxen. And told me that I had something called Reactive Arthritis, which i thought was a misdiagnosis. Overall I thought that it could be viral related
This time I've been off work for a week when I started to feel better after a week on naproxen. I came back to work for a week feeling like i thought I recovered. Then boom 2 weeks later gradually the flu like symptom came back with extreme tiredness / fatigue and I've been in bed since. I'm still achy all the time regardless. I have no energy to do anything, even showering is a struggle. I've been in bed most of the time, sometimes I try to go out with my husband for a few hours but I come back home absolutely exhausted and the soreness/headache i get is a different level. Most of the time I feel like my body is inflamed.
So i decided to get a second opinion and i went to see another GP who referred me for a blood test. A few days later, my results came through and I have Vitamin D deficiency. Everything else they tested seem fine. I have a better outlook now though after the diagnosis, apparently it will take months for the treatment to take effect. I guess now they found something they will stop investigating further (which worries me a little bit) but i guess its process of elimination so treat one thing at a time. Would be great to hear from others who also has this deficiency and whether the treatment was effective?
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Started over a year ago with head pressure in back of head and upper neck causing nausea and dizziness. The symptoms also come with neck soreness and stiffness. Sometime it's a burning pain up the neck to where it connects to brain and radiates to forehead. It's so miserable. I have had sinus ct scans, Mri, mra, and tons of blood work and can't find nothing. The weirdest symptom I get and want to find someone with insight on is that during this my top of head and neck get ice cold to touch.
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Suffered bad tension headache and neck ache for almost 3 months months does anyone else feel pain can resonate from the neck up the side of the head and onto the top of the forehead? It feels like a tight band around the top of my head?
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Just recently been diagnosed with a 4cm sliding hiatus hernia after suffering for 2 years with horrendous chest, neck, shoulder and back pain! been to A&E a least 5 times this year thinking I was having heart problems! had an endoscopy 4 weeks ago and was diagnosed! so now what? I was sent home with no advice whatsoever. been on all the PPI's for the last 15 years as I suffer with GERD and IBS! I feel bloated all the time, I burp, fart, feel sick and light headed and now I get a pulsating throb from my tummy through my chest into my throat If I eat the wrong thing it feels like I got a tennis ball stuck behind my sternum, really fed up with this now. I won't go the operation route, it's not got a good success rate! so it's maintenance, put the head of my bed on two blocks 8 inches high, given up gluten and dairy and all spicy foods eat 3 hours before I got to bed and have a swig of gaviscon as a nightcap! I take a multivitamin and magnesium supplements. the next step is stop smoking and drinking red wine what else can I do? the omeprazole makes me feel crap, so I've gone back to ranitidine.
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Does anyone have urinary frequency and/or urgency since taking pred? Like getting up every 2 hours during the night, and other times. Also swelling of the ankles & feet? Also stressful discomfort over the upper back and shoulders? Myi ankles have become quite edematous, I avoid all added salt.
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I have a 'Frozen Shoulder'.
This was caused by an inoperative Humerus shoulder fracture because the orthopedic surgeon found an infection in my bone during surgery. ( I fell back on 10/6/14) Doctors were baffled how I ended up with an infection since I had no cuts and was in perfect health before I fell.
Surgeon put a drain in and closed me up. I was in a sling for 2 1/2 months and on IV antibiotics for over a month.
Dec 14 I started Physical Therapy, 3xs a week. Along with exercises at home. I have little ROM. Very stiff. Extreme tightness.
I have constant pain from the back of my shoulder to my elbow, bicep. muscles. The little knots are quite painful. I push, squeeze to ease the pain. Massaging the shoulder / arm eases it just for a bit.
Due to the infection that was found in my bone during surgery, three ortho surgeons said they will not operate on my shoulder.
Intensive therapy is all they said I need.
Ortho surgeon will not prescribe pain medication.
My primary care physician prescribed 10mg oxycodone which I cut in half. I only take a full pill when I have physical therapy. Scared what will happen when I run out of pills. Doubt my Dr will refill the prescription. (sad face)
I have tried Aleve, Excedrin, Advil, which doesn't help the pain. I even mixed them with benadryl to sleep. But that didn't help either.
Do to Medicare amount allotted for physical therapy, I can only go a certain amount of times. Which now, I only have a few more visits to go.
Been going to PT for about 3 months and haven't seen any improvement. This is really horrible!
PT said he will teach me what I can do at home and that I could pay $30 a visit if I wanted to.
But personally, I feel it would be wasting my money since I would be paying him just to rub my arm for 10 minutes since I do the same exercises at home. I bought a door pulley and therabands.
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So i have been posting in an anxiety forum for a while, because initially my doctor diagnosed me with Generalized anxiety disorder over a fear of a brain tumor because of the following symptoms;
-constant headache/pressure that started about 3 months ago
-noticed that my pupils at times are uneven (my right one at times is about a Millimeter or more dilated than the left) this is usually most noticeable in the morning, but can catch at certain points in the day
These symptoms sent me to an urgent care first, who ordered a CT scan. The next day i had a panic attack and was so sure i had a brain tumor. I rushed to the ER where they gave me the CT scan w/o contrast, came out normal. I then met up with my GP, who after looking through the ER report, diagnosed me with GAD. The timeline makes since because in the last 7 months i have had a massive promotion at work, had my first daughter and have an increasingly stressful relationship with my wife. I also had an optometrist look in my eyes, he noticed the uneven pupils but reported that they respond normally to light, and that the discs in my eye do not show pressure and my optic nerves look good.
So i am trying to overcome my obsession with thinking having a BT. I have a neurologist appointment in 2 months, and hopefully then i can get some peace of mind. but until then i am trying to find other possible explanations for my symptoms.
Since the initial onset of this condition, i have been put on several medications to control the anxiety and help with focus;
zoloft 100mg
Klonopin 1.5 mgs a day
Trazodone 50 mg for insomnia
adderall xr 20 mg for ADHD
along with the medication, i have seen an increase in side effects/symptoms, at this point its hard to tell which is which because of all the meds;
-Headache seems to focus behind/above my left eye
-Tingling in right hand, sometimes pinky ring finger only, other times top of right hand, though this has subsided in the past few weeks
-shooting pain in left temple
-seeing stars at random intervals, usually white, but occasionally purple in my field of vision
-feel off balance/dizzy
Now i know that's a long backstory, but i feel it necessary to explain the whole situation. Now i know i have TMJ, my jaw clicks constantly, and loudly when i fully open my Jaw. I also experience lockJaw 3 or 4 times a year, usually due to stress. My jaw also gets sore sometimes when chewing. So although i have not been officially diagnosed by a doctor, it is safe to say since my mom and 2 of my siblings have been diagnosed, i have it too. Now my question is, could TMJ coupled with stress cause most or all of the problems i have listed? primarily a constant headache? If anybody has experience anything like this or has any advice for me, i would greatly appreciate any comment you can give.
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I'm a 21 year old male, I'm of a average weight and I've not been diagnosed of any conditions other than my heart working a little harder than normal in the lower left quadrant (birth defect) I don't smoke or drink either.
Around 3-4 days ago, I noticed that my ear and the right side of my head felt a little different to normal, numb I would have said.
Wen waking up in the morning, I began to notice a sort of ear wax like substance on my pillow, although it seemed to be more of a brighter yellow colour and had a more cheesy type smell to it, not a huge scent, but certainly different to normal (gross I know)
The same day, I started to get quite a bad head, however only on the right side of my head originations from the top of my head and to the right where my temple is.
The pain was on and off and seemed to ease off when I took sinus relief tablets.
Since then, I've started to feel a little dizzy and generally under the weather, my face is warm to touch and my cheeks are red.
Since today, I've also started to feel a little sick aswell and I noticed this morning when I woke up that I had a sort of swelling on the back of my neck to the right hand side just under my hair line, it's around an inch in diameter and doesn't protrude the skin but it can be felt if I were to run my fingers over the area, it is a little tender to touch and has no discolouration on the skin or any visible marks.
It's not solid to touch as such, more like something you'd feel after you'd banged it on something and it had swollen with fluid.
What I would like to know is, does any of this sound familiar to my of you?
I would like to add, that previous to this, I had an eye infection which I needed to take antibiotics for which hasn't quite cleared up yet but is more or less gone now, I also tried to clear out my right ear with something, so is it possible that I could have an ear infection that's spread and gotten worse?
Or could this be something more sinister?
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I feel mostly well but lately my only annoyance has been shoulder neck and back of head ache. This is mainly located at the right side of my body but occasionally spreads to the other side. It's more of a constant dull ache which is relieved temporarily by icing it. Does anyone else get this? Sometimes I feel like the pain is also in my left ear. saw my gp a week or so ago and he didn't seem concerned. I just wondered If anyone else experiences this. Yesterday I felt like it hurt to swallow in my throat but only at the side where im getting the rest of the head pain.
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Had stroke 13 years ago. Have suffered anxiety ever since. Mainly dizziness. Recently came off citalopram after 8 years, started on sertraline. Never felt worse in my life......including severe diarrhea. Dr now stopped sertraline and put me on propranolol one week ago. Still feel awful and dizziness possibly worse. Will anything ever work?
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