He guys.. it's been a while. Sorry, but I had to check out of here, for it was making me heavily depressed to even discuss or write about this disease of mine at the 1 yr mark. . Lots of panic attacks, lots of xanax, lots of doctors and 14 Tia's despite taking 3 types of bloodthinners, turning life into a horror show. . Still don't want to discuss that part very much.
It's been 2 years exact now, since my diagnoses, and I have stopped the steroid tapering this week. ESR and CRP are normal. That much is good.
But, over the last year I gathered a few more immune diseases, which is not good. It is still very much unclear what's going on, despite doctors running tests all over.
My LDL shoots up to 200 every time I stop the statins. This, despite having changed my diet, excluding everything that is know to raise cholesterol, veggie, sugarless, with all the nuts, berries etc that one should eat, plus the omega, B12 and calcium supplements.
I went from 76KG to 60KG, and i've shrunk from 174.5 to 174.2cm
Now I have stopped the steroids, maybe LDL will stay down, but I doubt it.
After GCA, That's immune disease n2: hyperlipidemia.
X-rays show the crumbling of my hip bones. 2 yrs ago I was still jogging. Not anymore. Where in the beginning of this year, walking properly was merely an issue for a few days after sitting wrong for an hour, these hip issues have now been a daily thing for 3-4 months Now. at almost 52, I walk like a worn down 75yr old with Arthritis.
It's basically always painful, but less on Paracetamol+Celebrex, 3x per day.
That's disease n3 . ortho-arthritis.
Depending on which of the dozen of doctors I should believe, I have early onset cataract -for which nobody will treat me for now-,, or I have brain damage because of the TIA's, and/or I have dry-eye syndrome, for which there is no medicine, on top of the fact I don't have any of the many symptoms, except blurry vision.
What I have is blurry vision, light sensitivity and permanent LSD-vision, and focusing on anything or more than a second is difficult .
Which of these age- or immune related diseases this is exactly, is yet unknown, but it could be nr.4
Nr 5 is a tough one, and I guess that's why I am back. Pain all over.
I mentioned before, my hips are paining because they're crumbling, Clearly worse on the right side.
But, some 4 months ago, an otherwise rare stiffness in my fingers became a daily painful thing.
Muscles above the knees, high lower arms and high upper arms feel as if I just ran a marathon, rested an hour , and then tried to run yet another mile.
The pain all seems to come from muscles, though, except my hip..if I had to draw a verdict.
No new neck or back issues, other than the partially herniated disk-issues I've had for 35 years, and I can tell which is which.
But, the lower back sometimes screams out in stiffness and pain, but it's not daily, and not caused by anything I know of. It's new.
Despite all the reading I did, I can't figure out what this is RA, PMR, or something else? MS, maybe? The doctors don't know, but that's not news here.
Maybe you guys can help me figure out these symptoms? That would be great.
Have you not considered the muscle pain could be PMR back? They are the places my PMR affected most originally except for a stiffness in shoulders that stopped me sleeping with my arms above my head - but they weren't painful as such, just wouldn't go into a position above shoulder height comfortably.
I can truly understand checking out of the “ sick room” for a while because it was making your depression feel worse. It is very difficult to get a firm diagnosis when you have so many symptoms and of course mental health issues can magnify everything and make the outlook seem bleak. To me, all of your symptoms are familiar , with PMR, Steroid side effects and Osteoarthritis. Possibly side effects from Statin and painkillers too.
I find that preservative free dry eye drops do help me, but I can’t wear eye makeup anymore or have chemicals or scent on my skin. It is frustrating to have to wait until cataracts reach a certain stage before you can have the operation too. Are you not on steroids at all now, or have you just stopped tapering? It seems to be the only drug doctors come up with when symptoms are this confused. Have you seen a Neurologist in all your exploring?
I was surprised to read that there are complex cases where no cause is found a all. I was reading an interesting case study about a fit healthy man, whose health collapsed overnight, it eventually turned out that he had Sarcoidosis, but he was told that an explanation may never be found. He could barely walk. It does seem to boil down to inflammation, which also plays a part in depression. He was given Prednisalone which helped somewhat but basically he had to wait it out, gradually increasing his activities as he felt able. You are right in saying that this all boils down to autoimmune diseases. In many instances, the medical profession appear to be playing catch up.
This probably doesn’t really help. However, I think many of us go round in circles with a range of symptoms that seem to get more complex as time goes on and get a bit lost. I was buoyant when I got the PMR diagnosis because I had begun to feel like a hypochondriac, which I found horrible.
Have the tested you for Fibromyalgia , a common syndrome to add in with Chronic illness sufferers that affect more than one part of the body ?
Fibro diagnosis is based on Pain affecting five out of thirteen recognised pain pressure points for more than a month up to three times a year. Your pattern sounds very similar to Fibro . Fibro isn't an either / or Syndrome you can have it alone or you can have Fibro or it progresses and have RA / OA / PMR or GCA. In fact , most Chronic Health issues can eventually cause Fibro to arise as the body becomes more hypersensitive to Nerve Pain and the Environment. It also affects the Head , Nerves and Digestion and Sight . It is often misdiagnosed or misinterpreted , as simple Migraines and Back Pain . The severest forms can feel like MS , Stroke or Parkinson's , as Parkinsonism ( tremors / symptoms like Parkinson's).
Have you recently ( in the last 6 months - a year ) tested your ANA , ANCA and PANCA , Sjorgrens and Rheumatoid bloods ?
As you may have a multi system chronic condition like Lupus , Lymes , Epstein Barr , MS, Parkinson's, or a Connective Tissue Disorders like MCTD , Ehlers Danlos etc.
These conditions can all cause wide spread arthralgia and muscle pain , and affect the eyes , skin , nerves and digestive system as well .
It is worth making the decision to push for testing of all the bigger multi system illnesses now , including Sjorgrens , Raynaud's and Thyroid tests when you begin to gain a collection of various Syndromes or health Conditions like the ones you have.
Even Back and Neck Pain that causes severe Ocular Migraines can cause stroke and MS like symptoms.
So , a CT or MRI may be useful in diagnostic tests for you too.
Yes , you may come out after many months with a big number of linking health issues listed but oddly that's not a bad thing because if you know what you are working with it makes it a lot easier to find ways to reduce its effect on your Mental and Physical Health.
I have a collection from A to Z except for Q now ( unless you include Queasy !) but it was worth going through that period of frustrations and low level anxiety as now my picture is nearly full and all my Consultants can work together to create a Drug combo that will work effectively to give me more quality of life ( after a little more trial and error).
It also makes it easier for me to politely push with my Doctor's for things I have researched that fit my Disease pattern so I can get improved assistance not just Medicinally , but with add on therapies like the "appropriate" physio and Self Care options.
Have you been to the Opthamologist and had a full set of eye and retina scans / photos and eye function tests and a Schirmer Test to give a definitive diagnosis of Dry Eye Syndrome?
It's the best thing you can do to get things with eye symptoms under control( along with possibly getting an EEG ) .
If you have Dry Eye Syndrome , like myself , the best treatment is Celluvist single capsule eye drops whenever needed in the day ( they hate prescribing these as they are very expensive but that is because they are as close biologically as possible to real tears and so highly effective) Often part of Dry Eye is the loss of essential oils on the eyelids as well and this is helped by Vitapos A ( on prescription or OTT ) it is a gel for night that adds nutrients and oils to the eyes reducing Dry lid and scratching.
Medicinally , you friend is good nutrition containing Retinol Vit A and Collagen , from eggs and meats and fish and Dairy . A multivitamin with Vit E, C, A, D , zinc , selenium , copper and magnesium and potassium . At least 2 litres of fluids a day all help Dry Eye .
Warm compresses over the eyes bring relief from the bruise like pain. Wearing sunglasses even in bright indoor places or outside in Winter reduce the environmental impact on your vision like cold , dry air , wind and artificial or bright light.
Reduce screen time of any sort including phones if symptoms are bad as watching a screen reduces how much you naturally blink . Only using a device for an hour at a time is also important.
If you still struggle and have Dry Eye Syndrome they may offer you Eye Sacs ( Don't work !) or Punctual Plugs to block tear ducts and reduce tears leaving your eye area.
If you look up Herons Profile , you can get to read lots of posts on her way of tackling OA and her really mentally positive and natural , gentle way of improving Bone Health . It will at least help stop further deterioration in its tracks .
You do begin to feel so Mentally Fatigued with it all , and often feel like giving up , I've been there , but I also know from my experience if you ask for as much support and help as you can get from those around you , and are honest to others about what is going on and how it makes you feel it makes you feel more relief and it's easier to bear getting to those diagnosis. The Physical becomes easier as well , even though it isn't a quick fix , as you can begin to build a " New Normal " to create an easier Life with Greater Quality in it. I'm 48 , and have had growing Chronic issues since 29 , so I can empathize with the feeling you are having about feeling old before your time , but can also be you proof that things slowly get better.
If you ever want to PM me I will be more than happy to hear from you , for a question , rant or even just a chat to cheer up. Take care xx
Sorry for the long answer but I hope it might help you on your way again.
13 trigger points in total , but you only have to experience the Chronic Pain in 5 of those 13 points for more than a week and upto a month on three separate occasions in a year to be classified as a sufferer of Fibromyalgia.
The are a multitude of other associated symptoms in the Syndrome including skin rashes, Fatigue , Brain Fog , loss of coordination, vision disturbance , emotional disturbance , Peripheral Neuropathy and Digestive and Breathing issues but although these are noted , just like with Conditions like EDS , MS , and Behcets , in Fibro it is the Pain Point test without other underlying causes like RA or Lupus that create the Positive Diagnosis.
You are often also diagnosed with Chronic Fatigue Syndrome at the same time as Fibro as these two Syndromes commonly go hand in hand .
BTW... My old thread is "GCA at age 50" It's the first year with GCA, containing all the recent medical history and even more drama..
""Have the tested you for Fibromyalgia , a common syndrome to add in with Chronic illness sufferers that affect more than one part of the body ?
""
Yes, it's in my doctor's file. However, because of the missing symptoms and extra symptoms, he doesn't seem too sure .
""It also affects the Head , Nerves and Digestion and Sight .""
No such issues, except for my sight, and that one has 3 diagnoses already., haha! Let's add a 4th one!
""Have you recently ( in the last 6 months - a year ) tested your ANA , ANCA and PANCA , Sjorgrens and Rheumatoid bloods ?
""
Only for Rheumatism. Negative. Will ask about the others you mentioned.
""As you may have a multi system chronic condition like Lupus , Lymes , Epstein Barr , MS, Parkinson's, or a Connective Tissue Disorders like MCTD , Ehlers Danlos etc.
""
Will write these down and check.
""These conditions can all cause wide spread arthralgia and muscle pain , and affect the eyes , skin , nerves and digestive system as well .
""
Skin and digestive systems are fine. Not sure about the nerves. That's where all the pain comes from, I think.
""testing of all the bigger multi system illnesses now , including Sjorgrens , Raynaud's and Thyroid tests""
Had the thyroid test. negative
""Even Back and Neck Pain that causes severe Ocular Migraines can cause stroke and MS like symptoms.
""
Not really applicable neither, luckily.
""So , a CT or MRI may be useful in diagnostic tests for you too.
""
Had those. Broken vessel in brain the area behind the right eye, controlling sight from both eyes and swallow functions.
low level anxiety ... ..knowing..makes it easier for me ""
Indeed, knowing what's going on is very important, no matter what.
""Have you been to the Opthamologist and had a full set of eye and retina scans / photos and eye function tests and a Schirmer Test to give a definitive diagnosis of Dry Eye Syndrome?
""
Yes, the works..all of it, many times, different hospitals and clinics. Like I said.. 3 different diagnoses, and dry-eye is really a far stretch, since I lack all specific symptoms, except blurry vision. Cataract and brain lesions come first.
""It's the best thing you can do to get things with eye symptoms under control( along with possibly getting an EEG ) .
""
Had them, and X-rays, all all other machines available, with contrast liquid in 4 colors.
No change in the lesion over 1.5 yrs
""If you look up Herons Profile , ""
I will surely check that.
""You do begin to feel so Mentally Fatigued with it all , ...
Thanks so much for your nice words and suggestions ! Indeed, that's the killer feeling. Old before your time, nearly overnight, 20 years older.
Yes , well mine is GCA diagnosed at 47 , so when on the kids table .
Early onset probably caused by the EDS and Fibromyalgia diagnosed as they checked me for Behcets . If he isn't sure about Fibro you could do with being checked by a Rheumy with Fibro Specialist knowledge because it is highly likely that you have this as well as your other conditions and getting on the right Drug Combo including Neuro medications like Pregbalin could make a big difference .
Uncontrolled Fibro or Nerve pain conditions work in a vicious circle with the GCA or OA pain , each poking the other awake , steroids alone may not be enough for your relief , it isn't for me as the Pain comes from various origins.
Protocols of reducing triggers causing blurred vision are much the same with Eye conditions as in resting , less screen time , eye protection from light and environmental triggers and lubrication . These may still help reduce the vision issues.
Do you ever get tremors , palpitations , or anxiety like feelings without an emotional trigger , or dizziness or lightheadedness when moving quickly after being in one position for a while?
I recently got diagnosed with Cardiac issues too , that and the GCA has been the straw that broke the camels back for me , as you say it felt like my physical abilities just left me over night , I have extreme exercise intolerance and activity headaches , so I do feel 20 years older overnight too.
We'll get through it though , if we are still searching for answers it shows the fight hasn't left us and we are stronger than we think we are . Take care xx
Hi Stan I can’t comment on most of your ailments but I do find Optrex intensive eye drops really help with dry eyes 3 or 4 times a day and sometimes use them in the night too
Thanks, but my blurry vision is my only dry-eye-diagnoses-related symptom, and all other 8 symptoms are absent.
Except for early onset cataract and some nearsightedness, there is nothing wrong with my actual eyes. I think it's a desperate diagnoses of an overly eager doctor, frustrated about not being able to diagnose me. It's the brain lesion or the cataract causing LSD vision, and maybe even both. That's what 3 other doctors are thinking of.
Hi floyd111, so sorry you're suffering. Have you had your Calcium and PTH levels checked? I also have hyperparathyroidism, which has a whole range of weird symptoms, and is difficult to get diagnosis for, as many GPS and even endocrinologists are not familiar with it. An American specialist thinks a quarter of all fibromyalgia patients could actually have this condition instead. The website is hyperparathyroiduk.com Hope you feel better soon.
Well noted with thanks. Will investigate. Had my thyroid checked, but I'll double check. actually, in the light of all these new angles, I need to make a proper list and have a proper sitdown with the one rheumy I've been treated by in the past, who seemed to actually care AND comprehend.
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