Has anyone else who is recently diagnosed pored over memories of when it all started? I find myself day dreaming about every illness, achy joint or itch since childhood!
I have Raynauds which has been ignored until I showed the Rheumatologist pictures at my appointment on Tuesday. I have a prescription for something I can't remember. I also have a prescription for chlorohydroxyquine which I don't want to take, mainly because I can't risk taking anything that could make my migraine situation any worse. In the last 2 or 3 years they have turned into cluster headaches and after suffering for nearly 20 years I am only just referred to a migraine clinic which not a single GP at my surgery knew about.
I first saw the rheumatologist about 2 years ago and then again about 6 months ago. Bloods were negative although a 'marker' ( I think) for antiphospholipid syndrome but not enough for a diagnosis and I don't have any symptoms of that. She ordered MRI of neck which showed thickening of tendons and hand and wrist ultrasound. I was very surprised when I got to the appointment as I had never had any real pain in my hands, just twinges and developing thick knuckles and some hard lumps. I forgot about it, demanded physiotherapy and told myself I would not make any more appointments, just carry on with my running, walking etc.
Then a couple weeks ago I got a letter from her saying that the scan showed I had mild inflammation in the wrists and an urgent appointment had been made which is when she made the diagnosis and 'offered' me the hydroxychloroquine. I was surprised and so was the GP, that she hadn't done any more blood tests at this appointment. As another poster here has said, I wonder how wise it is to take this possibly disabling drug in the absence of positive blood tests too, however I am aware that ultrasound is a major part of the diagnosis. I'd love to hear from anyone who has been taking hydroxyxhlorquine.
I also wanted to share some of my symptoms which are often met with indifference by rheumatologist and gp:
The pain is also in my ribs, under my bust and sometimes to the back.
Unexplained spontaneous sudden bruising on my leg and sometimes my elbows. I have also had small oxblood coloured bruises that look quite red, about the size of a 5p.
The cold!!! I hate the cold. Apart from setting off the Raynauds in my fingers it also attacks my feet and the tip of my nose which seems to be constantly dripping. Vaseline helps. All it takes is for me to touch the cold steering wheel and my whole body feels chilled. Getting out of the warm car and into slightly cooler house sets off too. Bedroom to bathroom...hands in water...getting out of the shower...
Tender eyeballs, or lids, difficult to feel where it is coming from. It isn't really painful, just weird. I also have dry eye which doesn't really bother me and I wouldn't have known had the optician not told me a few years ago.
My worst pain is between shoulder blades and up my neck. When this kicks in, I feel fluey and really achy.
I also get an arresting pain in my coccyx and sacroiliac joint. It comes and goes but when it comes it makes me wince with every step.
I have noticed that there is no rhyme or reason to when the pain comes and it's everywhere: fingers, backs of hands, feet, toes, heel, elbows (particularly bad at the moment) collar bones (also makes me feel fluey) knees and I often wake up with heat in some joints and quite severe pain especially in the knees. HOWEVER one thing which is consistent in causing me weeks of pain is inactivity. I recently had to leave a job which I had started 9 months before, because of migraines, and it was the first desk job I had had for literally 20 years. I am very active, walking and running for at least 4 miles every day and within about a week of sitting on my backside my coccyx felt like it was on fire and it hasn't really died down.
I have another job, only 2 hours a day, updating social media, and even after that I hobble back to the car to drive home! Don't get me wrong, when I'm running and walking I often have pain in my feet and knees but I work through it and always feel a bit better after, but inactivity is a real killer for me.
That's quite a long list! Sorry to go on. I would be really interested to hear if anyone else has these odd symptoms.
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Brychni
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Well I can suggest that you try biofeedback right away for your migraines. It really works. I haven't had a headache at all since I learned this technique 10 years ago. I was suffering from daily migraines before.
What a list of debilitating ailments you are experiencing , all quite horrible, but I think you will find people on the forum will identify with many of them and your experience not miles away from some personal accounts of RD. You are not alone, one of the big comforts of this forum ! You will also find many of us here have been very active outdoorsy people, myself included.
My RD seemed to start after a bad fall and broken teeth, maybe just coincidence, who knows ? But, on reflection I was struggling for a long while with random joint/aches pains/neck issues, had surgery on my spine, have Raynauds and generally not feeling so well for a long time. When I am very unwell 'brain fog', headaches and cognitive issues are a big, big problem for me. I recently found out I was first tested for rheumatoid in 1989 and twice since then, all unbeknown to me and all negative, so I suspect something has been amiss for a very long time.
Noone wants to take medication that is not necessary, and your rheumatologist would not prescribe hydroxychloroquine if not justified. The longer you remain unmedicated the more opportunity for permanent joint (and systemic) disease and difficulty with future treatment as RD tends to respond better with early intervention.
So, the best advice is follow your rheumatologist advice and start your medication. It may take around 12 weeks to work effectively, and you may not experience side effects, not everyone does. If HDQ works for you many, if not all of your symptoms may go and you can get back your life again. Remaining unmedicated may just be storing up more health issues for the future.
You are already getting some good replies but I just wondered if your Rheumatologist has looked at Sjogren’s ( dry eye made me wonder). Also, could your pain near ribs be Costocondritis (?). I have RA and put on Hydroxychloroquine immediately. This is also used for Sjögren’s. No side effects, regular eye tests required. I takes some months to take effect and has very slow half-life so I wouldn’t delay too long as this is very much a first line starting medication. If they suggest you start it maybe you need to speak to them about your hesitation. Perhaps ask if you are not medicated what could you expect in the future with progression of symptoms? Could back issue actually be emanating from your hips (? Just a thought). Best of luck.
Hi NorfolkBluebell.... if you don’t mind me asking.... do you have direct experience with Sjögren’s? Daughter is awaiting the blood screen for inflammation markers but they discovered dry eye at first Rheumatologist appointment. She has been troubled with headaches/ migraine for years.... plus lots of other odd / random issues that we never tied together before as came and went but her fatigue is pretty much constant.
Not myself, but two close friends. One has had it for many years and struggled for a long while to get diagnosed. She had Chronic fatigue syndrome and for a long time they misdiagnosed the Sjogrens as part of that. She has tried all sorts of supplements and diets over the years without a lot of definite results. In the past 18 months she has been on a strict exclusion diet and is now adding things back in. So far dairy free has made no difference, but she thinks gluten free may have had an effect. She doesn’t have ra but was diagnosed with autoimmune thyroid disease last year. My other friend has had fibromyalgia for a lot of years, but doesn’t have any other conditions. She’s currently being checked out for Sjogrens as she’s had a change of symptoms that her consultant says could be a new faze of the fibro, or could be Sjogrens. I think many of these conditions have such similar symptoms it’s sometimes difficult for the medical profession to pin down what you have, and sometimes you have multiple conditions. If you’ve got one autoimmune disease you’re statistically more likely to get another. Good luck!
I picked the tablet up just now. Hips I don't seem to have a problem with. The pain in my ribs does indeed feel like it could be costo...whatever!! I have no problems with my breath or breathing but sometimes my whole ribcage feels 'tight' and that makes it difficult to breath.
I’m s- negative and a lot on your list I’ve have had .
Thickening knuckles, bruising, achy flu,pain in ribs and back( costiconditis), stiffness lack of mobility burning joints.the coccyx pain I had for months and boy does that hurt no comfort especially when resting getting in and out of a chair excruciating. I had physio for this( these exercise are so simple and work . You can google them). My bloods don’t show inflammation or just slightly raised when things are at the worst. My hands were scanned on diagnosis screen was just a mass of red . All my joints are effected some all together other times just a specific are. Contrary bugger is RD
Hi J1707, yes I find all my physio helpful and I have a Pilates book - most of the exercises I've been taught at physio seem to be based on Pilates. I've decided to join a class though, as I doing it from a book is difficult. I too get the unpredictable presentation. YES! Burning, that is how the paiin in my upper back feels. Sometimes it radiates to the front and makes me feel really sick. Soemtimes I get GERD reflux burning at the front which radiates into my back! What fun.
Hi Brychni. I had similiar symptoms and the usual treatment, including biologics and methotrexate together. Eventually I sought different treatment which included a regime of antibiotics. Exercise is really important. I swim and go to the gym. After 8 years i feel as if i am now back in control of my life. I do wish you well in your journey.
Hi. It's really tough when you're first diagnosed. Looking back I've pieced together symptoms I didn't realise were RA but with hindsight all the weird things my body was doing now make sense! One of the things people say when I first tell them is, "but you're so healthy and active!" and if you have been a very active person it is challenging to accept that your body can't do everything it used to, but there's ways to adapt and cope. I'm a yoga teacher, I walk, cycle, spin and play badminton. I can't do everything I used to do in the same way, but I'm learning to adapt. My consultant says I've probably had it a lot longer than I realised but because I'm really healthy and active it's helped keep some of the symptoms at bay. I'd urge you to ask to see an occupational therapist. I thought it would be a waste of time, but she really has been remarkable and made helpful and useful suggestions, and most importantly made me feel that I'm in control again and not the ra!
I've found I know when I'm getting a flare as my IBS plays up, then I often get a bad headache that can last two or three days, then the flu like symptoms, the swelling and pain kick in.
Keep using this forum, I've found it really helpful in the past few weeks since I've been diagnosed.
All of the above but wonder why you assume hydroxychloroquine cause migraines/headaches?
I'm on and off hydrox and makes no difference - I have suicidal headaches which incluse visits to a&e.
Touch wood those suicidal ones (and I mean really suicidal) and bog standard migraines have decreased while getting older but replaced with blind spells/episodes of blurred/diminished vision, so could argur that hydrox has improved them
Incidently it appears hydroxychloroquine is being tested in at least 10 active trials against the Coronavirus
I have suicide headaches too , 3 times to A&E. Oxygen and something in a drip. Did absolutely nothing. I get migraines too. Just about to double check that I can still take my sumatriptan injections with hydroxyxhloroquine. the leaflet the consultant gave me states quite clearly that it can cause headaches. What do you take for your headaches?
My headaches have 'mutated' and are getting worse. Used to be migraines, horrible but predictable. For about 2/3 years now they have become what I now know are cluster (suicide) headaches. Vile. Just vile. I honestly wanted to bang my head off the sink with the last one. Couldn't keep still, pacing around the top floor, bent double. Absolutely horrendous. I have finally, after nearly 20 years of suffering, been referred to a proper headache clinic (neurologists are a waste of time).
oh you don't know how 'good' it is to hear someone doing the same ... I used to get told to go lie down in a dimmed room and I want to SCREAM back at them - despite the agonising pain! I really do believe it was worse than childbirth. Pacing and rocking, going from room to room. Hopefully yours will diminish like mine have done....
am sure it eroded some of my memory cells every time I had one
If you can, let me know how you get on at the clinic...
It's interesting you say that because after every one I feel permanently damaged. you know there is a school of thought that it is an autoimmune condition. Wouldn't surprise me.
ahh at last someone who understands! Really annoys me when folk 'complain' of a migraine but carry on about their daily business.
It really is crippling, cannot move, just fall to my knees and rock and moan for up to three days! sumatriptan did nothing sometimes for the less painful episodes but I used (and still do) Maxalt melts (refuse the generic ones as do not dissolve on tongue) they are 10mg rizatriptan wafers.
Don't always work, just sort of numbs it sometimes. Painkillers didn't work nor did anything at the hospital.
And when sick used to use motilium suppositories (anti semetics on the tongue made sickness worse) They were great, but they have stopped prescribing them and can only be given at hospitals.
But as I say, now 64, and the last couple years haven't had a crippling one. Just been rreplaced with these aura ones without pain.
About ten years ago I went into hospital for an emergency op and headache was starting just before - told it would be fine despite my concerns. Hah! i came round with a nightmare head and they did nothing, was crying pleading for painkillers, anything. Because i was in for the op couldn't/wouldn't do anything. They wanted me to go home but I couldn't move so they bunged me in ward corridor for another 24hrs. Felt so humiliated. (Plus worse still they let me wet the bed and left me in it while I was being sick... Swindon. Would rather die than go back there. I had to have someone do a 3 hour car journey to get my maxalts and suppositories to bring to hospital to give me some kind of relief to make the journey home)
jell: have you tried the sumaptriptan injections? I started using them because I couldn't keep anything down with the migraines, non stop vomiting sometimes for hours. Now I am having cluster headaches (no vomiting any more) the injections are actually the first line of attack, then oxygen which, didn't do anything at the hospital. You're meant to be able to self administer but I can't see properly let alone start fiddling about with injections when I am in the throes. My husband does it. With the migraines, they stopped working for a while. well, they would wear off. But since this mutation, which also means days rather than the 24 hours it used to be, I find that if I have one at the first whiff that it's coming, it really does stop it.
I had heard that before but didn't believe it. I can't think why but every single time it starts I think "oh it'll be OK, I'll wait a while, see if it gets worse, I'll just take a couple of aspirin..." and every time it descends in to the hell that you an I both know.
I understand your frustration about people who think they know what a migraine is!! My favourite is when they profess to know what causes them. Mine are totally without rhyme or reason, just like the arthritis pain and flare ups. With one exception: Alcohol. Haven't been able to touch a drop for about 2/3 years now.
yes I used to take the sumatriptan and vomit it up again! Sickness tablets the same. That's when I was given Maxalt melts - and the suppositories which were brilliant for the sick headaches, as sickness subsided, pain did too, Did you find when you were sick, had relief for a very short period before all started again? Not all headaches were sick ones, just the pain. I used to try to explain is as giving birth to an elephant trying to get out of my head. Too painful to even cry
I tried all the elimination diets but made no difference. I think it's generally accepted now that food doesn't cause them. Like you I stopped drinking. Fed up with people telling me not to eat cheese or chocolate as though it was my fault - they were the experts! So, I would eat a chunk in front of them to prove it rubbish!
I remember getting to the stage of not wanting to live anymore so am touching wood here but all I can say is that those bad ones 'appear' to have stopped and been replaced with auras and wonky vison!
So feel so much for you.
Sumatriptan - they were fairly new out when I was taking them and couldn't be bought over the counter and like you there were times they seemed to work better if I took one straight away but usually needed another (couldn't take another one within 24 hrs at that time, think it's less now?) No injections then.
just also to say if you do start having eye problems you must tell gp asap. I had all sorts of specific tests and scans at hospital, including an mri, to show not connected to Hydroxychloroquine.
yes! My optician appointment was mostly a waste of time where the drug is concerned because the scanning machine required is quite expensive and not available in your average optician. I don't remember rheumatologist telling me I would be seen in hospital to check my eyes but that was what the optician thought. I'm really annoyed about the itchy eye thing though. It's not painful but REALLY itchy and I've had all sorts of drops, prescription, over the counter but nothing really helps. And of course it's getting worse.
Actually I'm feeling a bit pants today. I'm struggling to accept or 'believe' my diagnosis. Because the GPs always were so dismissive it had become a bit of a battle to 'prove' something and now that I have it feels as if I've been crying wolf - if that makes sense. I hated being dismissed and was almost wishing for a diagnosis without fully realising what inflammatory disease could mean as it progresses.
Now I find myself wondering if every twinge is a sign of a worsening arthritis or my imagination, as I was so often told.
And the tablets remain on my bedside table, unopened!
Honestly jell, if you are still getting them try the injections. As I understand it it's not the drug that makes you vomit it's stomach stasis which meas anything that enters it including water and spit will be expelled. The injections would make me sleep when they were still migraines and that meant slightly less vomiting as I think I used to sleep through it. They are called Imigran Subject.
With regards to the headaches. My rheumatologist warned me it could give me headaches. I was concerned because I have a history of headache problems, severe ones. That medicine from the rheumatologist has not affected the headaches in anyway at all
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Newly diagnosed 64 year old with Rheumatoid Arthritis and Interstitial Lung Disease
Just had a hospital appointment could cry with frustration.....
Shoulder op & pain in (quicker to type everywhere) 😉 you might need a coffee or tea to read this as I do tend to write war & peace 🙄🤣
