So I went to see my RA specialist yesterday for the first time in 7 months.
I actually saw an RA nurse specialist who was more informed and knowledgable than anyone I’ve ever seen. He also had RA himself which meant he totally understood what it felt like.
So I had good and bad news. Good news is that my RA is completely controlled and I had my MTX lowered to 15mg a week while still taking hydroxychloroquine and sulphasalazine.
But the bad news was that he said I had fibromyalgia. Now help me out here. Fibromyalgia is really difficult to diagnose. It can often show similar indicators to thyroid problems (which I had removed when I was 21 after a tumour was found) and also RA. Fatigue, memory problems, aching, pain, constant headache, insomnia, depression.
So when the nurse checked my body, pressing on the 12 pressure points that are pain indicators and I told him I hadn’t had slept more than 6 hours in over a year and have had a constant headache for over 30 years, he was absolutely 100% convinced I had fibromyalgia.
He said I had to get my sleep under control and prescribed Amitriptylene.
Oh god. I have never felt worse on a single medication. I take it two hours before bed and within half an hour I can hardly stand I’m so dizzy. I woke up 3 times in the night, drenched in sweat, and still woke up at 6am. I now feel like I have really bad jet lag. Very drowsy, dizzy and nauseous. I hate how I feel on this. And the nurse said I had to give it 6 weeks. I don’t think I can give it a second night!!!!
Any comments would be welcome. Xxxx
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Jules13
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Good news you're so well controlled, I hope reducing the MTX keeps you there but the only way to find out is to see in a few weeks time, if you miss the few mg's difference, I really hope you dont't because that will be proof of the pud. Less good news you've had a Fibromyalgia diagnosis, though you don't seem wholly convinced. I'm not able to be of help there but sure those who have both will give their thoughts.
Amitriptyline can take some getting used to & the symptoms you describe are mostly listed as very common, dizziness, nausea, drowsiness, it's why we start on a low dose. Mine was 5mg & increased by 5mg monthly until I found the best strength for me, which is longer titration than most but my GP wanted to be sure I didn't take more to enable me to tolerate it better for my needs, it was a good plan! Which is maybe why the nurse specialist thought it would help you, though I don't know if it's commonly prescribed for Fibro, muscle pain was the reason my GP prescribed it with the added effect of helping me sleep.
I was also prescribed BuTrans patches at the same time as amitriptyline, another reason for having monthly reviews to increase/decrease doses. From them it was clear I couldn't tolerate the one evening dose & it wasn't helping through the day as my GP intended it to so went on a split dose & eventually found the best way on 25mg morning & 50mg evening. As I say it took a long time to get there, 5mg increments, but doing this I've not had any bad side effects. It's finding the best way for you as well but I think the starting dose is the key. I don't take my evening dose two hours before bed as recommended because otherwise I fall asleep in the chair, I take it half an hour before. It really helps me sleep, I don't wake groggy but I've been on it a few years now. My morning dose is lower because otherwise I can get a bit foggy headed & not happy driving with it any higher, I'm just not as sharp if you understand, but they definitely help with my muscle problems related to OA, (cervical & lumbar spondylosis).
What dose have you been started on Jules?
I hope this makes sense, not having a good morning.
It’s only 10mg but I can’t even focus I’m so dizzy. I’ve got a full days work and I feel like shit (excuse the french). My whole body is wobbly. If I move my head the whole room swims. I’ve got conference calls all day and can’t even read my notes. How can I keep taking this stuff?
If you want to try staying on it & willing to possibly still have some form of side effect initially (before your body gets used to it) you could start by halving the dose, the dose I started on. It's one of those meds that's worth persevering with if you can but I might be tempted to leave it a day or two before you try again. Usually after around a couple of weeks, maybe a little more, side effects reduce but you should have the drowsy effect from day one. I know we're not meant to self medicate but in this case you're not doing what that generally means ie increase the dose or frequency. Maybe try taking it when you've gone to bed, just thinking when the somniferous effect kicks in you're already in bed so can just drift off to sleep.
If you ask your Pharmacist where you get your scripts filled anyway she/he might have further suggestions.
It wasn’t the taking it at night it was the effect the next morning. I couldn’t walk I was so dizzy. Couldn’t focus. I cannot function at all. So how can I give it 5 days or 4 weeks? I need to completely alert for work. And driving.
I get it. Not to labour the point because I know how you feel but when it's taken can be so individual. Your response suggests it's better taken earlier in the evening & at a lower dose initially. I'm not suggesting you try it just that your body is holding on to the effect longer as your symptoms were in the morning so earlier dosing would be better. As my GP explained I needed to find the optimum time for me which is how my body coped but not every med suits everyone & you don't know til you try.
Hi Jules. Great about RA being controlled but the effects you describe from the amitriptyline sound horrible. I don't know a thing about this drug but wonder how you felt on 6 hours sleep a night ? Did you feel that tackling this was a priority ? I would approach sleep deprivation from another angle if it were me...I'm convinced the less drugs the better.
Sorry don't know about Fibromyalgia either. Reading about it, it seems a bit of a mystery.
I was put on amitriptyline initially after my FM diagnosis and I took it for some time (it is normally given as an antidepressant) but it seemed to make the brain fog worse (not good when working for a picky boss). I stopped taking it and the fibromyalgia didn't get worse. I seem to think I took NSAIDS after that. In my sixties, I stopped having the debilitating migraines and the FM hasn't been all that bad, but in April I was diagnosed with osteoarthritis and this has been cited as the cause of the excruciating pain in my knee and the rest of my leg. I was actually forced into requesting the use of a wheelchair when I came to a full stop in a music exam centre. Embarrassed! While I am not surprised to be told I have OA, I cannot believe this pain (suffered for ten months) is caused by it. It might be FM but the out of hours doctor who came to see me when I was unable to walk said I should have a scan of the knee. He had actually seen me using a chair to walk to enable me to walk to the door to let him in and said he thought there was something else going on. No-one will send me for a scan. When I hurt my back after a fall, no-one would send me for an x-ray either, but now five years later, the doctor who is investigating why my low haemoglobin at the moment, sent me for an x-ray and it shows a clear injury to my spine. Why can't my GP be as caring? We all know that the longer things are left, the harder they are to correct.
I'm sorry to hear that you have joined the FM ranks. What really helped me was myofascial therapy. It's expensive but you can learn how to help yourself through the therapists. Massage itself is only good on the day you have it.
I think I have pretty much been in remission for a while - in other words, the pain has been bearable so long as I watch what I do, but now, with the anaemia, the painful vertebra problem and the leg pain, it's hard to know exactly what is going on. I sense in you a similar confusion. We have to be as demanding of our doctors as a pregnant woman is. But it's hard when you are in the seventies! Enough said, I think. Good luck, Jules.
I’ve had osteo arthritis since I was 30 and have already had a knee and lower thigh replacement so I’m used to that sort of pain.
I think he only flagged the fibromyalgia because I was saying about headaches for 30 years and not great sleep.
I fall asleep fine I just don’t get enough of it but this medication is not for me. I only work 3 days a week but those days are full on and I’m presenting design work a lot of the time. Brain fog is not an option. Pain keeps you sharp sometimes but dizziness and being out of it is not something I can handle.
I’ve never been good on things like codeine because of how spacey it makes me feel.
Hi Jules, I would stop taking it if it’s making you feel so bad. It’s no way to exist feeling so crap.
Interesting what you said about the nurse being more helpful than your rheumy. I went to see a pharmacist and she gave me so much more information than my rheumatologist had, results of tests etc. I’ve found this whole process like going thru a maze blindfolded 😳
Yes I know. He was so knowledgable and so empathetic, which you don’t really get from specialists. Most specialists have terrible bedside manner so I would rather see this guy again than any specialist.
Saying that, I’m not at all convinced by the fibromyalgia diagnosis. Everything he described as symptoms, I have with thyroid and RA anyway. Hmmm.
HI Jules. I was prescribed Amitripyiline about two years ago by another GP in my surgery, she was horrified I had been given naproxen. Amitripyiline was the drug from hell for me. Took it about 5 pm went to bed at my usual time, couldn't sleep till till the last few hours then felt like a Zombie all day. I tried for 10 days and gave up. The dose was 10 mg. I went back on Naproxen no side effects and luckily blood tests for my kidneys all okay. When I went to the pain clinic last October for my severe back pain I was offered Gabapentin because I thought it was a similar drug I refused and was prescribed Duluxotine, my GP gave me the wrong starter dose and I was extremely ill for 3 days I was put off starting the correct dose. Eventually I did try Gabapentin, I was desperate !!!! my rheumy gave me the lowest starter dose at 100 mg and I eventully went up 1200mg, not sure I can go any higher as feel very tired, so still at this dose for now. I now understand this is going to be a controlled drug from the first of April. !!! It just shows how we all respond differently to medicatations. I do hope you find something to help you. X
I think you know if a drug is going to help. I had al sorts on it, terrible thirst, problems with passing water, headaches, couldn't drive. I have found chair yoga has helped me, I can't do normal yoga. The meditation side of it and the control of breathing is very calming. Have you looked at a Bowen therapist, my pain at the time was too great so I didn't have any further sessions, my neighbour and mother swear by it. I might give it another go as I may have to manage my pain without an operation on my back. All the best Jules let us know how you do. Take care. X
I meditate every morning and do my own sort of yoga. I can’t do a downward dog anymore because of my wrists but I can do most other things. I also swim which is very meditative.
I’m warning myself off the paracetamol and maybe that will help the headaches ironically. 10 years is a long time to be on 2000mg a day and I didn’t even realise I was doing it x
I think sometimes the drugs do have more side effect than they are worth. Funnily enough I take 2 paracetamol at night and off I go, but still wake a different times to go to the loo, as I'm retired I don't worry too much, I think somewhere in the night I get rem sleep so manage in the day. Incidentally I can't take opiate drugs, I noticed you mentioned this. You are doing well with the meditation, yoga and swimming, it's definitely feels better when we feel in some sort of control. I have just come back from my 6 monthly check at the tissue viability clinic, I had another Doppler test and confirmation I need compression socks for life, at least I got black ones !!!! I wonder how I'm going to get them on in the morning. All the best Jules x
Hiya, I take amitriptyline and have done for years and I really like it ~ well as much as you can like pain killers. I can’t remember any side effects that I had but it’s been a long time, so I may have forgotten them.
I think NMHs idea of lowering your dose is a perfect idea, to give yourself a chance with them as I have heard many people to feel rubbish at the start if you want to try to persevere with them. And again, as NMHs said, take them when nearly going to bed, not hours before.
Excellent news in regards to your Rd, but sorry about the added fibro and rubbish side effects you are having now. Good luck with whatever you choose
I’m on the lowest dose 10mg. I could always cut the pill in half but the whole point of me being prescribed them was to give me more hours of sleep. But I woke up 3 times in the night whilst on the amitriptylene with terrible sweats and dreams.
I’m not sure how to deal with the sleep. I stop drinking liquids after 6pm at night, and still wake up at 5am desperate for a pee. Sooooo annoying.
Good to hear about your RA. It's fab that you're getting the tip side of it. I'm only just there after 47 years diagnosed. Was born with it I'm afraid. However took them three years to diagnose. Anyway. Same as you have osteo for which I take risedronate. Also fibromyalgia as well as ulcerstivr colitis. They gave me amitriptyline but like you. Side effects were horrendous. So they gave me nortriptyline, which is not so powerful and doesn't leave you with a hangover. Bit since injecting Humira, my conditionshave calmed down.
Everyone is different, talk it through again with your RA specialists. Sometimes it's trial and error, sometimes it feels like it's not worth investigating with it further. All I can say I'm pleased I kept pushing because if I hadn't I wouldn't be where I am now. Hope you find a solution that works. Keep us posted. Have a good day.
Hi Jules, I’m on 30mg for nerve pain. Started on 10mg and was pretty whoozy for a couple of weeks then body started getting used to it. It’s def helped take the edge off of the pain. But we’re all different and sometimes your body just says no don’t like that one! Possibly try 5mg on a day that u are not working?... it has helped me sleep and read an article yesterday saying that lack of sleep heightens pain... you are in good company though as Lady Gaga has Fibromyalgia...good new about your ra... hope u feel better soon...🌷
I’m fine getting to sleep and don’t usually wake in the night. I just don’t get enough. I can’t seem to sleep until about 11:30pm and Usually wake between 5-6am desperate to pee. Then can’t get back to sleep again.
I stop drinking liquids after 6pm so not sure how my body still needs to wake up and go to the loo.
Hi I cut my fluid intake too and was told it’s counterproductive as it makes the urine too concentrated the bladder needs to expel it! I guess you can’t really win! M x
I have had Fibromyalgia for years before RA, that's the pattern
mine is 3am , a GP years ago, describe it being like floor boards when they have been walked on all day, at night they go back to normal, but because when you have Fibromyalgia we don't sleep right, normal, nothing can repair it self, so its like being driven over like a truck and then if you have RA its double wammy
Hi Jules! I have not written before but felt I needed to after reading your posy. I have been diagnosed with RA and fibromyalgia. But I am not convinced about the fibro. Apparently some of pain "cannot" be caused by RA. The rheumatologist told me I would startbto learn which pain was RA and which pain was fibro... I started on methotraxate and ALL the pain got better! Does methotrexate treat fibro then? Personally I feel fibro is not my situation, but everyone is different, right? I have worsenned slightly after that first great recovery, but nowhere near as bad as before starting medication.
As for sleep, I work with an amazing therapist who is helping me with my "sleep hygiene" and that helps a lot, along with magnesium before bed. My GP has also suggested Melatonin if needed but I haven't tried it yet. Taking my medication earlier in the day and making lifestyle changes is helping a lot - no miracle but no side effects either. Can let you know more if you're interested. And hope you feel better!
I take most medication in the morning with breakfast but the antidepressant (very very low dose) works for me better at night. I have felt shocking the last few days and don't know wether I'm just stressed about it and tired, but I feel like I've been run over.
So sorry you feel so bad! The therapist I work with is like a "mind body" guy who explains how much of a physiological reaction we can have to anxiety, stress and lack of sleep in particular. It helps for me to know that when I feel awful it is often a completely natural reaction of my body, and that deep breathing, sleep and meditation really can help. It doesn't make the RA pain go away, and sometimes the RA exhaustion just lays me flat. But feeling lile I am managing the mind/body reaction at least gives me a little edge - it's like taking the helm of my own life - sometimes the seas are so stormy it seems pointless, but when things settle down and the skies clear a little, it makes me feel better to know I have some influence in coursing my own path to health... Hope you feel better soon x
Hi Jules, it sounds as if you are not tolerating the drug and not everyone does. I was put on it quite a few years ago to help with my fibromyalgia and it didn't suit me but for a different reason than yours. It dried me out so much that I wasn't passing water, yet I was drinking non stop and as soon as I had drunk a glass of water, I needed another glass. It was awful. We were out at the shops one day and I had to keep going in and out of shops to buy bottles of water all the time. My mouth and tongue were so dry that my tongue was sticking to the roof of my mouth. Eventually I had to stop taking it (I tried it for about three weeks). If I was you I would ring up your doctor and explain what is happening.
I have fibromyalgia, Psoriatic Arthritis, Psoriatic Spondylitis & chronic headaches/migraines. I’m 31 (1 month away from 32) & my pain started around the age of 15. Around 19 I got the fibro diagnosis, but no one put the pieces together for an arthritis diagnosis until I was 30.
At my initial appointment with my rheumatologist he walked in after reading my history and said, “What if I told you I don’t think you have fibro, I think you have psoriatic arthritis?” He then did an exam and said he actually believed I had both. I’m not sure on the specifics of your situation, but I know I can tell a difference (sometimes) between the diseases, but that I do have both.
My arthritis causes severe joint swelling and inflammation, and with my fibro (especially during a flare) even brushing my arm up against a door as I walk past it is so painful and the pain last for several minutes. The fibro I often describe as feeling the way the flu makes you feel, achy and tender. The arthritis makes me swell, I get significantly tight knots that become hard and lose feeling & makes me “feel” each individual bone I have when it’s hurting. I theorize that the fibro is a result of the arthritis, but it’s only a hypothesis.
As far as the medicine goes, I have faced the same situation several times. I would try the medicine for a week (approximately) and if the side effects were still too severe I notified my doctor that I would not continue it. If a medicine is going to make you feel that bad, then it’s really not helping... it’s just switching which problems you have. I think we all tend to forget that WE are in charge of our own treatment. We listen to the doctors because we know they are educated and have insights we lack, but ultimately the path we take is up to us. If you do not like or are not happy with a medication, do not take it; there are options & ultimately the choice is yours.
I as well have had a headache every day since I was 15, which is going on 17 years now. I do not remember what it is like to not have a headache. I have also always struggled with sleeping. The pain inhibits my concentration and memory also, and I do feel down a lot about the way I feel and the impact it has on my life and my love ones. I just try to tell/remind myself that the world is not and cannot be perfect, therefore someone has to have this weight; God does not give us more than we can handle, & if he thinks I’m strong enough to carry this burden, then my curse is ultimately my greatest compliment.
I have found the best combination of medication for me involves:
-A biologic for the psoriasis & Arthritis (I use Remicade & I love it)
-A sleeping pill (I use seroquel which I have found to be the best. You sleep so deep you even get a few minutes before the pain kicks in & studies have shown it to have somewhat of a anti-depressant effect as well).
-Medicine for my ADHD (I use Vyvanse, which I greatly prefer over Adderall, & it helps with the brain fog from the arthritis and fibro.)
-Prescription strength lidocaine patches (They are expensive, but worth it. I also use over the counter menthol patches which I find to work greatly as well).
-Prescription pain medication.
When you have these conditions there is not one medicine/treatment plan that will work, you need a “team“. It just takes time to go through the different medicines to find what works best for you. I hope you get better along your journey and feel free to message me anytime with questions or concerns and I’ll help when I can! Also, I highly suggest keeping a medical journal to document when you have which symptoms, their severity, what the weather is like that day, your stress level, diet, etc. It really helps to connect some of the dots, see triggers and somewhat anticipate when your symptoms may be aggravated or flare.
I've never known the difference between RA pain and now Fibromyalgia because I never thought I had fibromyalgia until Tuesday. Every pain I've described to specialists has been part of the RA... stiffness, flu like aches and pains, inflammation. I've had a RA specialist for 2 years almost and they've never mentioned it but then my RA nurse says, "this is what you've got" How come it hasn't been picked up before. That's why I'm slightly skeptical.
I was feeling ok until I saw him. Now I feel shit.
My diagnoses were reveresed, but I always had the same feeling...is this what’s wrong with me? For years I only had the fibro answer and I always thought to myself “There’s more wrong with me than just that...I just know the way I feel isn’t all from fibro.” Psoriatic Arthritis is just tricky because it doesn’t have a specific test and I had no idea there even was a Psoriatic Arthritis, so I never thought a skin condition I dealt with would be the culprit for my aches and pains, much less to report it when discussing my pain.
When I first got the PsA diagnosis I couldn’t tell between the 2 either and I had the same doubts as you. When you responded I Googled the question and what I found was:
“One of the biggest differences between RA and fibromyalgia is inflammation. Fibromyalgia pain is not from inflammation. In RA, joint inflammation is one of the key symptoms. People with RA often notice that their joint pain appears on both sides of their body.”
(Found on Healthline.com)
Since my PsA diagnosis I have had flares I thought were arthritic but told by an urgent care doctor that it was fibro. I really try to pay attention and log (if anything mentally) the type of pain I have and I’m always researching each condition to help me understand what pains are from each disease. My joints in my hands, feet and knees being stiff are the arthritis, as is my hip bones being sore to the touch. When I casually and lightly hit my arm on a door that I pass by or when my boyfriend accidentally “kicks” me in bed and the pain radiates into a horrible muscle pain and lasts forever, I know that’s not how I should feel and it’s the fibro; I’m WAY overly sensitive. Because I’ve been in pain so long from such an early age and always theorized I had an undiscovered issue, I’ve relentlessly researched as much as I could and tried my best to pay attention to exactly what my body was feeling, where it was feeling, how it was feeling it and what triggers correlated with each pain. By doing this I’ve slowly learned (& am still learning) to distinguish the conditions and their symptoms. I KNOW I’ll never fully understand and know the difference, but by trying to I have learned a lot about my body and that is a major key here!
So to sum up my lengthy response, when you have joint pain and inflammation around the joint, it’s arthritis. When you are excessively tender, that’s the fibro. I would try documenting 2-3 (or more if possible) times daily which symptoms you have and external factors like stress, weather, hormones, etc. After a week or two look back and you should find some correlations that can help you differentiate the arthritis and Fibromyalgia. I hope this helps and if you do it I’d love to hear your findings! Stay strong!
I forgot to mention one thing. I get Xeomin injections (an injectable like Botox). It’s approved for migraines, and it does make a difference with my headaches. I definitely notice a reduction in severity and frequency. Sometimes I can feel a headache BEHIND the Xeomin (such a weird feeling), but nonetheless its working. I also get it in my TMJ, neck & back to help with a reduction of inflammation in those sites. It’s expensive and you have to try a while to get insurance to approve it, but the Xeomin company offers a patient savings program and are very generous based off your current situation (income, conditions, etc.). I highly recommend you looking into it! My doctor changed the way I view my pain when he told me “You are going to be in pain the rest of your life. No medicine will take the pain away 100%, but if anything gives you a reduction in pain, then it’s working, worth noting & worth sticking to.”
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Anyone got any ideas about what I should do now?
RA or fibromyalgia 
Fibromyalgia- confirmed 
Fibromyalgia
SCREAM, SHOUT, SWEAR AND STAMP MY FEET.
