New here, need perspective on chronic pain....
edited 1. Jun 2013, 12:15 in Living with Arthritis archive
Hello and thank you for your forum. While I'm new here, I'm not new to arthritic disease. While it started in one joint, a wrist which was bad enough, the arthritis spread to the other wrist and then speedily spread to all my joints and back. I worked despite the pain until I started snapping at co-workers and making dreadful mistakes. "Taking some time off" grew into worsening symptoms and three years since I have worked, though my job still waits for me. I'll try to keep the story short, but it has been a very long seven years since this started. Unlike friends with RA who can point to swollen joints, I don't have much swelling, look very healthy and youngish for my age. This is not really positive as it's extremely difficult to get people, including doctors, to believe the level of pain I'm in. I've been diagnosed with fibromyalgia despite having no tender points. Recently, a rheumatologist diagnosed seronegative inflammatory arthritis and has been wondering if I have psoriatic arthritis (family history of psoriasis, but don't seem to have it consistently myself). Really I have forgotten what "normal" was like and always get "used" to the next level of pain this thing throws at me. The previous pain-level always looks really inviting when I'm into some new torture. I'm afraid this translates into being pretty ineffective at conversations with doctors regarding pain and function. I know full well the danger of being seen as a drug addict, so I don't tend to ask for more pain relief. I already take a huge quantity of pain meds as it is. I have been on methotrexate and hydroxchloroquine for 4 months and still have 2 serious flares a month. I have in the last two weeks increased the meth dose and am sooo sick after I take it I'm really wondering if it's worth continuing with it. Doctor rheumatologist says I have improved enough (I said 15-20% improvement) at 3 months to warrant staying on it but I really feel like I'm failing the treatment; no possible reduction in pain drugs at this point. I'm still having horrible all-joint flares that last a week or so. I usually just write this stuff in my own diary as I don't find talking to "normal" people helpful at all. So I thought I would try your forum and see if there is anyone out there who has a similar problem, or, a psoriatic arthritis, or Ank. spondylosis sufferer for whom this will sound familiar? Thank you for reading my story. Best wishes to all, Anna
kentishlady Member Posts: 809Hello Anna. Am afraid I can't help you a lot as I have OA with my back and one knee affected, but I am sure others will be along to give their advice and support. I do hope you can sort all your medications out soon. I have problem with meds too. I get such horrid side effects from the stronger ones (which I really need), so have to stick with paracetamol which are, of course not very effective for coping with chronic pain.
I am in the process of being referred back to the Pain Clinic once more for possible injections to see if they will help.
I do hope you will manage to get things sorted soon, and in the meantime welcome to the forum. You have definitely come to the right place for support and advice as we all understand the problems each of us face.
Take care. Beryl0
lizzieuk1 Member Posts: 302Hi,
You've come to the right place there will be plenty of posts to come don't worry!!
I have ra and have had various meds over the years when I was on meth tablets they made me pretty yucky too, I switched to injection and increased my folic acid to 6x week and that helped a lot though unfortunately the meth stopped working for me, u could ask to try the injectable??
The fact they couldnt diagnose u sounds like it could be sero negative arthritis which i think is v difficult to diagnose, like you I have a relatively low level of swelling but loads of pain and stiffness in my joints I am rheumatoid and anti ccp positive though, and look healthy and (hopefully) young still!. You really have to keep pestering the docs as if u don't tell them they can't know how much pain you have. I think swelling varies a lot as do the inflam marker levels but neither really correspond that well with pain levels, I think many on here have to take a fair bit of pain relief on top of other meds so ur not alone there it is horrible taking them but constant pain is worse just as balancing act for me really. Depomedrone steroid helps me - have u tried that? Not ideal but might give u some rest bite from pain for a bit.
Well hope that helps a bit and we're here when u need us. Xx0
hileena111 Member Posts: 7,099Hi Anna
I'm sorry I cant help ...I have OA in hips, back, ankle, neck etc along with kyphoscoliosis and spinal stenosis.
There will be people along to post soon....you'll get some answers.
Hi Anna and welcome from me too. Many people on here have found it can take ages to het a diagnosis if they don't have classic symptoms. The good news is that, whether sero-neg or PsA, the meds are the same and you are now taking them though they might not yet be working fully for you.
They are intended to hold back the disease and prevent its worst effects. There isn't necessarily a huge reduction in pain but they will help to stop the pain getting worse. Pain is different. Your Gp can prescribe pain relief but different people find different thinhs helpful. You could ask to be referred to a Pain Clinic as many find them useful.0
snowdrop123 Member Posts: 41Hi Anna
I'm new to the forum too but (unfortunately) not new to living with pain. I have OA in my back and hands, mainly but I can't cope with the side effects of stronger painkillers than paracetamol which just don't do a right lot for me either. I've recently had an injection in my right thumb joint and that has helped me a little. I hope you find something that helps you soon and there are lots of people on this site who can sympathise with your situation.
Best wishes xx0
Thanks very much for your suggestions and comments. I've tried a few things, like cortisone injections; now if I have these in all my joints !! I was prescribed oral prednisone by a GP and then left on too high a dose for a few years. My current rheumatologist nearly fell off his chair when he saw the dose I was taking. Coming off it was horrible as I flared severely for months. At least that helped secure an inflammatory basis for my symptoms and a partial diagnosis. I also thought prednisone gave me some relief initially, then really wasn't doing much to control symptoms. Now I take a pulse dose periodically if I'm very desperate to get the pain level down. I try not to do this because of the length of time I've taken it already (osteoporosis). It has side-effects for me that I've grown to really hate. So I'm pretty desperate if I take it, but it does work in the short-term at least.
I appreciate the support and knowing you are all here; so glad I found your forum. From reading your posts it seems I need to get my head around lowering my expectations for methotrexate and just be grateful if it doesn't get worse. I hadn't thought about that before. Also, I think I should be glad I can take the variety of pain meds I can. You'll all think I'm an addict if I tell you the full list. I'm not and I do try limit what I take. I really can't imagine only being able to take paracetemol/tylenol. I'm so sorry, that sounds awful. My pain is bad enough despite all I take.
I noticed this winter that I really reached my limit for enduring this thing, so I'm very glad to have found all of you. It helps having others to talk to.
Thanks and a big hug (gently) to all. May your day have less pain in it.
barbara12 Member Posts: 21,280Hello Anna
And a warm welcome from me, like someone else said getting a diagnosis can take quite a while and be so complex...its rotten when you have a lot of pain.
Sorry I wont be much help has I have OA , but now you have us to talk to that in itself will help.
I do hope you get some answers very soon , you take care xx0
Dawney Member Posts: 1Hi I'm new on here I have alot joint pain hands knees back hips the list goes on lol I'm in early stage going through hosp visits doc put me on naproxen to help why tests are being done the pain is unbearable sometimes I was such a strong person before and hate not being able to do all that I done b4 not saying I can't do it but pain prevents me just would like to be normal again lol
Thanks for listening0
Hello Dawney and welcome to the forum. I hope you'll soon get a firm diagnosis but it can take time. However, if, as you say, you are a strong person then you'll cope and we'll be around to help. If you've anything you want to ask just start a new thread. Good luck!0
Hello & welcome Anna,
I have Severe Chronic Plaque Psoriasis, PsA, OA & I also have the deep pleasure of living with severe Fibromyalgia too
Wow it's hard going isn't it!! I'm on 30mg Methotrexate to treat the Psoriasis & PsA, I'm very lucky & don't suffer any sickness from it & I only take 10mg Folic Acid.
If your Rheumy has diagnosed FM have they put you on Gabapentin or Pregabalin?? If not I'd ask to discuss it asap. FM has now (in USA) been confirmed as an Immune Disorder but it still needs neuro treatments to help lower our pain. Those 2 medications are to treat neurological pain & most people do get some relief, others a lot but of course some don't get any benefit from it.
For pain & inflammation I'm on Ibuprofen, paracetamol, Tramadol SR & Butrans patches but I know a lot of people with FM alone that take much more than I do. Please don't be embarrassed by wot you take all of us are individuals & need differing levels of relief.
I hope that the methotrexate kicks in soon for you, You may need a higher dose down the line tho. Coz of it I've been suffering from having such a low immune system. I'm on my 6th chest infection & this one has lasted for weeks!! I'm now in a huge PsA & OA flare I can only make it to the loo & back so I've had no antibiotics or steroids for a couple of weeks & a GP told me over the phone they won't visit as I'm in my early 40's & I'm not urgent as I've had it off & on for 6 months ... Furious isn't the word & I'll be letting my own Dr know that wen I'm well enough to walk & drive again!!
Hang on in there Anna, you will get help. Like you've said, talking to others with similar problems really does make things more bareable!!
Big fluffy hugs.x0
Thank you. Do you find your Psa and fibro flare separately, or always at the same time? You're the first person with PsA I've talked to, so I really would like to hear your story. I seem to only get 1-3 days between flares and it's been like that, with each flare worsening, for two years. At that time I had two wonderful flare-free months. It's very intense with all joints involved. I have lots of nerve pain and had severe neuropathy with this all started three-ish years ago. I do take gabapentin (lots) and it has made a huge difference with nerve pain reasonably controlled. I have a very hard time differentiating all the different pain sensations especially when they're all happening at once!
The doctor kind of surprised me asking about family history of psoriasis. I hadn't even heard of PsA two months ago. My mom had psoriasis. I have rash on the backs of my arms but I don't think it's plaque psoriasis. It blisters sometimes. I've never asked about it; I've had it "forever" and it doesn't bother me. Now I wonder and will ask my GP to look at it next time.
The methotrexate is harsh but the disease is worse. I see others, in my locale, being pretty functional with their various problems. I find myself completely slayed by this thing; so much pain in so many places! :shock: I feel like a big wimp
I truly hope your problems are under reasonable control or will be soon. Lung infections are horrible. Thanks for your post and take care of yourself.
big gentle hug back to you (and everyone too!)
I forgot to ask where you read about fibro being confirmed as autoimmune. I'd like to read that.....Anna0
Anna I'm SO sorry for such a late reply. I've been in hospital with a suspected TIA. Mri today, it wasn't a Tia but they 'found something' so as an outpatient thats being investigated.
This is the article: http://m.exponent-telegram.com/online_features/health_and_wellness/article_cb57f39b-f852-5367-88a1-ae786336cafd.html
I've had it all flare together but also separately too. I'd suggest trying a meditation technique, you relax ure whole body & then scan ureself (in ure mind) from head to toe. It really can help you to feel the difference between the different types of pain. It also calms you & I found it easier to breathe thru the pain during this time too.
Ure rash that blisters could be pustular psoriasis. You ought to see ure GP about it tbh. It can't be cured but can be treated!! Has it got any better or worse on mtx?
As ure Mum has psoriasis it does make sense of y uve got PsA.
My Nan, Mum, sister & 1 niece have/had Guttate Psoriasis, any form of it can lead to PsA.
On my 25th birthday I was chatting to my parents outside, I had tonsillitis & got sunburned, I came up with awful looking scabby patches on my arm n leg I got burned on. My gp sent me to a Dermatologist & within a month I was diagnosed with Plaque Psoriasis, I get it EVERYWHERE so its classed as Guttate too coz plaque should only affect the limbs.
Unfortunately mine didn't respond to treatments, even UV would burn my skin within seconds. It took me many years to agree to mtx as i was a blood donor & on the bone marrow registry. Then the PsA diagnosis came & as they dont know if it passes thru blood i wasn't allowed to donate so i agreed to mtx. This all took 10+ years, my own fault but i had no idea i had PsA. It felt selfish & vain to take meds that would help my psoriasis but would mean i couldn't donate.
My psoriasis are SO stubborn so the dose is about as high as i can go.
I'm not too sure wot else to tell you but please feel free to ask me anything.x0
Debbie, so sorry to hear that you've been in hospital. Are you feeling better? Did they help with your chest infection too? Sounds like you're have a very rough time. Feel better soon, ok.
Thank you for your help and the link regarding Fibromyalgia; very interesting. I'll try your meditation technique. I try to do this regularly but find I don't even remember or care while I'm in a flare. I really have an inkling now that there are two types of flare happening with me; one is strikingly joints, the other feels like a migraine (sometimes with a headache sometimes without) coming on but in a couple of days is widespread, I can feel it spreading through body parts, and feels like all my tendons, ligaments and nerves are aching. No tender points though, excepting joints, when they flare are tender on the undersides. I have muscle symptoms too, mostly twitching, cramping and ischemia when I walk. Sometimes flare together, recently more separately (bcs of mtx?), so I've been able to tell there is a difference. I've been told it may be enthesitis as I sometimes have the dactylitis that goes along with that, but since I've also been told I have fibro., I really don't know. I do sympathise (a little) with doctors trying to figure this out but really, they don't have time, or motivation to listen to this much detail. With all my joints and soft tissue pain, who could figure that out? To me it's important and honestly, I think I've learned more since I arrived here at your forum than I have in my years visiting doctors. I find it helps me cope if I can understand the process at work. Sorry about the length of this and all the detail :oops: , I just don't get to talk about it much (well, ever).
Interesting that you mention pustular psoriasis, It sounds like that's what my mum had. Her's went away with chemo for breast cancer. My poor aunty had it all over her whole life. She was never treated except for vit B12 and meds to help her sleep. Mine is somewhat different and some parts have improved on methotrexate, others not (yet?). I have it chronically in a few spots, then others like hands, wrists and scalp it pops up only every few years so I just thought it was a contact eczema. It never occurred to me that it could be psoriasis. I was always relieved I hadn't inherited the family skin problem
No worries about late replies, I'm not so great about prompt replies either. First thing is taking care of you, so I do hope you are feel better soon. Gentle hugs,
Debbie, I forgot to ask you about your TIA symptoms; what were they like? I have also had a few suspected TIA's (no scans done) which were ultimately put down to Raynaud's by my old GP, though from my perspective the symptoms were extreme.
Thanks, I'm fine but I didn't cope well with an hour in the MRI machine yesterday afternoon. I had tears running down my face the entire time ... Guess I'm more claustrophobic than I thought.Lol
My symptoms were a numb tingling sensation in the left side of my face, it involved my mouth, tongue, throat & neck too. The CT scan suggested no TIA but there is a lesion hence the MRI for a more in depth look. I get the results in the morning. I'm shocked uve had suspected TIA's but no scans ... I'd have gone nuts. How worrying for you (((hugs)))
Tender points are all over, front & back of ure body. They usually don't diagnose FM without 11 of 18 tender points being affected. Are you sure you went tested?? I shot away (forwards) wen my 1st one was touched.Lol It was my shoulders. but the 1st 11 she tried were spot on so with my history ... Insomnia, depression etc etc I think my rheumy thought it was a no brainer.
If you have any hypermobile joints I'd request being tested for EDS as its very similar to fm. Please remember these are just suggestions & I doubt ud be given an fm diagnosis lightly, many ppl wait years for one.
Re ure skin id definitely ask to see a dermatologist, They'll diagnose you & give you the correct treatment. Mtx may not treat it, I honestly dont know hun, sorry.
Pain from PsA can also be in tendons & ligaments ... Helpful huh?Lol It affects them, making them swell & wear bone away so it thins. I get it in my ankles, hips, cervical spine & hands. It's possible I get it else where too but I haven't been x-rayed for ages, I've got osteo in my knees, lower spine n hips. My hips are unlucky it seems.Lol I need to add it looks likely I've got more than one of the PsA types as I have cross over symptoms of a at least three so I'm not certain if the tendon & ligament involvement is relevant. It's all so blooming complicated & I don't want to suggest things that may confuse ure own diagnoses more than I already have!! My finger nails have psoriasis but my toe nails have been clear for a few months
The pain from fm is different for everyone. Some describe stabbing pain, tingling, toothache (I get that one, aaarrggghhh). The list goes on so its really hard for me to say anything about ures. I find it can come in waves or constant & even no pain at times, it's very odd!!! I'm glad ure able to feel the difference now
Oh, it's very possible that the mtx is kicking in, it'll hopefully calm ure flares down a lot so they become less frequent!!
That'll have to be my lot today, a migraine is on it's way again
Sorry I was jumping backwards & forwards, I'm struggling keeping things straight in my head (fibro fog).x0
Oh the fibro fog! Ugh. Sorry you're having a tough time.
I don't think I could do an hour in an MRI machine :shock: Sounds horrible.
Don't worry, I won't think you're diagnosing me. I find learning about these problems really helps me. Right now I think I'm learning most from talking to other sufferers. I've done lots of reading about all the various diseases, except the two I'm being investigated for now , PsA and AS. I thought they were out of the question for me.
Your symptoms really struck me as quite similar to my own. I've often tried to characterize the different types of pain I have, mainly so I could describe it better to doctors, and, as you describe, sometimes it's like toothache pain all over. My hips are very unlucky too.
The weird neuro stuff that happened to me has been short-lived. In the worst one, my hands turned bright red, itchy, painful, I lost my sight and then ten minutes later lost consciousness (and other things I won't describe). It lasted several hours then was gone. I've had numbness, tingling and a drooping left side of my mouth, and various visual disturbances all at different times and short-lived, very scary. I should have really questioned my doctor more (and gone elsewhere!). He thought it was caused by vasospasms. The GP I have now would definitely have sent me for a scan. It's been over a year now and I haven't had any more of those episodes.
This same GP first treated me for inflamm. arthritis, then decided I didn't have have it and diagnosed fibromyalgia based on one tender point :x . I knew the 11 out 19 criteria for diagnosing it, so he really lost me and I found a new doctor.
I do have a lot of neuro symptoms and my brother has a serious neuropathy, so I don't know for sure what it is. I take gabapentin and that seems to have helped some symptoms. I have lost power of memory, concentration and nothing seems to help that except writing everything down. Rheumatologist has been great but has concentrated on getting the joint problems under control. I'm happy with that. You're so right it's very, very complicated. Unfortunately I got some bad advice from old GP and stuck with him for far too long. It's prolonged an already long process to get diagnosed.
I'm off to GP soon for a check of the skin. I woke up this morning with a patch of sloughing skin and pustules on my foot, so maybe the rheum. will be right about PsA.
Thank you for your input. I appreciate you taking the time, esp. when you're not feeling very well. Wishing you well with the results of the MRI.
Ure more than welcome
I always feel that offering others an ear, shoulder etc can be of huge benefit to them & myself .. It's my way of thanking those that helped me in the beginning. I know a lot more about fm than PsA etc I run an online support group for it where as I joined here to learn more about PsA & OA as i know my knowledge is too limited & i wasn't really involved in my care which is terrible. Like you I think the more info we have the more able we are to cope
Re ure Neuro involvement, have your Drs looked at Lupus SLE? Just a thought!! These things are scary & I'm really sorry you haven't had such serious symptoms checked out properly
I'm really glad ure gona ask ure Gps opinion about ure skin. I had glandular fever a while ago & had to stop mtx... I ended up with pustular on my palms, plaques from head to toe, inverse in creases & plaques on the soles of my feet, i was a right state!! The pain was ridiculous & it felt like my skin was gona suffocate me, awful time & I'd hate for you to go thru anything similar!!
Remember that you can get PsA without having psoriasis too, with ure families history it would surprise me if it's not PsA, sorry!!
I'll let you know wot the neurologist says about my brain, assuming they found it!!Lol x0
maria09 Member Posts: 1,905Hi Anna
I've just come across your post
Welcome to this great site if it wasn't for the help and support I wouldn't have got through these past four years they have been hell to say the least!
I have OA and inflammatory arthritis although as yet the exact type is not know but I'm sure now it's auto immune condition as my daughter was diagnosed Ulcerative Colitis last July so my rheumy says it explains a lot!
All my joints are affected I don't have a single joint that doesn't hurt my feet and hands are the worst and next thurs I'm having surgery to 2nd 3rd and 4th toes as although I had my big toe fused. 14months ago it didn't help the pain in the 2nd toe and X-ray shows further deterioration since last X-ray so back to theatre again!
I ended up off sick from feb last year and realised I could not return to my job as a staff nurse on a very busy heavy ward so managed to go down the ill health route so now from 13/3/13 I'm officially retired
What des make my blood boil is when I get told how lucky I am to be retired!
How is it lucky when I had no choice! I would be rather be healthy and well working full time than constantly in pain and feeling exhausted! People just don't get it and I get so frustrated!
Sorry for the rant
I've got Rheumy appointment at 11 today so I'm going to ask what sort of inflammatory arthritis I have
I hope you are feeling a little better
I don't have much info re the MRI on my brain as it was a pulmonary Dr not a Neurologist!! He can't read a brain scan, didn't know where the problem was etc etc etc All he could tell me was its a Cyst & 1 1/2cm in size.x0
Did you get any answers from your doctor? Sounds like you are in the same boat as I am. Never need to apologize for ranting; I think we've earned that right having to go through all that we do.
Being told I had to retire has felt like being handed a jail sentence. It's like being told you will never be normal again. Oh, joy! What's great about having fatigue and pain so badly all the time that you can't think of anything else?
So frustrating as you say, that the only people who truly understand are others going through similar things. I've really come to the conclusion that you do have to have gone through something horrible physically to "get it". Or at least be open to the possibility that you can't understand. My current doctor at least seems to be in this latter group so at least doesn't resort to calling it "in my head". I really understand your frustration here!
Debbie I hope you're feeling better....... Scary to hear they've found a cyst. I really don't know what that will mean for you, surgery? Meds? I hope nothing too invasive. Really efficient to have a pulmonologist read your MRI :? Does a neurologist at least give it a look too?
Thanks for your posts. Hugs to all.
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