I think I'm generally quite lucky that my mixed connective tissue disease is relatively under control. As I've had it explained to me, it's a mix of Lupus and Rheumatoid arthritis basically with the same general treatment as Lupus so I'm on 400mg plaquenil plus 400mg pregabalin for fibromyalgia and amlodipine for Reynaulds.
I have a full time job, and I even manage to do some things on evenings and cope with life generally with the support of my partner and my mum. But I'm still in pain. Every day.
It's mostly in my lower back - apparently it's my sacroilliac joints. Helpful to have a name for the bit that hurts but it doesn't help much. It's a stabbing pain, mostly on the right hand side when I'm sat down, when I walk, even a throbbing there when I lie down and try to sleep. Some pilates exercises are excruciating and the tutor has no idea why! Tramadol doesn't even touch it. Oramorph does at least send me to sleep nicely. But is this part of MCTD or something else? Anyone else got this very specific localised pain or is your pain more generalised? I get a bit of that too, and obviously the fatigue, but it's this pain which is driving me crazy.
My big question is: is this as good as it gets? How "healthy" can I ever expect to feel? Should I try further meds (if they'll let me...)? I fully understand that there isn't a cure and I'll always have the odd flare, but can you be painfree on a day to day basis?
I don't really know whether the plaquenil is "working" or whether to ask to try the next step you see! I have a six monthly check up with the rheumy in February, and I am planning the questions to ask her.
Thanks!
Jennie
Newcastle upon Tyne
Written by
Jennie_103
To view profiles and participate in discussions please or .
It depends from person to person. There may be others who are symptom free for considerable length of time but I haven't gotten there yet. Although I do have pain free days sometimes, I'm not entirely symptom free (like I can't breathe properly or I'm dizzy, etc). I hope I will get there at some point, I'm trying to do what I can to not trigger inflammation but I think it is a very long process and it also depends on each person's genetic makeup and seriousness of illness.
I know the pain you mention, I have it sometimes and I sympathise because I find it excruciating. It saps my energy and I can't really sleep when I have it. I use hot water bottle to take the edge off but not very successfully. But the pain comes and goes for me.
Try and take it easy a bit more and see if it makes a difference, I have slowed down the pace if my life a lot since I've been diagnosed, it is like I'm living my life on tip toes, so that not to wake up the wolf!
Hang in there, it does get better but try to take care of yourself and do less if you can. And look to reduce inflammation naturally, I.e. through diet, exercise (not Pilates, if it hurts, try something else that protects that joint, maybe swimming), rest.
I too have UCTD and have sacrolites too. It inflammed the lower part of my spine and my hip, pain was terrible and I was also unable to empty my bladder (reason unknown) though later they said I had a UTI with it too? I haven't got it at the moment though as I got prescribed anti inflamatories too but they took a while to work.
I too am on placquenil 400mg a day and took cocodomol for pain until recently but now not sure which pain relief to take or whether or not to ask for stronger meds.
I'm not working at the mo as I don't think I could just now....maybe when the symptoms get under control as at the moment it feels like I either have an infection or am flaring (hard to tell sometimes if it is both together).
I'm new to all this like you (well about 18 months in) so don't have the answers to all your questions except it wook about 6 weeks for placquenil to start kicking in and by 6 months it felt fully into my system.
Sorry I can't be more helpful, just wanted to say that I can fully sympathise with the sacrolites as it is intense pain that in my case seemed to affect all my pelvic region, lower back and pain in hips (think it is the key joint that holds things together).
Yup, have had a run of UTIs myself - put me on 200mg trimethorprim to stop me getting them, then had a minor op to wash everything out. No further problems there thank goodness.
I moved up from co-codamol to codeine and paracetamol separately so I could create stronger co-codamol if that makes sense? Then tramadol and oramorph. Neither completely kills it and I can't do any work on either but it does help for going to sleep.
Thanks it is always helpful to know what works for others as it all just seems to be trial error and bumbling through it at the moment. Well.....today is certainlny a day when I need to sing.....Always look on the bright side of life, tra la tra la .......sounds a bit potty I know but it kinda helps me xx
My doctor prescribed Amitriplyline for the pain night. Since then it's made me have perfectly good night sleep ask your doctor it really changed my life as before I used to be miserable through the day through lack of sleep.
Yes, I did amitriptlyine for a while, but I had to keep increasing the dose to get the same effect and I didn't like the dopiness on a morning. Plus, I lost a stone in weight when I came off it...
Sleeping better now I think - I've even had a couple of nights in the last couple of months where I slept right through! I'm sure ordinary people wouldn't celebrate this as much as we do - but to me, it's an achievement!
I take Amitriplyline 4 at night for pain and help to sleep, but they don't make me sleep i am up at all times of the night, i wish i could get a good night sleep might be able to do things more easy during the day time.
Hi Jennie I have had Lupus all my life though diagnosis didn't come till I was 41 I'm now 62 All I can say is that there will be good days and bad days and bad weeks and months .I do not wish to alarm you but make you aware that although it took me a long time you have to learn to love yourself be kind to yourself and learn to say no If like me you are a positive outgoing person then coming to terms with your limitations may be difficult I promise you learn to listen to your body and rest when you can I found Plaquanil most helpful for me but have so many other problems that needed different meds I have always advocated a good diet and after doing an elimination diet found out what foods trigger intense pain and so now I eat no red meat some citrus foods tomatoes gluten msg and for me dairy free also too much sugar in the diet can cause upset I think that if you are fairly stable with your plaquenil then I can't see the rheumy giving you Steroids which is the next step I have only just been on them for 4/5 mths and although I feel great they have a lot of bad side effects I do hope that you continue to stay relatively stable and one last thing do not allow stress anywhere into your life is this exacerbates your symptoms no end I read an amazing book where it stated negative people drain your energy while positive people give you energy So I over the years I have learned to stay away from anyone who drains my precious energy (including family) harsh as it is and my life is now surrounded with unselfish positive friends and family who understand when I can't just drop things and rush to them .Prioritise I have also just been on what is called the Rivers Programme run by the NHS nationally and found it to be most helpful Take care and I will keep an eye out for your progress x
It's really tough, this sort of lower spine pain. I've been managing it for many years now, and can really feel for you. My rheumy and my PS (consultant pain specialist, who is also an anaesthetist), my gp and my osteopath believe my version of this is a mixture: partly SLE/MCTD, partly hypermobility, partly slight endometriosis, partly due to 1 or 2 falls years ago, partly due to similar pain in my upper spine, partly having been a gardener professionally for years, partly who knows what else. I'm now 59 and have spent most of my adult life researching my spine pain and trying flippin everything around: Rxs of all sorts, alternative therapies, diet etc etc. So, the attitude of my drs & co makes sense to me. This sort of pain often has several things aggravating it. Sounds to me as if you have understood this and are doing a good job of trying to manage your pain, so i'm struggling to imagine what can I really say to be helpful?
Well, anyway, For one thing: I think you have a grrrrreat attitude: I like the tralala trial & error approach: it has worked for me! And, whatever, here is a list of what has made the most diff to me over the years minimising my predisposition to scaroilliac/lower lumbar/ pelvis girdle pain....and the following was all I could do until I was finally diagnosed fully in 2010 and put on plaquenil which really really has been the icing on the cke for me, but I still need to do this other stuff to really consistently minimise my lower back pain....and yes it does flare up when I have, say, an infection (i get a lot of them):
The Alexander technique
Bilateral facet joint denervations (performed in hosp by my P S, permanent ie not nerve blocks)
Anti-inflammation diet & supplements
Tempurpedic (sp?) mattress and pillows
Memory foam seat wedges everywhere especially in the car & at a desk
Sitting in upright chairs, or better yet on a saddle stool (I found a great make that has a wobble base that helps with core stability)
I am so pleased to hear that it is not just me! Well, not entirely because I wouldn't wish this on anyone, but it is reassuring. The Alexander technique is something I have been considering investigating so I will move that up the list.
I agree that lying flat with a pillow under your knees really helps for some reason. Again, glad that's not just me. Even better - triangular pillow under knees! I also have a wonderful office chair which I got as a student through a grant and I have now brought to work. It makes all the difference in the world. Haven't tried a saddle stool but I will now investigate that too!
I had facet joint injections once before and found them agonizing - more painful than the kidney infection to give you an idea - but they were only putting local and steroid in to see if that helped. It worked for about a week but totally wasn't worth it compared to the agony of having it done. Interesting to hear there's a more permanent version....
I too have a lot of lower back and hip pain. I have been told by my physiotherapist that I also have unstable Sacroiliac joints. I have a Connective Tissue Disorder called Ehlers Danlos Syndrome. I was falsely diagnosed with Rheumatoid Arthritis and even had a false positive for Lupus before finding out that I had EDS at the age of 35. I am now 38. I have always been hyper mobile and what I thought were hyperextentions my geneticist told me are actually partial dislocations. I found out that I partially dislocate multiple joints on a daily basis. This causes inflammation and ongoing pain. Like you I was relieved to finally have answers, but discouraged that there is no cure. I am also interested in learning about what others have found that have helped with their lower back pain. There have been times where it is almost impossible to stand it sit, but other times I can walk without a problem. I hope that you feel better soon. Gentle hugs.
Being a male it might be different, but I have the spine pain that travels all down my leg etc, the only thing that I found that helps is sleeping on the floor. We have a memory foam mattress and since having this problem with my back I can no longer sleep on it. If I do I cannot get up in the mornings without great pain that takes nearly all day to go, even with all the strong pain killers that I am one.
I have bin having same it first start of wiv me being not feeling down one side n all reflexes had gone in my right arm n right leg n I cudnt move then I got feeling back n then I got pregnant n it happened when I was 20 weeks n still now I cant walk n my leg numbness feeling n then my back started getting sharp shooting pain goin up my back I cant lie on my back so I sleep on couch sitting up n I cant travel wiv out screaming n crying over bump in road I cant even go shoppin in wheel chair wiv out shouting out coz bumps on floor I am in agony n not still not show wat it is coz they did lots tests now just got to wait for mri scan but I have to b put out coz I cant lie down at all I just hate not knowing wat it is n I on steroids n I am on lots painrelief such has pregabalin n ibuprofen n sum others n I hav only just start wiv headaches all down on right side n hurts my eye n face when I hav them its reli bad
I am also struggling with pain around my pelvis. Osteopath has helped to relieve some of it, but it's still extremely painful to walk or to stand. I'm better sitting and not too bad lying down, although the pain can wake me in the night sometimes. I've been on plaquenil for years, also steroids and a cocktail of other drugs including azathioprine. The steroids help a lot at a higher dose, but now do little (I think) at a maintenance level (5 mg/day). Osteopath suggested amitriptyline, specialist is suggesting methotrexate. Any advice which to try, anyone?
I read this and just about teared up! Same!!! I was diagnosed with MCTD 4-5 years ago. I have seen countless rheumatologists and all they want to do is put me on drugs that end up making me ever sicker! I started on hydroxychloroquine and it made me nauseous and dizzy and was even vomiting on it. Then they switched me to Sulfasalazine and that was a nightmare! Horrible nausea and dizzy spells to the point that it felt like I was on something. By the 3rd Rheumatologist, she wanted to put me on Methotrexate and said my hair might fall out, I can’t drink or get pregnant…..um, what?!?! Like I already feel awful, why am I taking a med that’s going to make things worse?!? I ended up going back to my Primary Care Physician because I love her and she listens to me. She put me on Low Dose Naltrexone. I think it’s somewhat newer in the med field, but very interesting when u look into it. High doses are to help with alcohol/opiate withdrawal, but low doses are showing promising results in autoimmune patients. I’ve been on it for over a year and I like it the best out of all the meds I’ve tried. No side effects and less flare ups. It does take time because u start on a very low dose and gradually move up. Anywho, on ur pain….same!!! I have horrible low back pain and tailbone pain. I have horrible pain down the right side, down my leg. I have numbing down my right arm and leg….for 5 years now! It’s not MS, we’ve now done 2 rounds of MRI’s and they’ve ruled that out. I have some doctor’s saying these are autoimmune symptoms and others saying they are not. Ugh! There’s never a straight answer! Anywho, they did figure out that my tailbone was dislocating. I guess because my tendons/ligaments are so weak because of this dumb disease that they can’t keep my tailbone in place. I have asked myself the same question at least 100 times….is this as good as it gets?!?! Like will I live like this forever??? I’m always in pain, it’s just…am I at a level 5 pain or 10? I’m never not in pain. During flare ups, I will lay in bed with throbbing joint pain. I keep hoping and praying that some xray or lab or test will show something else and the doctor will say “we figured out the problem and can fix it!” But that never happens 😢 Then I saw ur post and thought, wait….there are ppl like me out there?🙌 I am doing everything to help this disease. I’m gluten free, I’m on an anti inflammatory diet, I barely drink alcohol and I workout 5 times a week. Working out helps a ton! When I don’t, the pain is easily 10 times worse! But it’s also extremely hard to workout with the amount of pain this disease comes with. Once u get into a routine, it really does improve the quality of life. When I run, I feel no pain and it’s so amazing. 3 things I’m doing that may help. Get a tens unit. This thing basically massages your back all day! U can also buy bigger patches to go with it to cover more surface area. I literally wear it every day at work to get through the day. Then there’s NRF2. My doctor friend recommended it and said it can help reverse autoimmune symptoms like nausea, fatigue, brain fog, joint pain, etc. Then there’s Modere. I also have Hashimoto’s and that makes my toe nails fall off 🤦🏼♀️ so it helps tremendously with nail/hair growth and joint mobility. Oh and I guess I should add I use CBD for pain and sleeping. I will not take pain meds because of how addicting they are and honestly, they don’t help at all! I hope some of this helps, but if it makes u feel better…u r not alone! This disease sucks and it’s a challenge every single day! But I’m over her in Texas thinking about u and so glad u shared ur story because I finally feel like someone gets me! Take care ❤️
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ouch! Painful feet and legs - any ideas? Is this part of lupus or something else?
Back pain and surprises
Pelvis, hip, lower back and coccyx pain 
Is anyone on plaquenil only? And is it controlling symptoms?
