I'm quite new to this web site and was given some good advice and some caring support the last time I was on here. I explained that I have had psoriasis since 17 and all sorts of pains for many years but mainly very extreme pains in my ankles when I was a young girl from 19.
With two MRI scans behind me and even a nerve conductor test (which I passed) and met with either baffled specialists or rude ones. I also said that I suffer from either parasthesia or disthesia every single day possibly due to a big episode of an attack of pain on my ankles many years ago. I have spondylosis in my spine, which I have been managing by myself and some nerve root irritation on the bottom left of my spine. (MRI findings) I now have pains in both knees (inner) and nearly always at night for some reason. My left leg hurts in my bottom and travels down my left leg now. I have days when I have random pains nearly everywhere, as if my nervous system is firing up or something else.
Anyway I am now at the stage where I have had blood tests. They have come back 'more or less normal or negative' I can't remember what my doctor said. He was very good at listening today though and is sending a referral to see a Rheumatologist at Glen clwyd hospital again. I did see one in 2011 a Mr Williams and I liked him a lot. He ruled out RA due to clear blood tests and Im sure we did not discuss Psoriasis.
My GP will be telling them of my history, which goes way back. I told him today that at the age of 52 it;s about time I knew what was wrong with me especially when I try so hard to look after myself. At the moment I've developed inflamation of my left heel which is very painful. I had a needle in my right heel a couple of years ago. I also have dry eye syndrome with occasional blepharitis and use false tears gel.
I have no idea if my sponylitis, if thats how you spell it. a facett joint problem in mid back. Pains all round my lower back and now going down left leg, painful knees every day now and random pains in all sorts of places at any time of day. But never any swelling apat from some redness on the inside of my left knee and a new collection of superficial veins. Also the need to apply eye gel, two bouts of plantar fascitis (can't spell it) very bad pains in feet from developing dropped arches unless I wear Sketchers Go Walk or my new summer Birkenstock and sometimes pains in elbows and fingers but they never swell. Than finally my psoriasis on my knees, elbows a bit in hair, few dots on tummy and under bust (still mild though I think) is at all connected and I have PsA ??
Sorry for all that if it's too long but too sumarise I still don't know if I have PsA or nerve pains like they thought and whether all that is connected ?
Hi Nana L. Firstly, congratulations on getting your GP to refer you to rheumatology again. It's not always easy so you've definitely ticked a box there!
I think the stage you are at is very promising - you know what you want: clarity about your health. You have started the ball rolling in the right direction.
After that ... I'm not the best person to reply to you. I don't have spinal involvement and my understanding of how PsA affects the nerves is limited to say the least! Basically I know it can .... inflammation causes swelling even if you can't see it, swollen tissues squeeze nerves ... but that's the extent of my knowledge.
A lot of things you mention do sound very PsA-ish to me though. And I think you yourself are gradually making some possible (and plausible) connections ready to run them by your rheumy when you see them. Diagnosis so often starts with everything up in the air and it's confusing. I hope someone who knows a bit more comes along soon, but I reckon you are doing all the right things.
The more I hear from you the more I think you're on the money! I completely agree about stretching and exercise .... and about being human!
A while back I met a lady in her 90s at a Tai Chi workshop, a very strong and supple woman. She told me she'd done Callanetics for years.
Nana L said:
Thanks Sybil I forgot to say that in the mean time while waiting for physio I do a lot myself but not everyday but Im human and sometimes just don't feel like but the benefit is very good. Also my doctore gave me some new medication today Naproxen and Co codamol. He gave me advice on taking them etc. I'm keen to try the Naproxen for now and hope I don't need the others. Whatever the outcome when I go to see the Rhumatologist one thing I know for sure. Stretching is so important to everyone and although I've believed in it for many years I swear by it now. When i was young I used to love callenetics which was a lady who had a curvature of the spine. Then Pallate's and now I just stretch using a whole range of stretches. The back specialist , who I didn't like commented on my good range of movement. So even though I feel dreadful sometimes, I know after 30 minutes with a gentle warm up , I can still do some quality stretching finishing with a full body stetch. half an hour later sitting on a dining room chair without a cushion, I'm back to square one ha ha but at least I know i can do it .
Hi Nana L, like Sybil I think you've got some very valid points to discuss with your rheumatologist. Definitely don't overlook to mention about your eyes to him. And I also give movement the thumbs up. I think you're doing great and will get there with your docs.
Wow, Nana, your story sure resembles mine. From the psoriasis at 19 (mine started around 22) to the plantar fasciitis (I only had it once around age 40) to the spine involvement (I had back p.t. in my mid 30s the first time and several times since). The hands, feet, knee pain on insides (that’s gone for awhile now) feeling good after movement, only to “lock up” after sitting a short time. Minimal swelling, but like Sybil said, the swelling is there–it’s subtle. I realized how much swelling I had after starting Enbrel and I look skinnier all over–without any weight loss–my shoulders, hands, legs and feet look skinnier!!! I really wish I had taken more “before” and well, I could take “after” pics now, but what would I compare them to??? I’m nearly 10 years older than you. I toughed it out as long as possible, but finally got fed up. One thing–with your back–be very careful. After I started Enbrel the stiffness in my back just disappeared (among all the other pains). I was like a new person it felt so good to be free of the curse of PsA. But 2 months following starting enbrel–BOOM–my back went out and the pain far exceeded any pain I’ve ever had before! Someone said that maybe I had overdone it, feeling so good, my back definitely had irreparable damage from PsA and whatever else over the years. Now my feet are bad, too! But, I still feel like that is damage caused from years of not treating the PsA and just letting it wreck things! So, beware–you’re on the right track seeing a rheumy. You now have support of people who are going through the same or similar symptoms. You seem to have a very positive attitude and all the exercising has helped you stay strong–that is amazing! That’s one thing I was lacking, my muscles were very weak–3 years ago I was tested on the MedX equipment and my upper back was like that of a 90-year old. From there I did a lot of p.t. and we got my back strength into the normal range. Hopefully, with keeping yourself so fit you haven’t sustained much, if any, damage and you’ll be fit as a fiddle once you get the right meds/biologic to stop the PsA symptoms and psoriasis. Good luck to you!
Good for you, NanaL! You’ve cleared one hurdle … onward and upward! When you go to the rheumatologist please consider making a list of everything that you posted here. You don’t want to forget the smallest detail, because sometimes it’s the smallest clue that nails the case. For me, a several things stand out in what you said:
your blood work is normal or negative. Many of us here (something like 50% of PsA patients) have blood work in the normal range.
heel inflammation, plantar fasciitis, falling arches. Make sure you tell the rheum this.
mild psoriasis. The severity of the psoriasis does not correlate with the severity of the arthritis
You’re close to getting to the bottom of this, NanaL! In the meanwhile, keep moving, even if it takes a little pharmaceutical help to make it possible. Glad you joined us! Hang in there, and stay in touch.
PS This Canadian moderator had to smile at your mention of rheumatology at Glan Clwyd. I know exactly where that is: my mother-in-law had severe RA, back in the days when all that could be done for RA was to consume steroids and naprosyn. She was a frequent inpatient there. Over the last decade or so of her life, she had virtually every joint in her body debrided at Glan Clwyd – shoulders, elbows, hands, hips, knees, ankles, feet. That poor woman. Finally, she died of complications from prednisone consumption. How lucky we are these days with advanced therapies which stand a great chance of arresting the disease destruction.
Don't worry, Nana L, we don't think you're complaining. Like Seenie says, we get it. I come here because these are the only people I feel understand! We are here for each other. And, even if we don't all take the same approach towards fighting PsA, we can understand the different choices people make and, I for one have learned so much through the experiences and advice from others here I honestly don't know where I'd be had I not found this group 16 months ago!
You have such a good attitude--that's admirable! And, you can be helpful to others here because you're an inspiration with your fighting spirit! I think most of us try hard to keep active and moving--before I went on Enbrel I felt like the Tin Man without his oil can. But I didn't want to stop "living". It's good to move as much as possible, but the older I got the more tired I got. It was a double-edged sword. You'll know when you get to the point where you just can't fight without meds/biologics anymore. And, don't let your fear of the biologics stop you from giving them a try.....maybe you don't have doubts about them like I did. I hated the thought of having to depend on some kind of medicine to make me feel good! Now my biggest worry is that Enbrel will stop working and I'll be in the gap before getting on a different biologic. I shudder to think of feeling that crappy ever again!
Wishing you all the luck and better health in the future--keep fighting!