My hubby and I have been very worried about how bad my mobility has got in the last year. There has been a marked decline but the pain in my spine and joints have become horrendous. I now have to use an electric chair to get about and have had to order a wheelchair access vehicle.
I received a letter from the Rheumatology dept at our local hospital last week for an appt for the 26th July. I didn’t have a clue what for so I assumed it was for a check after my MRI on my spine.
I had my regular bloods taken at the GP last Thursday and I looked on the NHS app for the results. Unbeknown to me my GP snuck in an extra blood test in May and the results showed positive ANA (antineucleotic antibodies is what I think this stands for, it’s when the body attacks itself) and it also showed positive for Rheumatoid Arthritis. Now I know why I was referred.
I have been on at my doctor for years about the pain. I was actually thinking it was the Hydroxy that was causing the joint pain but I have gotten so bad in the last year.
As bad as it sounds I am so relieved that I have a name for it now, that I don’t have to keep thinking up reasons why but never being sure.
I am really annoyed that my doctor never phoned about my results and explain why I was being referred to rheumatology but I guess that the days of dace to face to discuss test results are over, well it seems that way.
My poor old body has been through so much since 2009. I am 59 but feel 80.
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jillydabrat
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What a hard time you have had and so brave...really hope you can get the help you need and thankful you will have an appointment soon.
My problems are as nothing compared with yours...
But will just mention that the rheumatologist I saw said he woud not be surprised if my pain is food related...so just might be worth your keeping a diary to see if your immobility and pain are worse after certain foods...mine certains far worse if have any sugar and now suspect all dairy as well...I have ET but all drugs had such bad effect, had to give up the lot...just keep having strokes, though, but thakfully mild ones, but two have affected eyes which is a worry
Often think about you...lost touch, as could't keep up with anything really, due to the strokes and also am full time 24/7 carer to v frail husband. Dn't worry if I go quiet again, but won't forget you and do pray things will improve.
So sorry to hear of your very real problems. You’ve got it really hard, same as Jill. I often think to myself when I feel bad I wish I could throw all the medication away. I have ET too so know strokes are the risk. I’m also in my 80’s so even more vulnerable. I do hope you’re managing to cope and life is so unfair with your husband needing care too. Take care and keep as well as possible. Kind regards, Fran xx
Hello my lovely. Never mind me, you seem to be having things far worse plus looking after your husband as well as dealing with your strokes. Just keep looking after yourself as best as you can and the lovely husband you have. I know you are out there and I will be thinking about you both hun. Take care xxxx
Hey my friend. Sorry to hear about the new diagnosis, but perhaps it will allow for some solutions. Hopefully the rheumatologist will have some familiarity with MPNs and the role of inflammation that results from deregulation of the JAK-STAT pathway. I would not assume this is so, however, and would suggest making sure you are prepped to discuss it and require collaboration with your MPN Specialist.
Thanks hun, I will be telling him everything. Luckily my haematologist brought my bone density scan forward from the 5 year recommended as it showed borderline osteoporosis so with all the pain I have been getting in my spine she bought it forward to a week before I see the rheumatologist so maybe this will flag something as well. I think being the youngest in the family I got all the crappy genes! Bit nervous about the consult but I need to be prepared. Thanks my friend x
So sorry to hear what you are going through. I don’t know if you read my posts, but about 2 months ago, I developed unbearable pain in my lower back and my right leg. I was unable to walk for a week and a half. I had a c-scan, an x-ray and nothing showed up. My partner had to take me in a wheelchair back and forth to to hospital and doctors. My platelets went over a million for the first time so my hematologist did an ultrasound of my leg to see if I had a blood clot. It wasn’t until she ordered an MRI of my spine, that they found I had a herniated disc. The pain subsided eventually but my legs were so weak, that I was using a walker to get around. I’ve been in physical therapy and I feel so much better. I’m walking and driving on my own now and feel like a new person. I really hope this rheumatologist can bring you some relief and that you start feeling better soon.
Thanks hun. I had an MRI a couple of months ago and it showed quite a few herniated discs in the c-spine area. It’s the spine pain that is crippling me. I only have to stand for a minute or two and it feels like someone has stuck a red hot knife into my back. I have problem with my knees and hands. At night I have to sit up just about every hour to try and relieve the pain in my spine. I am always checking the clock to space out my paracetamol even though I am on loads of pain killers. My hubby often wakes up to find me sitting on the edge of the bed. I would do anything for a full nights sleep.
Sorry, Jill, but I just saw this. It sounds like you are going through a terrible time. In the US, we would usually see an orthopedic specialist for spine pain. I don’t know if you are a candidate, but maybe you should consider surgery. Has anyone mentioned that? Noone should have to live with that kind of pain. I feel so sad for you. What about a heating pad? My partner fractured his vertebrae a few years ago, and every night he uses one before bedtime. He also does stretching exercises every night. One more thing; my doctor told me that drinking lots of water helps because our bones literally dry up when we get older and hydration helps keep the sponginess in our bones. You have so much to deal with. I hope you find relief soon. Sending hugs.
Hi Cindy, thanks for your lovely post. I had an MRI which showed a number of bulging discs but not enough to risk surgery and none of the discs were impinging on the spinal cord. I am really nervous when it comes to my spine. My friends husband went in to have disc surgery on his neck an came out of hospital months later paralysed from the neck down, not being able to do anything for himself.Its not just my spine that is painful though. When I was diagnosed with PV I had been going to the doctors for months with dizziness, brain fog, lack of sensation at the bottom of my feet and very painful joint pain. Every morning I felt I had dug the garden over all day. Nothing helps. I have tried heat, cold, tens machine, lots and lots of pain drugs but it won't go away and I am as stiff as a board from sitting just a short time.
3 years ago my haematologist sent me for a bone density scan because I kept complaining of the pain. I was found to be borderline Osteoporosis, this at the age of 56. It was recommended I had another test in 5 years time but my haematologist has brought it forward. Thankfully I am going on Monday with an appointment with a rheumatologist the following Monday. I am hoping someone can give me some answers.
Hi, Jill. I live in pain, as well, but it certainly doesn’t compare to what you are going through. I have fibromyalgia, diagnosed in my 30’s, arthritis since my 40’s, and now I think I’m experiencing some bone pain from my MF. Physical therapy has helped me many times over the years. I’m praying you find some answers and relief soon. 🙏🏼🙏🏼🙏🏼
I wonder if it’s Rheumatoid factor you have tested positive for rather than Rheumatoid Arthritis? If your GP suspects an autoimmune condition he/she generally check for ANA, RF and CRP.
It sounds as though there’s definitely something autoimmune going on, but it can be quite complex to get an accurate diagnosis so quickly. For instance, Lupus and RA can both show positive for ANA and RF. I’m not sure about other autoimmune conditions.
At least you haven’t got too long to wait to see the Rheumatologist who will evaluate your symptoms and blood results. You may get a diagnosis there and then, or you may be monitored for awhile before a confident diagnosis can be given.
It’s really awful to be in so much pain, and the pain of RA is really something else. My hubby has RA and was in significant pain for at least a year before he finally tested positive for RF and only then was he referred to a Rheumatologist.
I have tested positive for ANA 3 times, the first time when I got vasculitis. The blood test this time is positive ANA as well. The last year has been the worst. The pain has been debilitating, especially when I first wake up. Sometimes I don’t know how to put one foot in front of the other. After a shower I have to sit on the loo to dry myself to ease the pressure on my back. It’s not been pleasurable that’s for sure and I am bricking it wondering what the rest of my life is going to be like. I have gone downhill so fast in the last year that it’s frightening.
I’m sure the Rheumatologist will get to the bottom of what’s driving the inflammation.
No one should have to deal with the level of pain you’re describing. Paracetamol doesn’t touch this type of pain. The Rheumy will be able to at least prescribe drugs to control the inflammation/pain. In the short term, it maybe a course of steroids to get on top of the inflammation.
If you are diagnosed with RA or another autoimmune disease there are many drugs such as methotrexate, biological drugs even Jak inhibitors which can control/halt disease progression.
You’ve had a very tough year. I wish you well with your consultation Please keep us updated.
Hi luv, I have read about the anti-inflammatory drugs but I can’t have these. I had a gastric bypass and the first thing you are told is no anti-inflammatory drugs or aspirin as they can burn a hole in the tiny stomach and dissolve the staples they use so I hope something can be found to help.
Jill, there are numerous drugs to suppress the over active immune system. Hopefully, when you have a definitive diagnosis one of them will be suitable for you. Xx
My partner got me a shower chair when I had the herniated disc problem and couldn’t stand. He also feels that since I’m often dizzy and lightheaded in the morning that eventually I’m going to need it all the time. I have never actually used the shower chair, But, like you, I always gave to sit down after my shower because sometimes I feel like I’m going to pass out.
My husband has been using biologics for his reactive arthritis for the past 30 years, he's 70 now. They have been miraculous in how they reduced his symptoms. So, don't be reluctant to try these if your rheumatologist recommends them.
Oh Jilly so sorry to hear about your rheumatoid Arthritis, you have been through so much this last year the pain must be really bad, you sound really down my friend,
Its so frustrating that our Doctors will only use the telephone or a video call, makes me feel very much alone, to top it all my Haematologist is moving to Kings, he was amazing and so helpful almost looked forward to my three monthly check ups could talk to him about anything from how I was feeling to any other problems I might have, now it will be a case of blood test done now every four months then a telephone conversation with who knows😤
Plus my GP practice are not doing face to face all a worry, changed to the practice back in January 2020 never seen a doctor, they just do not seem bothered, as you say this is the new norm.
Keep your chin up, lets hope that life gets back to some normality one day soon.
Hi Jill so sorry to hear of the terrible time you are having. I hope the rheumatologist can help you get some relief from the pain and that you can get some quality of life back soon.Karen xx
Poor you!!It’s hard when pain impacts so much, especially when sleep is disrupted.
I’m in pain too- had a few years as my hip declined, now that’s been replaced, but my hands and knees continue to hurt, especially my thumbs. Can see it’s arthritis in thumb joints as they’re getting knobbly. But my fingers are swollen and sore between the joints, hard and painful to straighten them often. I’ve been referred to rheumatology too, awaiting appointment. Am quite worried it’s my ET cytokine overacting on inflammation, as that is what my rapid hip deterioration has been put down to.
Immobility is so frustrating, upsetting and can make you feel really low. I’m thinking of you, big hug x
Just go onto to your App Store and search for the NHS app, I think there is only one. It’s a blue box with NHS in white on it. It’s very good on checking your results and tests
Hello brave one, I’m very sorry for your pain & will be remembering you in my prayers. I’m 60 yrs old & was diagnosed with an autoimmune 9 years ago with positive ANA & other correlating blood results pointing toward connective tissue disease & was having RA type pain. I was on methotrexate & prednisone first two years. I read about how nutrition impacts pain in autoimmune conditions so I began to eat gluten free & incorporated fresh greens with berries in daily smoothies. I stopped the meds because of side effects & soon my pain improved with my nutritional changes within 6 months. Mine wasn’t spine pain but hip, feet, legs, & elbows mainly. I’ve used food & supplements to treat my symptoms since then with improved mobility, no meds, & relatively no pain. Eventually I gave up caffeine, alcohol, & sugar, which definitely helped me. Gluten & sugar have the most negative affects creating pain & fatigue for me. Then last year I was diagnosed with ET-Jak2 positive. It appears there’ is relationship between chronic inflammation & MPNs. Thus far, I’m still med & relatively pain free & plan to visit a MPN specialist this fall. I see a hematologist every 3 months & rheumatologist every 8 months for monitoring. My platelets are around 600,000 & holding for now. Modifying my diet, regular exercise, learning to meditate & easy yoga have all provided me relief. Be gentle & loving toward yourself. I hope you find relief soon & I’ll be thinking of you & your hubby. Lalasings
Hey Jilly! I am glad to hear you may have a line about what is going on with the joint pain. The finding re. ANA is a clue about what is going on. I do believe you are correct that RA may be one of the things that could cause that to happen. However, there are other autoimmune diseases that can also elevate ANA. One of those is lupus. Lupus erythematosus is one of the known serious adverse effects of hydroxycarbamide. This is not to say that is what is going on, just that it should definitely be part of the differential diagnosis when you see the rheumatologist. Here are couple of relevant references.
The good news is that if HU is the culprit, switching to another medication should solve the problem. If not, then you will be able to identify an appropriate treatment plan for RA or any other condition that is evident. It is interesting to note that JAK Inhibitors are also used to treat RA. webmd.com/rheumatoid-arthri... . Perhaps it will be possible to treat both inflammatory conditions with one agent. If possible, that would be great! It will definitely be critical to have the MPN Specialist and the rheumatologist collaborate as you sort all of this out.
Please do be sure the let us know what you learn as you sort all of this out. If it is RA, what you learn could really help others who experience multiple inflammatory conditions. We truly are stronger together.
Oh wow, what you have given me is amazing and is being printed off now. I love to go armed with questions so this information is amazing. Thank you M8, as usual you are a 🌟
Just found the information on the Antiocardiolipin Antibodies it says often found with patients who have Antiphospholipid Syndrome. After my first two blood clots and 3 miscarriages my haematologist spoke to his registrar as if I wasn’t in the room and he questioned him on what the blood clots and miscarriages could be indicative and they both came up with Antiphospholipid syndrome (Hughes Syndrome). The haematologist said “No matter, we will be treating you with warfarin”. If this syndrome has any correlation to Lupus why the hell was I treated so flippantly. I tell you Hunter I am not walking away from my referral without a clear and precise of action. 3 times I have tested positive for ANA and still nothing was done. I am losing faith in my haematologist rapidly. I did a telephone consult with her two weeks ago, she will have seen the blood test results but said nothing. I can’t believe it. She knows the excruciating pain I have been in as well.
Hi Jilly. Oh my goodness how i can relate to you is remarkable. I too am 59 with polycythemia jak2. Taking hydroxycarbamide and apixaban. Diagnosed 3 years ago and still battling with gp's and consultants. I'm currently off sick from work due to debilitating fatigue and bone pain. Struggling to walk and breathless. GP putting it down to mpn and told me to speak to consultant and sent me away with painkillers. Spoken to consultant today and told it isn't down to mpn and to go back to Gp. Frustrated to say the least!! I know the feeling like you of feeling 80 so much so i may have to take the ill health route and finish work completely just to have a little quality of life. I'm so glad we have this site and people like you to make me realise I'm not alone in this battle. Take care and look forward to reading your article in the newspaper.
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Heart problems 
possible Sjögren Syndrome
What pain killers can I take when on HU? 
Spleen slightly enlarged on the upper side of normal. UPDATE on results.
