rheumatologist problem: Hi all, Havn't been on here... - NRAS

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rheumatologist problem

14penny
14penny

Hi all,

Havn't been on here for ages but I have a really swollen hand and painfull shoulders,a scan has revealed a torn tendon which I got injections for and it helped the pain but rheumatologist told me they could not stitch it back together as it was like a pulled piece of elastic and it wouldn't work has anyone had thi problem. or do you just put up with it, also hands are swollen but he says they are not bad even though they visibly are and said there was no inflammation so it was not a problem Regarding my other shoulder he did not offer a scan for this one so I presume I have to put up with it and get on with sleep disturbance which is making me into a very grumpy person which is not me at all . Would love to hear any comment from anyone

14 penny

17 Replies
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Hi penny. I had a nasty virus, Boxing Day before last and a few days later when I got up, I was in pain with my right shoulder, I couldn’t lift my arm up to wash my hair, put make up on etc, I saw my GP and he thought tendinitis and when was I seeing my rheumy, I saw the rheumy nurse in March, one of the doctors gave me a steroid injection, didn’t help much. They ordered an ultra scan, this didn’t happen till August and the letter informing me didn’t arrive. I found out late November I had a torn rotary cuff, a partial tear in my bicep, another partial tear plus a bone spur, in my case its degeneration. I was offered another injection, which I declined, referral to an orthopaedic consultant or physio, I chose physio, I have a phone call this Monday !!! All this time I have been going to chair yoga, this has really helped and I can move my arm up. I am on Gabapentin for my lumber spine, so this helps with the pain across both shoulders. I am still waiting for a back op, so this has been my priority. Speak to your doctors to see if physio would help you. All the best. X

holly-willow
holly-willow
in reply to Gigi71

Hi Gigi. Please may I ask you what your back operation is going to be and what it is for? I am asking because I have severe pain in my lower back and extending into the top of my leg. I also. Have pins and needles in my feet. I am fining it hard to straighten up and even to walk. I am having an MRI on 3rd March and a doctor mentioned surgery but my husband thinks it is too dangerous to have. Thank you in advance.

Gigi71
Gigi71
in reply to holly-willow

I have severe spinal stenosis and the vertebrae on L5 has fallen on L4 dx by MRI in October 2018. I now have to have another MRI booked for this coming Wednesday. I find difficulty in walking anywhere. I was with the pain management clinic, but they couldn’t offer me any injections. Please ask any further info, I will reply later as I’m out to lunch. X

14penny
14penny
in reply to Gigi71

Hi Gigi, I was with the pain clinic for a long long time had spine injection,morphine patches etc and they sent me to the gym which I think is where I tore my shoulder tendon now but what they have done now is to send me to St Tommys INPUT Pain Management Programme to teach some coping mechanism relaxation techniques and also impart some pain education just hope something works . I do feel sad for you as your back sounds really painfull and hope you find some relief from it.

Penny

Gigi71
Gigi71
in reply to 14penny

Hi penny. I hope this works for you. I have been discharged from the Pain Management team, because I haven’t had the op yet ,!! It took me 9 months to get to see them in the first place. I was originally given Duluxatine, however I reluctant to take it due to the fact it was also for depression, which I don’t have. The pain was so unbearable I decided I would and my GP gave me too high a dose and I was very ill. I eventually went for Gabapentin, I do get brain fog with it. i can’t take opiate drugs. I had 3 lots of physio with them, the physio has RD so was a great help. I have found such a lot of help from chair yoga, I believe this has helped my shoulder, also the meditation side and breathing, helps me relax . Everything takes so long. Let me know how you get on with the new Pain management team. All the best to you too. X

14penny
14penny
in reply to Gigi71

Thanks Gigi, I am looking forward to my appointment at Kings hoping I can look at things more positively and maybe help the pain through different eating and meditation I will let you know the outcome and also if it helps others it would be great anything that might help has to be given a try. Best wishes Penny x

Gigi71
Gigi71
in reply to 14penny

Thanks penny. I just looked it up, it does look very good. Did your GP refer you. Do you live near Kings. Sorry more questions, I feel we have to do so much research ourselves. X

14penny
14penny
in reply to Gigi71

Hi Gigi, I was referred to Kings from Pain management Clinic in hospital as they have exhausted every avenue in controlling pain from back ie; degenerative spine scoliosis osteoporosis RA torn tendon in both shoulders etc to see if they can help and I live in Bexley Kent so it is about half an hour by train away from Kings so it will be no problem getting there just hope it helps. Pennyx

Gigi71
Gigi71
in reply to 14penny

I see, thanks for advising. I just feel everything takes so long these days. I think I have to see what this operation on my back does for me first. I really do hope this works for you, it looks like they are very up to date. I will of course have to deal with my shoulders at some stage, they are caused by degeneration. I have had triple foot fusion ops on both feet, plus two further ops at The Royal National Orthopaedic Hospital in Stanmore, I feel specialist hospitals have more to offer. I only agreed to go locally as they have a specialist Neurosurgery unit in a hospital nearer to me. I was referred to the top man. I live in Essex, the hospital is in Havering. Take care penny x

holly-willow
holly-willow
in reply to Gigi71

Thank you for replying Gigi, I am desperate for relief from this awful pain and wouldn’t be at all surprised if if have something similar to you. Are you able to tell me what they will do in your operation. I know there are a lot of risks connected to having spinal surgery but I feel that I can’t cope with this for the rest of my life.

Gigi71
Gigi71
in reply to holly-willow

Hi Holly. The operation they would like to do is a L4/5 decompression, however there is a possibility of them needing to do a much more complex procedure in the form of a fixation. This involves rods attached to the spine. I agreed to the the operation last March. I had a CT scan and Flexion X-rays a month prior. I was told a 4/5 month wait. I also have the problem of osteoporosis, mainly in my hips and a top of the femur. I put so much on hold, not only managing the pain, but I was suffering from extreme fatigue. My bloods were showing a problem, but neither my GP or my rheumy picked up on it. My GP put’ to be expected’ A different doctor loaded my blood results on the screen and decided I needed further tests, I had ferritin, b12 and folate. The ferritin was low, so a course of ferrous sulphate over 3 months, put it up to acceptable levels. I already have B12 injection every 3 months and take Folic Acid. This has made a lot of difference to coping. I can’t take opiate meds so Gabapentin 1200mg, I use heat patches every day and gel. I have exercises to do from the pain management clinic. They have discharged me by the way as I haven’t had my op. I was going to be sent to a rehab course to manage the pain. I can’t apparently go till I’ve had the op, then only if needed. I understand I could have gone had I not decided on the operation. I got the name of the service manager and she is pushing me through. I am apprehensive of course. Like you I’m not sure I can go on like this. I’ve had triple foot fusions on both feet, plus the three other ops on them. My walking isn’t that great. I’ve had RD 34 years and also on long term steroids 5mg. They could be blamed for the spine problems. I am on Humira, 12 years now. I have a lot of family celebrations this year and fitting this op in is causing me more problems. It may also depend on the results of the MRI I’m having next Wednesday. I have had two pre meds !!! The first one in September ran out. I live on my own, my partner has his own property, I have a lot of family near by, so just hoping I’m doing the right thing. If it helps you can pm if you like. All the very best. X

holly-willow
holly-willow
in reply to Gigi71

Thank you for your explanation about your operation Gigi. I haven't got as far on as you have as I am just waiting now to have the MRI scan done on 3rd March. Personally, I think I have had RD since childhood but that it wasn't diagnosed, but I have always been in pain, especially in my back and hands, since I was ten years old. In those days, people didn't seem to be so knowable about health issues and doctors didn't seem to pick up on them.

I am on 5mg Prednisolone every day as a maintenance dose and I also take folic acid, plus Ferritin and Pregabalin (which is similar to Gabapentin). Apart from that I also take methotrexate and hydroxycloroquine. I also have many other health problems such as; fibromyalgia, restless legs, degenerative disc disease and curvature of the spine, and take tablets for those conditions too. I am having my big toenails removed at the end of May. I was hoping for late May (they had said it would be May) as we are going to our niece's wedding early in May and to our cousin's 70th birthday a few days before

I had a new big toe joint put in five years ago but within three years I was told it had worn out. My big toe and the one next to it have drifted right over and there is a big gap between my second and third toe.

RD is a horrible thing to live with and has so many associated illnesses as well. I can just about get around the house and often need a stick to walk with. Going out without a wheelchair or a mobility scooter is no longer possible for me.

Last November I had a shoulder joint replacement and will be having a knee replacment possibly at the end of the year. It would be nice to keep in touch, but I am not sure how to pm you from this site. Are you from the U.K? I will be thinking of you. xxx

14penny
14penny
in reply to Gigi71

Thanks Gigi, I am interested how you get on

Good Luck Penny

Hi Penny, I really feel for you. Two years ago I had a nasty fall and ruptured two tendons in my rotator cuffs in each arm. I had two injections for it but they didn’t work and the pain never stopped day or night. I had physio and my right arm improved tremendously. From not being able to lift it up it back to being almost normal.

However my left arm got much worse to the extent that I could only lift it about three inches and the pain was extreme. I was told that they couldn’t sew the tendons together as it would be like trying to sew two pieces of wet tissue and would tear again almost straight away.

Eventually last November I had a shoulder Replacement which has been wonderful. I kept being told that it would be very painful for at least two weeks after the operation, in actual fact the pain from it was nothing like as bad as before the op. I was also told that I wouldn’t be able to lift my arm up to more than shoulder level, but in actual fact I can lift it up above my head.

I wish you all the best.

Thanks for your reply holby-willow,

This has given me some hope but I am worried because my friend had a tendon repair on both shoulders and in her ankle which was repaired at different time and is really good for her and when I told her about my problem what my rheumy said saying it would not hold she said "rubbish" so I am wondering if she had a different type of op I think I might ask for a second opinion I wish you all the luck with your op as it sounds like a very good outcome for you Thanks again

Penny

I don't think your friend should have said "rubbish" to you like she did. I was told that my tendons are so very weak because of having RA and that is usually the case with it. So as you have RA it would be a completely different thing to your friend's case. I don't imagine that she has RA. However, if you feel that you want a second opinion then you are within your rights to ask for one.

Thanks Holly

It's great to talk to people on this site as they understand what it is like to have RA and obviously my friend does not which is why I am gratefull for your reply I feel really in the dark about this even doubting my rheumy but to make it worse my surgeon who was fantastic and done both my knee replacement and he done sports injuries and shoulders as well has just retired and is only doing private now so I will have to have a good search for a orthopaedic surgeon again if it goes down that root. Sounds like you had a really good outcome and I was pleased to hear that.

Penny

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