Help. Tendonitis everywhere.

[MrsMarigold]

Hi everyone. About 18 months ago I had failed rotator cuff surgery. It failed so had reverse shoulder surgery. 6 months out from it and not sure this will heal. Will have MRI within the month. Without much explanation because I have none, I’ve had my pelvis, lower spine hips and other shoulder MRI’ed. DX: each area has tendonitis. Hamstring damage in right leg.

The pain to walk is frightening. I’ve had no huge trauma. My rheumatologist does not have this information yet but last appointment 6 weeks ago advised me to begin benlysta. Currently I take hydroxy and slowly phasing out my low dose prednisone. Never went above 5 mg and last 8 years it’s either 3.5 or 4 mg. Been on 3 mg for about 8 weeks. My doctors have told me my prednisone dose has nothing to do with these inflamed muscles and tissues. I know physical therapy helps. Until it became too cold to heat my pool, I did gentle moves in the pool. I really don’t know what to do. How to find a good physical therapist. I’ve been hurt before by athletic types that have a pace and structure but it’s not for me. What is wrong with me? I’m falling apart limb by limb. Is there any way to defer this? Is Benlysta the answer? Thx for any answers

MM

[Tonkie]

hi, I just wanted to give you some solidarity. I also suffer with tendinitis and tensonyvitis everywhere. My legs are the worst, I’ve had one tendon operated on but it reverted straight back. I was supposed to have the other last week but it’s a 3 month recovery and with 3 kids it’s too difficult.

I was given some medication they give to people with cerebral palsy/MS for tight muscles. I haven’t given it a good go yet as I found it made me dizzy. I’ll try and find the name of it?

Last year I was swimming regularly and it’s the only exercise I can do. I feel like a different person in the water. Wishing you all the luck and I’m sorry you’re feeling so rubbish too x

[MrsMarigold in reply to Tonkie]

Thank you for your lovely reply. I’m a grandmother now but I have three children and was an undiagnosed lupus mother. I really understand how difficult it is to juggle all the balls of life with lupus. I read your post and was going to answer you today. If you have a caring partner and people in your life that can help, guilt free, it’s a God send. I missed many of my kids’ soccer matches for years. Volunteering for one small project a year was the most I could do. Looking back, I focused on the one thing I did very well for them: baking. They have fond memories of my cookies, pies, bread. It was something for them to look forward to after a long day. My husband is the best cook so it was win/win.

Im grateful to your reply and also curious how do they operate on a tendon? I’m feeling as though I need super glue. If I were to continue in this way I’d need several more surgeries and I don’t think I can do it. I know I can not. If you find the name of the medication, that would be great. The last 6 months I’m taking “cutting edge “ supplements with collagen to help boost repair of my muscles and tendons. The package of them was curated from surgeons who specialize in sports injuries.

Thx again and remember a nap is a girl’s best friend😊MM

Hope in sunrise at the farm

[Tonkie in reply to MrsMarigold]

Hello! Thank you for your lovely reply! It has certainly made me feel better. I’ve felt like such a lousy mother and partner lately. I’m glad you found something you could share with your family. It’s inspired me to concentrate my energy on what I can do for them more instead of grieving what I can’t.

They lengthened my tendon. I had undiagnosed chronic tendinitis for 20 years. I developed osteoarthritis in my toes early as a result. I think 24? On my right side they wanted to lengthen the tendon and the muscles which would have been an awful recovery and I had to decline at present.

You sound like you’re on a super concoction for your tissues - I really hope that helps with repair. The medication is called baclofen. It helps with spasms and tight muscles/tissues in cases of MS and cerebral palsy. But I saw my GP told them about my issues and they happily prescribed. Unfortunately trying to get onto my other medications has taken precedence at the moment. But I’m hoping to include that daily at some point.

The physio for these issues is the worst. I completely sympathise. They’ve told me I will have to do these exercises for the rest of my life. They’re time consuming and painful.

Yes. Naps are the best. And also baths for some temporary relief. And brownies 🤣

[MrsMarigold in reply to Tonkie]

Brownies! Yea. When they have chocolate chips and fudge frosting. 😜Thanks for reply again. Can you update me on the meds you take? My lupus went undiagnosed for probably 20-30 years. I just guess by reminiscing. People thought I was a hypochondriac.

Im happy you like the idea of concentrating on your kids in that if you can hat trick just one of your gifts and pass it on. You are sick. And not sure age of your kids but they can be helpers. Not necessary to tell everything. Have a great day!MM

[Whippet_lady]

I'm sorry I have no answers but I wanted to reply to say thank you. I thought I was on my own with constant tendon problems so I'm glad, if you can call it that, that I'm not imagining it. I've yet to broach the subject with my doctor or rheumy. They will both tell me it has nothing to do with lupus, which is why I haven't bothered so far, but it's now at the stage where I really need some help, and armed with the fact that others suffer the same problem, I feel a little more confident in trying to press my point.

Hope you get some answers and some relief.

[MrsMarigold in reply to Whippet_lady]

Hi. Your rheumatologist should be aware that lupus not only creates havoc with our skin; but all of our connective tissues. If he does not know or will not help is it time to move on? I hope you have a wonderful evening 🌼

[Whippet_lady in reply to MrsMarigold]

Oh, if only it were that simple! He only deals with the rheumatoid arthritis stuff. He's not interested in anything else and there are no other rheumatologists I can access. I'll keep badgering though.

[MrsMarigold in reply to Whippet_lady]

I’m so sorry WL. If he’s the only choice keep a journal of daily pain. Where it is and the effect it has on daily life. Give him perhaps a print out from a lupus source with the medical information on muscle inflammation. If he/she becomes put off by it, stick to your plan to get listened to and perhaps relief. Best, Mm

[purejoy in reply to Whippet_lady]

Hi Whippet_lady, I saw your conversation with MrsMarigold and couldn't help but try to offer some assistance in someway if at all possible. I hope you don't mind. This is just for your information and to do with what you wish. I was diagnosed with Lupus/Mixed Connective Tissue Disease 27 years ago. Over the years I've experienced many different inflammatory processes throughout my body some minor and some extremely serious and because it's hard to tell what is causing these symptoms, it's important to have a rheumatologist who is experienced in treating Lupus and other autoimmune conditions. I'm copying and pasting google search results that I just did for you. I don't know where you are but I search using "online Rheumatology visits in the UK. The search result looks like there are virtual visits that you might be able to get with a Rheumatologist from wherever you are. I know finances can be an issue but I thought this was worth a shot. Also Naturopathic doctors can be very helpful when it comes to autoimmune conditions. If you know anyone who goes to a naturopath and you trust their judgement, you might check their person out. I just don't want you to have to go without the proper care you need and deserve. I will put your name on my list of people I send my highest positive thoughts to and asked that everything will always work out for your highest good. Take care.

Pure Joy

AI Overview

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In the UK, if you're looking for online rheumatology clinics, you can access virtual consultations through various private healthcare providers like Circle Health, Cleveland Clinic London, and Spire Healthcare, where you can book appointments online to see a rheumatologist remotely via video call; most NHS trusts also offer remote rheumatology appointments depending on your location and condition.

[Whippet_lady in reply to purejoy]

Thank you.

[purejoy in reply to Whippet_lady]

I also wanted to add that I have applied for financial assistance from the medical clinics where I see my providers and I was surprised to get approval so what my insurance doesn't cover, the medical facilities financial assistance program picks up the rest. Have a fantastic weekend.

Wishing you all the love and Joy your heart can hold.

[Newsystem23]

I too had rotator cuff surgery approx 18 months ago. I now have the same symptoms starting in my other shoulder. I need wear cuff/support on my lower arm as well bcus i have tendinitis/tennis elbow. Food for thought. 🤔

Information found on a lupus website.

[MrsMarigold]

Hi newsystem I’m sorry you too are affected with connective tissues ligaments failing. In my case I’m so incredibly surprised as I’ve done very light exercises in our pool to keep muscles strong for many years. The bursitis in my hips is excruciating. The last round of steroid shots helped but we know they thin the ligaments so the future of killing pain that way is not viable. The inflammation as your index of information says is hard to control. I wish you the best. MM

[MEGS53]

Hi Mrs M

It sounds like you’re going through hell 🤗🤗🤗

Me too! I have widespread tendonitis dxd by several Drs over the years. You may remember I have EDS, not lupus, although I have many lupus-like symptoms

I have been in a very painful flare since last December although I’m slowly, slowly feeling somewhat better. It started with severe pain in my legs/knees, so much so that I was unable to walk. Long story short, I’ve torn the tibial tendon in my left ankle, probable tears in the meniscus of my right knee and my left knee has collected lysis fluid under the kneecap, indicating an issue with the boney structure (partial knee replacement done about 2y ago). All EDS related 🤷‍♀️🤷‍♀️🤷‍♀️

Anyway, I have appointments for steroid injections in my ankle and then possible surgery. Both my knee surgeons are perplexed, but looking at surgical intervention.

I think you’ll relate to this. Sending virtual hugs 🤗 🤗🤗🤗🤗🤗

[MrsMarigold in reply to MEGS53]

Thank you for your reply. I’m sorry it’s taken me so long to get back. I wish you great luck with the steroid shots. Yes. This is awful and painful and sometimes spirits are just low. 😟🌼🤦‍♀️Mm

[MEGS53 in reply to MrsMarigold]

Hi Mrs M

Im sorry you’re feeling so low. Chronic pain just gets to you in the end, even to a positive and robust person such as yourself. I wish I could help, I really do.

Sending lots of healing hugs in the hope they help a bit 🤗🤗🤗🤗🤗🤗🤗

[purejoy]

Hi MrsMarigold:

I just saw a note in my email that you were considering using Benlysta. I would recommend giving it a try. I will share my experience. First I had to apply for financial assistance from the drug company. I was approved so the med was of very little cost to me. During my first infusion I started to itch some. The nurse immediately stopped the infusion and gave me something to stop the reaction and after being monitored for maybe 15 minutes or so the infusion was restarted but at a little slower rate. Everything went well and I drove myself home with no problems or side effects at that time. However, within a few days I started to run a temperature of 99.8 with chills. I began to feel some anxiety. I have scared lungs already and I felt like it was a little harder for me to get the breath that I'm use to getting. I decided to discontinue the treatment. However, all of my side effects went away in a week or two and for the first time in years I had no joint pain or swelling anywhere in my body. I begged my doctor to put me back on it because I knew what to expect now and I figured that a few days of a low grade temp was worth the benefit but she said no. She was concerned about my breathing complaint. The good news is that the positive benefits of that one infusion has kept my shoulders, elbows, hands and wrist pain free since Sept 27, 2022 just ten days after that one and only infusion.

MrsMarigold. My doctor tells me that I'm a rare case. I have side effects from medications when most of her patients have none so you might not have any of the experiences I had. If you do decide to give Benlysta a try, at the first sign of any sort of reaction I would always say don't ignore what you are experiencing and bring it to the attention of the infusion nurse immediately. Whatever you decide to do, I wish you all the best now and always.

Pure Joy

[MrsMarigold in reply to purejoy]

🙏🏻 Thankyou. Very helpful and very encouraging!!!😊