inflamed muscles and tendons

[Daddyishealing]

Does anyone have inflamed muscles and tendons with severe stiffness and can't walk ? Why and what has helped . Desperate 😞 ty warrior friends ❣️

[Deeb1764]

I had that at the start of my RA every time I stood up I had to take a deep breath and almost get my balance then in pain would walk!

My GP gave me steroids. Worth getting it checked out

[Madmusiclover]

When I got to that stage, unable to walk, I got put on a JAK thankfully; though after 5 years I’m slipping back. Get onto your rheumy/helpline. Good luck.

[HappykindaGal]

Yes and to be fair, absolutely nothing has worked (sorry!) I’m already on MTX and Benepali 😭😭😭. I just have to live with it and carry on the best I can.

[Wantplaytennis in reply to HappykindaGal]

Hi I've just had my first benepali jab.How have you got on with it?

this is my 3rd biologic.living in hope!

[HappykindaGal in reply to Wantplaytennis]

It was a life-saver for me. Worked within 2 weeks and enabled me to get off steroids at third attempt and everything was pretty good. Unfortunately now 5 years later, my disease activity is increasing and it's potentially the meds failing. But, I'm also under a huge amount of stress in my business - an employee as a thief (it's in court) and having to make redundancies. So it is potentially more to do with the stress levels than meds failing. Who knows!

I hope it works for you

[13Lab]

Yep… happens to me couple of times a year… luckily only lasts a few days….

[ruth_p]

You could try branch chained amino acids as a supplement. I recently started using it after exercise to help with my recovery post workout. They may help. However, I would contact your rheumatology team and ask for some advice. Could you have injured yourself or it might just be your medication needs tweaking.

[Daddyishealing in reply to ruth_p]

Ty I did start amino acids last night and collagen. Do you have any brands you find very god or helpful. My Rh sucks and he's just gonna wonder why I didn't star rinvoque and it's bc I get worse with every damn biologic this far and I'm scared with a dad dying of cancer

[helixhelix in reply to Daddyishealing]

I’m sorry about your Dad.

Would it help to think about it all in a wider context? Leukaemia is one of the most common cancers sadly, and overall nearly one person in two gets some form of cancer. However the long term studies show that taking Rinvoq only increases the absolute risk by a tiny amount. Less than 0.6/100 person years.

I don’t take Rinvoq but another biologic and for me the small risks are well worth it. And I do everything I can to reduce my cancer risk in other ways. So I stopped smoking, lost weight, take daily exercise, cut out all red and processed meats from my diet and eat a lot of plants and only a little of other things. All these things have been shown to reduce cancer risk by more than taking Rinvoq would increase it.

[Gottarelax]

this is how it all started for me. Suddenly I just seized up and could hardly move my arms and legs. Every position/movement was agony. I had a short course of steroids which got me about 80% back and went on MTX and sulphasalazine Once the steroids were finished it got worse again but it’s manageable at about 60% mobility. I’ve had another course of steroids since to give me another boost and am now being assessed for biologics.

[J1707- in reply to Gottarelax]

oh this is me

[Daddyishealing in reply to Gottarelax]

You still take methotrexate and sulfa? Or did you just go into remission after

[Gottarelax in reply to Daddyishealing]

I’m still on MTX and sulpha and I’m not sure whether it helps or the effect of the steroids has lasted. I’m not fully mobile with a frozen shoulder, limited hip movement and swollen knees but at least I can walk about 30 min now.

[Daddyishealing in reply to Gottarelax]

Thirty min is a dream. I'm proud of you I know what that means and how much that equates too in our world n can you walk thirty minutes a time or in a full day as fir frozen shoulder there's a huge connection btwn estrigen and p loss you may want to look into it m esp estrogen. Many many many studies price the link

[Hidden]

This is me when I have done ‘too much’. One day on, one day off works best for me. Bed rest is the only cure. Sometimes I need to lie down for several days… it depends. This damp weather doesn’t help at all, so that’s an extra factor atm.

[J1707- in reply to Hidden]

me too !

[Shadow35 in reply to Hidden]

Hi. I'm still waiting for a diagnosis but i found out that when i'm good i used to rush to try to do everything and if i push too much my energy suddenly drop and i start to get stiff everywhere. After few time i learn to stop before that level. So it's normal with arthritis? I'm taking for now nsaid and it's help to bend my finger and move my neck. When i feel tired just a little bit i stop because i don't want to have the same intensity then the last time. 2 months with difficulty to move. Tired, can't cook. Was sleeping during the lunch at school. I'm always preparing for the worst.

[Daddyishealing in reply to Shadow35]

Same. We all overdo it but this is at point I can't walk to overdo it even with pain med m I feel biologics ruined me. I wa better prior to them

[Hidden in reply to Shadow35]

Pain and fatigue are the main issues. It’s finding a drug combination that works for you. Ditto a balance between activity and rest. If you do ‘too much’ you pay the price…

[Ryka]

Yeah. Started having it ever since RA. I am on baricitinib. But still regularly get inflamed tendons in ankles, hands and wrists. Nothing helps and the rheumatologist said to take steroids for 2 days. Hot water bags helpa bit too.

[Daddyishealing in reply to Ryka]

Can you walk. They are caught btwn connective tissue diseases AS and RA I believe it's a mix but does your med work bc this all happened while on cimzia and worsened on humira . Bf I could walk a little . I'm petrified to try rinvoque or any more drugs. Would you ..well it's hard bc my dad is dying if leukemia which rinvoque causes. Currently in steroids but they are not working. Does it show up on MRI and what is happening to the nerves the nerves I'm wondering is it the nerves and tendons or the degetstinb of spine doing this and no idea how to know it gets any relief

[Ryka in reply to Daddyishealing]

That sounds terrible. I am so sorry.

When I get inflamed tendons, I do start limping heavily and leaning on walls to walk. And sometimes, a walking stick. But so far steroids help after a 2 or 3 days.

[Mmrr]

I have tenosynovitis and inflamed muscles as my biggest problem, the joints cause me less issues. Ice packs help give temporary relief.

[J1707- in reply to Mmrr]

me too . It’s taken years to be heard . I really had to push for tests .

[Mmrr in reply to J1707-]

What tests did you get? Did they show anything ?

[J1707- in reply to Mmrr]

ultrasound on my hands showed tendon thickening grade 2. MRI results were missed diagnosed so had scan on Achilles again showed tendon problems and tears and calcification. Physical exam by physio . Results tendon tightness due to inflammation in various areas including outer hips with bursitis on both . Elbows and ankles both extensive tightness with no movement. High dose of steroids reduced the inflammation and movement returned but each time the risk of permanent damage increased. I’ve just had my first RTX infusion. Apparently this drug helps with this as well as joints . Hope it works

[Mmrr in reply to J1707-]

I really do hope it works for you. You have such a lot going on too.

[Salamanca21]

Hello, yes I have. I found a steroid injection helped, and to try and stay calm! Good luck! 👍

[Daddyishealing in reply to Salamanca21]

Where steroid injection. I'm on dexamethasone 1.5 mg . It's bilateral all tendons and ligaments in legs .steroids in knees dud nothing . Where did you get the injection.

[Salamanca21 in reply to Salamanca21]

Sorry Dexomethasone worked for me. Got it at the GP's. Good luck.

[Daddyishealing in reply to Salamanca21]

What dose were you on if you dint mind me asking

[Madmusiclover]

I for one have found your replies reassuring. Why is this so little talked about? It’s always joints and fatigue. Thank you for all your replies; they has given me courage for my drug review this week.

[J1707- in reply to Madmusiclover]

I had to push for tests etc . I ended up with torn Achilles but it was ignored still until a great physio listened

[Runrig01]

I have ankylosing spondylitis, rather than RA. One of its features is that where tendons and ligaments attach to bone get inflamed, then they repair with bone rather than the tendon or ligament tissue. Both knee caps are subluxed due to the tendons shortening following inflammation. The same has happened with 2 toes on my left foot. Knee scans showed lots of areas of inflammation and calcification, same with right shoulder, and my sacroiliac joints. My SI joints are fused and the many tendons attaching there have calcified, which has shortened muscles of the thigh. My quads and hamstrings are very tight, and if I stand still, I get an intense burning of the muscles, which intensifies, till I relent anc sit down. I recently overdid it on holiday resulting in quadriceps and patella tendonitis. My left thigh quivers then buckles on me. As a result I fell in the shower 3 weeks ago and gashed my leg, which now requires twice weekly visits to the nurse to dress. I’ve had to purchase a new walking stick that quickly converts to a seat, as 3 weeks on my leg is still buckling. Wish I’d bought it years ago. Here’s a picture of it. The leg is also very weak with numbness from the shin down, but no flags for cauda equina thankfully. Hope yours settles soon

Walking stick with seat

[Shadow35 in reply to Runrig01]

Hi. I'm still waiting for a diagnosis but the doctor think it's may be spondyloarthritis. I start having intermittent pain in my foot. A podologue told me it's fasciite plantar. I'm starting to think it's can be link to my fingers that are swollen and stiff and my neck problem. This is when i'm good. When i'm really sick all my spine is stiff and i can't bend. How long it took you a diagnosis and did uour blood test came back positive? I'm scare they gonna wait to see irréversible damage to gave me a treatment. I already lose my thumb because of the incompetency of 2 doctors i would like to keep the rest of my body.

[Runrig01 in reply to Shadow35]

unfortunately my AS took over 25yrs to diagnose. I worked as a trauma nurse and every back pain episode was put down to my career as a trauma nurse. I had been attending local rheumatologist and getting nowhere, so ended up travelling 250 miles for answers. Because I was so late being diagnosed, I have fused sacroiliac joints, as well as ribs being fused with a chest expansion of only 0.8cm. I tested positive for the gene, but I’m in the 50% that never have raised inflammatory markers. I have issues with my lungs from the years of uncontrolled inflammation, as well as heart issues with the heart being enlarged also from years of uncontrolled inflammation.

It does affect my hands occasionally, but thankfully any modules or swelling has always eventually subsided. I have had plantar fasciitis as well as Achilles tendonitis, both of which are common in AS. I was diagnosed initially from X-ray of the pelvis due to the sacroiliac fusion, but did have a full spine and pelvic mri, which found many other issues, including 3 slipped discs. The one at C6-7 is pressing on the outer layer of the cord and has calcified, the other 2 in my lumbar spine are dehydrated and don’t cause much of an issue now. Hope you get answers soon 🤗

[Shadow35 in reply to Runrig01]

Oh my! I'm really sorry. I'm waiting for some mri and blood test but i'm scare that everything gonna be negative or borderline like all the test done before. A neurologist put in my file that my problem is due to psychiatric problem and it's false. I just saw a rhumathologist and i hope (i have a good feeling)that he is good and gonna see past that. He was really surprised. Thank you for your answer.

[Daddyishealing in reply to Shadow35]

Omg that's what my first rh did and now bc of as I lost ability to walk and over 20 years of being able to know what I had and treat bc the damage you are validated women are always senbas hysterical and not asvhuman

[Runrig01 in reply to Shadow35]

I got a surprise today, my rheumatologist requested a full spine and pelvic mri 2 weeks ago, and received an appointment today for this Saturday. So I can’t complain. Hopefully you hear soon about yours. It’s always great when you feel listened to. Hope you get answers soon 🤞🤗

[Daddyishealing in reply to Runrig01]

27 years I was told fibro my spine is drhetsted herniated in too many places to name and out stories are similar . Ha e you found any treatment to regain function. Also ty for your nursing service. What drugs did you try bf funding whatever is helping you is it normal to get worse in TNf blockers in ithebests such as my heart lungs legs lost most of hair but ultimately I'm more sick and in so scared bc no one dx me properly and it feels it's too late fur me any hope

[Runrig01 in reply to Daddyishealing]

I was already on steroids due to having polymyalgia, and was still getting the back and pelvic pains, so was immediately put on biologics. I’d also been taking either Diclofenac or etoricoxib nsaids, for long periods. I was lucky from my first benepali injection, I went from struggling to reaching my knees, to touching the floor. At my 3 month review all my BATH scores had reduced considerably.

I’ve had no side effects, and less infections than pre biologics. I’m having a full spine and pelvic mri on Saturday, as they are questioning if it’s less effective now, as I have weakness in left leg as well as severe pain, and all my spinal & pelvic pain has increased. Although it’s possible the leg issue may be exacerbating my other pains. I’ve been on it 6.5yrs. I’m also on MTX 25mg for the peripheral pains, which keeps them under control most of the time.

I’m certainly still better on biologics and MTX than I was prior to being on them. Even with prednisolone I was still extremely stiff. My Trust only allow you to try 2 tnfs, so slightly anxious that I may have to switch already. We are all so different in our response to meds. I’m on over 25 meds and get no side effects from any of them, so I’m very lucky.

[Daddyishealing]

Ty all . I can't believe this is happening or that I'll need a wheelchair. But I can't control the pain at all let alone get to the bathroom easily I'm so scared guys it's been seven months and progressing

[Madmusiclover in reply to Daddyishealing]

you must contact rheumatology!

[Daddyishealing in reply to Madmusiclover]

They just want to throw rinvoque at me and I have cancer in all family do you have courage or hope to share bc I've gotten worse in the two years treated and git new symptoms like hypothermisbonnhumita which to help others indinadmit helped some spine pain about thirty percent @

[Downtime]

Yes. I’m on methotrexate but I also take Brufen slow release to help with the tendon pain etc. it’s the only thing that makes a difference other than steroids which I don’t want to take long term.

[Daddyishealing in reply to Downtime]

Hmm is that an anti inflammatory burprone bc I can take the joint pain but I can't walk

[Blackberrywine]

Ouch yes! I have found that tendons popping and inflamed is often worse than joint pain for me. Stiffness is a regular feature. Some things that definately help are...exercise (once up and moving!) Swimming is good. Also I am really affected by certain foods and have to stick to a predominantly grain/sugar free diet. Might not make a difference to you, but worth a try maybe? I'm not on any meds atm as often they have made things considerably worse, but I'm highly drug sensitive.

I also take black seed oil and cod liver oil, but best to check with your doc around supplements. As I said, I don't take anything that might be contraindicated.

Hope you feel better soon.

[Daddyishealing in reply to Blackberrywine]

How does blood seed oil work in other words do you actually feel any different . The TENDINS are eirds than joints by far and I'm dx as ankylosing spondylosis

[Blackberrywine in reply to Daddyishealing]

Yes I have AS with psoriasis. Black seed oil is anti-nflammatory. It helps somewhat. On the plus side I never seem to catch anything.

[Daddyishealing in reply to Blackberrywine]

Ty I think I bought it I'll take rt now bc I'm on steroids and worn out no sleep plus dying father emotionally breaking but this connect tissue stuff started after I tried to clean seven months ago and I never reviewed just got worse . Do you have anyone natural you know if to work in my NJ via telemed or know any thing about regen med when it comes to TENDons im so desperate rt now fought since 20 ,39 too cripple to even attempt work anymore 47 now and I'm wondering about estrigen and progesterone and if either helped anyone bc I feel we need out hormones to fight but I didn't do well on estrogen low dose with pm p alone dud stop period and sved me a lot bc I have Endo and adeno but I blew up. I o longer care about that screw it I just want to walk . Maybe il write a post to see if anyone is versed in that. Also letting you know I ktice a tiny diff with vitamin c I've never taken prior but then again could just be bc it's clearing twisted colon faster . Ibd and as are closely connected acc to research so hope that info can help someone

[Mmrr]

I don't have a diagnosis of connective tissue disease, but inflammatory arthritis. An MRI scan showed tenosynovitis in my arms and feet. But no further investigations.

[Mmrr]

I don't have a diagnosis of connective tissue disease, but inflammatory arthritis. An MRI scan showed tenosynovitis in my arms and feet. But no further investigations.