Hi everyone. I hope you are having a Happy Easter 🐣🐥🐤🍫
I would like to know if any of you have experienced really severe tendon pain? For a month niw my lower legs have felt excruitiating. When I walk, stretch or bend, the tendons at the back of my knees, in my ankle and partially in my hips feel like they are popping. My movements are restricted, for instance I was unable to pick my leg up and put it in the car because each time I tried the severity of the pain made me scream. My husband has to physically manoeuvre my foot into the car, into shoes etc. No position is comfortable, and I have been totally sleep deprived.
Thankfully following a call to the Rheumatology helpline I now have a six week course of prednisalone because the GP refused to examine or treat me saying I was a complex case and above his pay grade. I went desperate for help .
I had a mass which turned out to be a cavernous haemangioma removed from my nose in February and unfortunately haemorraghed so spent four days in hospital. Almost immediately the mouth sores, headache and stiffness started but since I got home this problem in my tendons started, along with neck lumps which I suspect are enlarged glands, swelling and ulceration of my vulva and labia. I have struggled to walk, sit, stand or lie down. The pain relief is temporary and I am sleep deprived.
Although I have had mouth and basal sores previously and general joint pain and fatigue during flares I have never had a flare last four weeks or affect my tendons in this way. I asked the go coukd it be something other than an Autoimmune response. His answer was you are asking the wrong person.
I would just like to know if it is something that coukd happen again and if so any methods or treatment that has helped. Thanks
Written by
CecilyParsley
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I have had issues with tendonitis as well. Generally it was bilateral wherever it was. For me. It has been in my legs. I'm not sure what to tell you. I had bilateral tendonitis for 3 years straight, it was so hard to walk. No doctor could figure out anything that would help. MRIs and everything.
Then one day it just got better. All of a sudden I could run again. Now it's in my hips. I'm curious if anyone has a solution.
I am so sorry you have it too. It is incredibly hard to walk when your legs just will not bend and stretch. I have had issues with my fingers, curling and on my right hand I cannot place my fingers on my palm anymore. A Gastroenterologist suggested to my then Rheumatologidt that it might be CREST given my sporadic choking and telangial rashes but the Rheumatologist dismissed it out of hand.
My Orthapaedic Surgeon says my chronic leg pain is `Neuropathic pain caused by my knees being so bad, I certainly accept that I do get nerve pain but my tendons have always been an issue though nit as debilitating as they are currently.
I have tried physio , no help, Chiropractor, helped my pain in general terms, acupuncture, helped with the tightness of the thumb tendons.
I read on the fact sheets about Enthesitis so I will be asking the Rheumatologist if this is a possibility.
I don't have a solution, but I had the same thing as well. I don't know if it's Bechets that's doing this or is it a comorbid situation. But it always seems it's not the treating doctors issue: it's always someone else's issue (ie. tendonitis belongs to physiatritians, but since they're inflamed it's the rheumy, exept he doesn't do physical stuff; it has to be synovitis to be on his turf. Well prove that...)
You are spot on. I thought the Rheumatologist role was to coordinate other services. The Consultant I have now has been very good at doing so but previous ones completely dismissed other professionals input. Every Gastroscopy I get there are bleeding sores in my oesophagus. Each time they take biopsies with comments like it is thrush. Biopsies come back negative each time so I say what is it then,.shrugs 🫤
I went for another issue to the doctors and he looked at me and asked me if I’m all right. I said no. Have you been to a doctor? Oh have I ever! What did they say the plan was? There is no plan. All labs come out dandy so can’t do anything until I really deteriorate beyond repair. No! There has to be a plan! I shall write to the doctor and ask for a consult and you have to squeeze out a plan from him! So he wrote and squeeze I shall. Let’s see how this plays out. But the fact of the matter is I’ve got nothing to lose since I’ve gotten nothing out before. So I’ll give it another go and stick with the GP since I’m getting backfire from him. Two steps forward, one step back.
I had trouble with this for a long time and went to several different doctors who didn't know what to do. I finally found relief going to a podiatrist. He have me stretches and orthotics that really helped this issue.
Hi Frogge, I have been to a Podiatrist and am currently having new orthotics made as due to my knees I have worn the fleshy part of my right foot pad down trying to walk without pain. What I thought were callouses is actually bone. Perhaps it might help. I certainly hope so. Thank you for responding I am pleased you found something that helps you.
I'm sorry your going through this. I think I did have similar in my last flare up. But resolved with steroids in the short term and diet long term. I've been convinced for a long time diet is key. It is complicated and difficult to work out. Currently, if I avoid too much 'quickly broken down' carbohydrate like potatoes, rice, bread, sugar, fruit and eat plenty of veg and unprocessed or minimally processed nuts, meat, fish I do a lot better. Its taken many years to get too this point and make the changes.
I'm in relative remission. Sure enough after birthday party last week involving Colin caterpillar and pizza. Plus hot cross bun the next day I had Bechets symptoms!
I currently link it all to blood sugar. See Zoe podcasts and Glucose Goddess for further info on how and what too change.
Hi Icefire, mine was definitely my operation triggered. I am a vegetarian and eat relatively healthily, no milk, no fried foods etc. I make my own bread which is packed with grains, Pumkin seeds etc and very rarely eat any processed food. However it is Easter and I have a delicious large Easter egg and happily eat bits without any unwanted side effects. I think triggers differ for us all.
I am sorry that you experienced this sort of pain too. When I was first ill, I had such every pain in my hips that I could not sit or lie down, it then moved to my chest. Way back then no one knew what was wrong with me. My diagnosis has changed many times but my current, and best Rheumatologist is certain I have Bechets but has not ruled out Lupus too so I think I am a hybrid .
I hope that your symptoms are now much improved and that you have enjoyed Easter. Thank you so much for your response.
I have had this, the worst was when it flared up in my hips, my doctor injected the inflamed areas with a steroid a couple of times and that cleared it up.
Thank you Lettie. This is my fourth day of steroids and I am walking a little less stiffly. I have two really bad knees, no Cartledge on either so bone on bone, with one cracked patella and one lose patella due to frequent falls so I never walk naturally but currently I make robots look graceful 😂
I have lots if fresh peppers, oranges and strawberries a day as a vegetarian so vitamin C should not be a problem but thank you I did not know that a lack of it affected the tendons
I have suffered with this for years Rhuemy sent me to Orthopaedic surgeons to see if they could do anything , I had to wear splints for achilles tendonitis in both legs , I've had severe tendonitis in both elbows and shoulder joints , plantar faciitis both feet......I've had more Physiotherapy than I care to remember and it did nothing ,I've had laser treatment, Ultrasound treatment, none of it worked
Thankfully It started to ease when I started the Methotrexate and Infliximab infusions which have made a big difference......the micro tears in tendons and ligaments can be excruciating pain and totally debilitating so you have my sympathy.
Hi Kev, I am so sorry that you have suffered so much. Arthritis and unstable posture has caused me to gain weight which exacerbates issues. Lije you physio just did not help me but the Chiropractor did. I started to exercise again and lost 7 stone in two years but then my knee buckled and I fell through the coffee table, then face planted in the garden,tearing my hamstring. The orthopaedic consultant said total rest. Worst advice ever my muscles and tendons were so tight I had 23 falls in six months. Back to physio, then to pulmonary rehab. Weight started coming off again and I fell and tore my meniscus. I have torn both Achilles tendons and like you have suffered with plantar fasciitis.
I wonder why we seem to be so prone to these issues? Can I ask did you have these issues before you became ill?
I am so pleased to hear there has been an improvement for you. It really is like a hidden illness within a hidden illness. Thank you so much for responding
No I didn't suffer with these problems before I was ill, I was originally diagnosed with ulcerated colitis in my 20s for which I had a total colectomy and a stoma hor 18 months before having a pouch formed...since I had the pouch surgery my immune system went mad ,regular mouth and pouch ulcers ,autoimmune heamolytic anemia where my body was attacking my own blood ,I've had around 12 DVTs which have affected both legs requiring a venal byepass .then the joint and tendon problems really started, at the moment my eyes are the big problem having suffered a TIA in each eye ,countless episodes of uveitis, scleritis and a detached retina
At the moment I'm recovering from my second cataract surgery 2 weeks ago .
I've been diagnosed with Behcets the last 10 years and now I'm on the right meds it has settled things gown bar the ongoing eye problems.
Oh God you have been through so much Kev. I am really sorry. Pleased to hear that you are improving in other areas but hope that the eye issues improve too. My own issues started following a hysterectomy . Odd things that I shrugged off and moved on then suddenly a sledgehammer hit me and life changed forever. I really do not think there is much support for people when their health is chronic and ongoing. Take care
Thanks and I hope you get the answers and treatment to your ongoing problems , as you say it really feels like an uphill battle sometimes dealing with this chronic illness.
I find this topic quite interesting as some of you may have seen me posting about various health maladies. I have some form of Enthesitis which is often excruciatingly painful. Some of the symptoms described here could be attributed to other auto immune conditions. ankylosing spondyloarthritis is what I have been dx'ed with. This can cause hip issues, feet/ankle issues, back issues, elbow, chest, shoulder, knee, IBD gastro issues can accompany this and sometimes mental fog... I seem to have hit the lucky jackpot as I have all of the above to a degree. Methotrexate is one treatment for this condition and in extreme cases (such as mine) combo humira and metho are given. It did not help me for some reason. Flares are similar to behcets. You get symptoms and if you are lucky they go away. My pain would come and go then return permanently in some areas such as my chest and elbows. Ive also had mini flares for a few days where I could not walk easily on my feet due to the pain.
There is research and theories that auto immune issues are tied to bacteria. A theory is diet low in sugars starves the bacteria and makes them somewhat inactive, making your health better overall. I wish I could find a doc to write me a script for the strongest anti bacteria available.
If you are finding yourself with symptoms that are no longer part of the accepted bechets type symptoms, you may look at another condition and have your meds switched or amended.
Thank you Dan, I feel for you. The AI condition is so complex, I was diagnosed with Lupus first then Bechets, then everything seemed to fall apart, Underactive Thyroid, High BP, Pernicious Anaemia, Hemiplegic Migraine, Neutropenia , foliate, iron , vitamin D and B12 deficiencies, arthritis, Dysphagia, insomnia,,and wide spread pain with nasal, oral and genital ulceration, balance difficulties, falls etc.Over the years more symptoms come and flares vary. Rheumatologists change their diagnosis. My current Rheumatologist says definitely Bechets due to vascular bleeds mostly from my nose plus all my other symptoms,but does nit rule out Lupus either. Whatever the label they are a debilitating amount of issues. I hope you find copious amounts of anti bacterial drugs if that is what helps you. Thank you for responding, good luck to you too
I agree it us a trade off of addiction, side effects etc. I had a very nasty reaction to two my Pain Specialist put me on. I had Seratonin Syndrone and put off going to the Doctor until I was sweating profusely, shaking, high heart rate and BP, with gastric problems. They immediately prescribed morphine which brought my heart rate and BP down within 2 hours but it demonstrates what an adverse affect these drugs can have on your body.
had this severely before the high dose steroids and in elbows and thumbs and interestingly swelling lumps around neck and mouth ulcers and extreme stiffness. Obviously I still have no answers to any of it ,and since steroids I get all this but less severely so steroids helped not cured. My answers are 'it's strange' or we dont know. I recently see a rheumatologist who was half hour late after sitting listening to him on phone argue about getting his work visa sorted, first asked to touch my tender points 😂😡 said my skin rashes were NOT fibromyalgia but had no answer, said I need a biopsy when they are there which I said I have tried doing for 6 years, I asked why I cant open my fingers and move my toes of own accord and he said its probably soft tissue problem. He then said I see no rheumatological problem so HELL whose problem is it other than my own. I am at wits end.Ent told me they see my problems but have no answer so meditation might help (forget referrals or tests to anyone who might know)
I hope you find help Cecily , you've been through lots, will the rheumy be seeing you after steroids though I think they should see you before too 🤷♀️ I hope the steroids help 🙏🤗xx
Hi Stiff, we both seem to be constantly looking for answers and I wonder why the hell there is not a thorough screening on initial presentation to rule in or out conditions and symptoms that go hand in hand with the diseases.
Each symptom seems to be viewed in isolation, no dots are joined, it waters down possible diagnoses and rarely is there effective consultation. It makes me angry, frustrated and desperately sad. My current Rheumatologist is just fabulous but as I have only seen him three times and talked to him every six months through COVID I have approached him with the one issue per appointment attitude as other Rheumatologists have lost interest or rolled their eyes when presented with a myriad of symptoms. I think it is time to woman up and spill my truth about everything that hurts, burns, stops me walking, keeps me awake.If he is as good as I think he is maybe he can find an explanation for my pain, stiffness, clumsiness, fatigue, rashes, ulcers, choking, incontinence. Maybe they are all connected after all? I have spent many, many hours sat in waiting rooms, having tests, only to be told it isn’t what I have been tested for. Hours in physio, only to fall and be stuck on the rest phase and the cycle starts again. I know that you have too. There has to be answers for us and all those like us.
The steroids have helped a little but I think not a large enough dose to really affect change. Thank you for asking. You take care xxx
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Confused...? 
Does anyone with bechets have disabling migraines where they can not read or write?
Tongue Ulcers? 
