Autoimmune Problems Anyone?

I’m 28 and I’m a teacher. I have had fibromyalgia for what seems a lot of years now. I also have Crohn’s Disease, Behcet’s Disease, Interstitial Cystitis, and Endometriosis. Is there anyone else out there would has similar problems? If so how do you deal with it and still have a spouse, job, and so semblance of a life. I have depression and anxiety from everything and when things get stressful it makes everything so much worse to the point that I feel like I can’t get out of bed. My muscles are always cramped and my legs seem to take the brunt of the pain. It feels like I want to rip the skin and tissue off of my legs to get to something that I can sooth. Rubbing my hands on the skin does little to nothing. What do your typical flares feel like. I know I can ask google that question, but I think they rarely get it right. I’m so lost on how to deal with everything. Has anyone found anything that helps other than a heating pad or hot bath? I feel like I just want to cry. But that doesn’t help anything. Opiates are starting to not help. And I’m taking Cymbalta and Lyrica. Is there any meds that you have tried that help better? I need help… I’m new to this support group so please let me know if there are resources that I can use. Have a great night everyone.

Lorraine Kelly

Hi I have flare ups and believe me they are not nice. For my skin which is red and burning I use double base cream prescribed by the doctor. I have throws which I comfort myself with even in summer nights. Also my old favorite hot water bottle. I have just started taking pregabalin in the last few weeks, and they have helped. However, last week I had a trapped nerve, the doctor said I could take naproxen as well which I did not know. When my hand go in cramps, not sure if yours do, I have arthritis gloves, which I buy of ebay quite cheap. I also noticed if you google fibromyalgia aids they come up with pillows etc to help. I very much sympathise with you as unless you experience this people have no idea. Take care xxx

Hi again, just thinking your depression and anxiety, I can totally understand where you are coming from. Every day things even boiling a kettle and pouring it seems such an effort. I found I had to force myself to talk to people. So, I thought I will take one task at a time, and thought I would talk to myself, saying (right now you need to do this) then focus on one thing at a time. Obviously with you being a teacher, this would be more difficult. Pregabalin at the minute is helping my anxiety, also I seem to be getting more hours sleep (just wake up twice, instead of four times)
I really do hope you get some help xxx

Hello Lorraine, I do have a lot of leg pain just like you do. I’m taking Lyrica and Tramodal and as of this week Hydrocodone on the really bad days. But yes it really just takes the edge off. Never totally taking away the pain. And no I had to stop working. I was a mental health counselor and I stopped working in 2003. I have good and bad days. I also was a widow when I found out I had fibromyalgia. And after years I remarried and my hubby knew I was ill when he married me. So yes you can find love and have a somewhat normal life on some days. I pray that something I said was a little help. I’m here if you want to ask questions. Will do my best to answer. Have a blessed and fantastic holiday weekend!

Shirley :revolving_hearts:

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Hi kelly im sad eyes new to the group . While reading your post i thought i was reading my feelings on paper.

i know the way you feel everyday im also on the same meds and work fulltime
im considering medical leave because of the stress always get flares . i have not found medicine that help i take muscle relaxers Balcofen to sleep so have some flexibly in the morning. Prayers on the way for you my love feel better .

Hi was it hard to stop workimg im also thinking about it.
worried about the expenses and how long will it take me to get disability benefits.

Thanks. I hope so too. Being a teacher and having these problems is sometimes ridiculously hard. The kids want a teacher that is happy all the time. And because of the pain I’m just not. Most days I have a 5 out of 10 pain every day. Some days are better and some days are MUCH worse. I just feel stuck. Having all of this pain has turned me synical and the Half empty kind of person and I don’t know how to get back to that happy person. This disease has changed me so much. I’m getting fed up with the all muscLe tightness and pain. How do your use the hot water bottle?

Hello yes it can take a long time without a lawyer.

Lorraine, I have had Fibromyalgia for 25 years and I have been on very drug that is supposed to be for Fibromyalgia. I can’t take any of them because of the side effects that I had to them. I had a really wonderful doctor treating me for around 20 years. He believed in Fibromyalgia because he had it too. He would read articles that I found plus he was doing research himself. Unfortunately, he developed cancer and retired in 2015 so now I have to go to a pain clinic to get my prescriptions. The only good thing about the pain clinic is that sent me to have a lot of tests before they would treat me. They found that I have fractures in my spine, degenerative joint disease, scoliosis, sciatica and I also have a rare condition where I don’t produce cortisol so I have to take prednisone daily. But, after going through all of this has taught me that you can’t blame everything on Fibromyalgia. For my pain I use Fentanyl patches along with alternating between Lortab and diclofenac for breakthrough pain for my muscles I take flexeril. The flexeril works pretty well. I asked them at the pain clinic if there was anything else that I could try for muscle pain but they told me that I have tried them all except for one. There is another website for Fibromyalgia and it’s called My Fibro Team also there are some message boards on Facebook. I hope that you had a good night.

ah omg! i’m 25, I have manic bipolar, anxiety, behcets, lymes, and fibro. I felt so alone until I saw this post. I’m new to this, and am trying to find ways to cope with all of it as well. Essential oils and CBD oil have been mostly…somewhat… helpful for me topically and also helps me sleep, I just put some essential oils in a diffuser/bath with epsom salt. I refuse to take any opiates (clean 5 years this year) so I’ve been trying a LOT of holistic stuff. I started getting deep tissue massages every other week. I found a pain management massage therapist that works with me and my pain. I got a knee pillow from amazon because i’m a side sleeper and my knees hate me for it. I started some vitamin supplements, and have been trying to cut back on junk food, dairy, etc. I’ve even tried a lil witch craft (to no avail, I’ve watched the Craft one too many times). Sometimes I feel like all of this is for nothing, because I never know what pain is from what issue. Do I have what I like to call “Bambi” knees because of the behçet’s right now, or is it the Lymes or Fibro? Is the fact I can never stay awake from the Fibro or Lymes? Do I feel like an idiot because of brain fog because of any of the three things going on with me? It’s a constant guessing game at home. My leg pain is usually the worst as well. There are days where I seriously feel like I need a wheelchair, or other days where I just can’t even get myself out of bed. I get ulcers from the Behcets, like 30+ in my mouth at a time which make me not be able to eat for days, which lands me in the hospital every time. I am angry too. I’m angry and empty, and try and cope in healthy ways (therapy, meditation) but sometimes, it just doesn’t feel like there’s ever going to be an end to any of this… and I guess there’s not. I think that’s where I’m having my issues accepting that. My doctor luckily is very thorough and helpful, but it’s taking more time because we have to work on one issue at a time. The Lymes will luckily (hopefully) go away after 30 days of double antibiotics, and she put me on colchicine for the behcets for now, and gave me a prescription strength anti inflammatory, but doesn’t want to start me on medicine for the fibro or any other medicine for the Behcets until I’m finished with the antibiotics. SO I’m currently in a very painful limbo stage. Also, I feel like being young, there’s pressure to keep up with everyone around me, which doesn’t help with my head and creates more stress on myself, which causes more flare ups, and well, you know the cycle. I’m sorry you’re going through this, I know it’s not easy. If you ever need anything, or an ear to listen my inbox is open!

gentle hugs,