Body in constant flare like symptoms....

[Perdi05]

Hi, I've had fibro since 2010, diagnosed 2011, I was managing quite well and managed to hold a part time job for 17 yrs. Unfortunately I lost my job due to pain, swelling and loss of function in my left leg, would have moment of no control, been back and forward for hospital and gp appt. I do have oesteoarthritis in my left knee, I now suffer with chronic back pain which shows degenerative disorders in L5/4 and S1. It's causing me a lot of discomfort and monility issues, Am unable to do daily tasks, bathe, clean house. Causing incontinence of bladder and bowel. Also had ibs for past 25 yrs. Have been told its something I may have to learn to live with by doctors. Has anyone else experienced a long flare longer than a year? I'm bed ridden at least 3 days a week, can't leave my house incase of accidents. Severely fatigued. Am having b12 injections and on folic acid. Not making any difference. My skin is awful, I have hyper pigmentation on face all over arms and now on legs. Just feel quite helpless. Would love the old me back, 3 years of being like this, I've had so many treatments, therapies, appointments, pain management and cbt am going through the menopause on top of it. Have gained 5 stone in weight and dont have much of an appetite so i do eat but find it difficult, i drink alot of water to try and stay hydrated, have heard many times its the meds and weight gain that has made my symptoms worse from medical professional, i still do my physio for knee and back daily at home but trying to exercise on top of fatigue and pain is exhausting. Hrt isn't helping. Sweating so much just doing the slightest thing. Swelling on joints and feel bruised all over, ligament feel like they are being stretched constantly and have bone pain and have severe fatigue on top, tests have come back with high inflammation but not RA or gout. On 14 different medications, Due more bloods today. Can anyone give me there experience on this. Many thanks 💜

[Yassytina FMA UK Volunteer]

Hello, you are certaintly going threw so much at the moment even the menopause is enough most days🙁I feel for you as many here will too, chronic fatigue/pain and having too be home more, I know this road very well🙁I am well past menopause as had an early one , not sure if it’s meds but I do feel very warm at the best of times, my trusty fan is currently on and I keep head pads in the fridge for my forehead (can get on Amazon etc) so I can alternate. I am in a bungalow so I find it quite helpful to have bed next to kitchen, it’s a place I can be quiet and get comfy rather then sit in a chair all the time . My flares are coming quite often now and last couple days , I start too fell more normal and bang they are back resulting in rest @sleep (much too my annoyance, late afternoon I try talk too a friend on the phone or my grandboys too bring some of the outside world in and what they have been up too. People who don’t have conditions won’t always realise how it makes us feel mentally when we are restricted. `the good thing is here on the forum members do and good too talk and get some advice from each other. Do you have family or friend who can come visit you at home ? `xx

[Perdi05 in reply to Yassytina]

Thank you so much for responding, like you I have fans, heat and cold ice packs, I find it more comfortable in my bedroom most days, unless weather permits so I can sit in garden, outside loo a bonus. My best friend is actually in the same situation so we make time to message and face time at least once a week. I do live with my daughter and grand daughter so I do have some conversation daily which is lovely, my 2 dogs also keep me smiling and are very loving. My partner comes over at weekends I try to be a positive person, even on worse days, although sometimes difficult. I have so much to be thankful for, just quite isolating. I became perimenopausal at 35, I'm 50 now and menopause hit me full on over 4 years ago, plus suffered with gynae issues all thru my 20s and 30s. Hope you're having a goodish day, at least the sun is out for today here. More bloods to be done later, they forgot half my tests last time and b12 booster, anxiety already kicked in about leaving house and imodium is my best friend today lol Sending gentle hugs x💜x

[Vontrap in reply to Perdi05]

Hi do you mind if I ask you are c you v on HRT? My periods finished at 51. I’m 65 now and take ugesteron? And the gel. Sorry can’t remember the names or correct spelling off hand. I have Fibro also but not as much problems as you. Perhaps you could consider HRT. My daughter talked me into taking it.

[Perdi05 in reply to Vontrap]

Hi, yes I've been on my 2nd lot of hrt for 18 months, as the first didn't agree with me. I am going to ask my gp about the gel as I still don't feel kilofem is helping on top of everything else. Thanks for your input. I appreciate it x💜x

[GWS0901]

Just a thought and maybe you're already taking it but vitamin d3 with magnesium glycinate may give you some relief. Because of IBS you probably have malabsorption and since you're home a lot you're probably not getting much sun and it's hard to get from food these days. It helped me with being extremely hot all the time and it helped a lot of the pain believe it or not. I'm very low so I take 7000iu of vitamin D3 and about 330mg of magnesium glycinate together once a day. The magnesium activates the d3. If you don't notice change right away just give it a few days so your body can catch up. Hope this helps. 🙏

[Perdi05]

Thank you, I do take high strength vitamin D as blood tests showed low amounts 5 years ago. I will look into the magnesium, thank you again 😊

[Jint71]

Empathy Perdi05, you have just described me. In a nutshell. I’ve had FM for nearly 6 years now and IBS for 12 years. I’ve just received my “urgent”pain clinic appointment for August 2024 😩. I now have a split shift sleep pattern, as I cannot manage a whole day. This reply comes with hope that we can all find respite from our symptoms and I wish you well x

[Perdi05 in reply to Jint71]

Thank you for your reply, I hope we all find some relief, so draining and frustrating. That's a long wait for your pain clinic appt. Such a huge back log on everything. I don't know if you have tried tai chi I do sitting ones from pain management on line. I can't get on my exercise bike do to pain so I'm trying that instead. Wishing you a kind day x

[Woodwalker]

Hi Perdi05

I can say for sure that the last few years, with menopause but also after Covid vaccines I have spiralled to the level you’re experiencing (I’m not anti vax just my experience).

I also had severe head pain. Tried HRT but nothing agrees and makes it worse tbh.

I was working part time for years previously and also went on to do a degree so I also know I managed well before this major flare.

All I can say is time and acceptance has helped. I stopped even trying to figure out what was going on and just said ok body do what you’ve gotta do 😳. I take supplements too for all the usual but also a very good probiotic for the IBS symptoms which really has helped. I came off of a few different tablets slowly (with Drs approval) as I felt they wasn’t making much difference and I’d rather my body found a coping mechanism. I am currently 2 and half years on from what I’d say was the start of the flare and I am only just getting to the point where I can try little things like walks and an hour of work each day. I set aside afternoons for proper rest as I find a Mediterranean siesta type day plan works much better for me.

Sorry I’ve not got much of a solution for you, but just know you’re not alone and people understand what it’s like.

[Perdi05 in reply to Woodwalker]

Thank you for such a positive message, you do feel like its all in your head. I have been thinking recently that maybe this is how it's going to be and I have to accept it, just so difficult because you feel like you are grieving for the person you were. Losing that job I had was the most difficult, I felt like I was making a real difference as I worked in a school. I just feel like I've lost my identity, everything I use to enjoy doing has become so difficult. I will get there I know but acceptance is difficult. Thank you.again 😊 x

[Cat00]

I don't get flares, some of us don't, my pain is constant albeit moving around the body to different areas. I've been this way for 30 years but nowhere as bad as you so though, I hope this is just a long flare that you will come out of soon!

[Perdi05 in reply to Cat00]

Thank you, hope your day is as comfortable as it can be x

[Meditationlover]

Hi, sorry to hear about what you are going through, I am also in constant pain, handing my notice in today, just can't cope working anymore, feeling quite sad about it. I'm also menopausal, I'm not a suitable candidate for hrt, so fan on a lot. I can really relate, I also have an hour nap everyday about 2.00pm, it helps me cope with the day a little better, I think the best thing to do is to try and accept where we are at, even though hard to do. I've just had gabapentin increased to 300mg 3 times daily, helping a bit. My husband is extremely supportive, I don't know how I would cope without him. This forum is such a great help, we all understand each other. I hope things get better for you x

[Perdi05 in reply to Meditationlover]

Aww bless you, so sorry regarding your job but we do have to put our well being first. Having a supportive partner is a blessing as so many aren't that fortunate. Acceptance is difficult I think its because I refuse to be defeated by the situation. Fortunately I was retired due to ill health so I do get a Small littpension every month, thank good I opted in for it when I started my job. Hope today goes well, well wishes coming your way x

[Meditationlover in reply to Perdi05]

Thank you so much for your kind words, I agree, it's hard to stop the feeling that we are defeated. Xx

[Perdi05 in reply to Meditationlover]

Here is you fancy a chat xx

[Meditationlover in reply to Perdi05]

I'm also here for you xxx

[RustyOBear in reply to Meditationlover]

I know this has probably come too late but your employer should try and alter things for you at work so you can continue. If you are in a union they can help you for example be medically retired so you can then claim benefits etc and how to have your national insurance stamps paid so you don’t lose out on your state pension amount later on. Good luck.

[Meditationlover in reply to RustyOBear]

Hi, I no longer work, they did reduce my hours to 12 a week, but I couldn't even do that. My boss and me cried, hardest thing I've had to do, feel like I've list a leg to be honest xxx

[Perdi05 in reply to Meditationlover]

Hardest decision to make, I feel for you, xxx

[judyb67]

Hi, I feel your pain I have had similar symptoms for the last year, I recently returned to work after 6 years of disability. After managing 9 months I am now signed off sick again with more medication. The sweats are intolerable and showering just feels like a red hot needles being poored on me. While yes exercise is supposed to help, it causes more fatigue. They increased my pregablin to help deal with the fibro symptoms while I am now waiting for a partial knee replacement- so looking forward to that not! My weight and diabetes is out of control, just know that you are not out there alone!

[Perdi05 in reply to judyb67]

Thank you 😊 x

[RustyOBear]

Well first of all Perdi, you have my profound commiserations. Fibromyalgia can be anything from mild to severe and everything in between.

I recognise both the decades of dealing with it and some of the symptoms.

Are you in UK or USA? I have noticed those in the States seem to be prescribed huge amounts and varieties of drugs, and I can’t help thinking some symptoms then stem not from the health problems but interactions and side effects of the drugs?

There is no doubt that even lowering your weight by ten per cent could have significantly positive effects on pain as pressure on the joints is reduced and certainly help with menopause symptoms.

A referral to a dietician may be useful to get you enjoying a nourishing diet that will naturally help your body shed some weight. If you get one who is well up on IBS this could also be tackled.

It sounds like the medics are trying to ascertain why you have high inflammation is that right?

I think a complete review of your medications is a must.

As for the incontinence, this is miserable and need to identify if there is a physical reason for it that treatment can help which may be physical therapy and exercises.

In the UK you can be referred to a bladder and bowel clinic.

I imagine with the hrt you need to trial it and keep reviewing until you have the best fit for you?

I hope you have sympathetic family and friends around to help boost you up?

In the UK you can refer yourself to a service called IAPT who offer mental health support including courses on chronic pain, chronic health problems, anxiety and depression etc.

Hope things turn round for you soon.

[Perdi05 in reply to RustyOBear]

Hi thank you so much for your reply, am in the UK, everything has been slow going since pandemic and health service is under alot of pressure. I lost 3 stone in weight before I am where I am now, I was still suffering with alot but pushed thru every day until I had sick days or holidays, illness like covid, upper respiratory infections common cold always knocked me off my perch, I also was dealing with a lot of gynae issues on top, you name it I've tried it. The weight gradually went back on, sleeping difficulties, stress of worrying about family and money plus I could lose my then job. Due to my conditions. I do get financial support, re benefits. I have no family other than my 2 kids and grandkids. My partner is wonderful but I don't live with him. I've had many surgery's for gynae issues, which is why I now suffer with incontinence, as they couldn't remove my only ovary as it stuck to my pelvic wall & part of my bowl. I've tried the special diet for ibs sufferers I couldn't eat half the food as it caused me discomfort, I'm currently being tested for other issues. Pain management has helped with meditation, food diaries, drs have been harsh, I've cried I've got angry. I now have a lovely gp who is great with muskoskeletol conditions. I have a narrowing of S1 nerve, a bulge in the L5/4 I injured my back in my late 20s. Child birth also takes a toll on our bodies when we get to a certain age. I've spoken to nurses and occupational therapist. They all say everybody is different, yes I would love be 10 stone lighter. I know I'm over weight heavily but the lack of malabsorption not retaining food after eating and I'm still piling on the pounds. I thought my acruiciate ligament rupture in 2007 was the cause of all my trouble but the pain clinic pointed out i have been suffering with pain since my gynae issues, endeometriosis polycystic ovaries. Over half my life I've had chronic pain but just took medication & lived with it. Now it seems it has all caught up with me. It's so great to hear every one's story through this forum, hearing about your challenges and your triumphs. Thank you for your positivity, it always helps to try and hear others advice and maybe remedy that have worked for that particular person. Hope your day is kind to you x.

[LhasaMomma]

Not sure how to send you a private message .....

[Perdi05 in reply to LhasaMomma]

Click on my name it comes up with option 😊

[Bertiemum]

I do feel for you, and everything you are going through. When I read about other people’s suffering it puts mine into perspective. At the moment the only symptoms I have are hot, burning feet and legs with pins and needles, and very sore eyes, which are nothing compared to what you are having to cope with. Stay strong!❤️

[Perdi05]

Bertiemum May i suggest ,Magnesium foot or bath salts in a bowl of warm water it helps my burning feet, then apply some peppermint foot lotion. I find my feet start drying out and cracking badly if I don't moisturise especially in change of weather, thank you for your kind words 💜

[Winter_night]

I don’t have any advice to offer specifically, but I just wanted to say that I think you’re doing amazingly well to have carried on working and coping as long as you did. I’m glad to hear you’re receiving benefits as the impact on your day to day really comes across. I dip in and out of this group and otyers, sometimes to offer advice, sometimes to seek advice and sometimes just to feel connected to others going through the same. It’s been a real source of support to me over the last while, almost 3 years, and I’ve learned a huge amount from others… people are very generous with sharing their experiences. Wishing you a comfortable weekend.

[Perdi05 in reply to Winter_night]

Aww thank you so much, I have to remind myself on occassion that even on the worst of days I manage to some how survive it I shouldn't be so hard on myself but sometimes it's so frustrating but I give myself a good talking too and continue my journey, this group has been so welcoming and like you I am amazed by the support and advice and the amazing people in it. Again thank you! Your words mean alot 💜