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MS

Aug 28, 2015 8:19 AM

I'm having extreme fatigue and pain. I feel so alone. Can anyone relate to this issue?

Aug 28, 2015 10:47 AM

Extreme fatigue and pain, I've had both. There are times when I just want to cut off my limbs, they hurt so much. I don't have MS though.
There are a lot of people on here, I'm sure there's someone who has the same thing.

Aug 28, 2015 11:47 AM

You know it's not even about having the same thing. I'm just in need of having someone who can relate to the limitations I have because of being so tired and in pain. I used to be so full of energy and now I can't comb my hair without getting tired. With what you're dealing with do you still have full use of your arms and hands? Do you drop things alot?

Aug 28, 2015 11:58 AM

I have good days and bad, but have healed a lot from a year ago. There are definitely limitations, especially with art for me. I can't use pencils, or most pens because they bring a ton of pain and a constant spasm that makes it hard to sleep. I couldn't walk for awhile. My dad had to dress me, brush my teeth, floss, get out pills, feed me, help me go to the restroom, just hard to accept.
Many people at my school don't believe me.
Now my arms and hands are doing a lot better, I don't need anything to help me walk. I can use my arms and wrists with some pain, but it's bearable. I take probably 60 pills, plus creams and inhalers to be okay-ish. Not normal, but close. My pain spread down, and one leg is still numb.
I'm hoping DMSO will fix it. ...

Aug 28, 2015 12:02 PM

I understand and can also relate. Although I don't have MS, I have a number of other issues and I have days where I can't move, I'm absolutely exhausted and have zero energy. Those days are hard, really hard and I often feel so alone with it. Things like even walking to the loo can feel like I'm walking in treacle (best analogy I can think of). But I try my best to focus on the fact that some days are good (I'm never a 100% but I always view days where my pain levels reduce a bit as good days) and that I will get through the flare ups. It's not nice, I know, and you do feel as though your whole life has been destroyed, but there are people who care and understand lovely. Sending you plenty of hugs xx

Aug 28, 2015 12:05 PM

Thanks that means a lot to me.

Aug 28, 2015 12:13 PM

I'm currently waiting to see the neurologist because my doc suspects it's ms, but after reading you guys post I'm not so sure it's not fibro. Does anyone know what the differences are? And what else it could possibly be.

Aug 28, 2015 1:13 PM

Hi prbrooks - I'm sorry you are going through so much pain and fatigue. Its not easy at all but we all understand what you are going through as most if not all of us here suffer from the same hardships.

I'm going to assume that since you mentioned they suspect its MS you don't have an official dx yet so I will tell you some of my story. I was tested for MS and other neurological issues about 10 years ago and then again 7-8 years ago when I started having hand pain so bad I couldn't do a lot of things and I was constantly dropping stuff. I was even put in medication for MS and seizures even tho they couldn't confirm I had MS or seizures.. not sure why I agreed to it at the time other than to say I was desperate .. it didn't help at all.

I stopped taking them after 5-6 months and started pushing my primary again .. more docs over the next few years. No one could figure it out.. finally decided it was fibro and sent me to a rheumatologist. . She figured out that I also had Rheumatoid Arthritis which was the cause of most of my problems.

The biggest problem I see is that many of the symptoms we all have cross over between different dxs so I think its really tough for the docs to figure out which one it is.

Do your hands swell? If they do fibro doesn't cause swelling (info from my rheumy) .. its not always obvious but if you feel tightness when bending fingers its probably swelling. From research I've done regarding MS I can't find swelling as a symptom related MS other than being a symptom of MS medications.

If swelling is a symptom you have with your hand pain and fatigue maybe you can request a referral from your PCP to go be evaluated by a rheumatologist as well. Even if they've done testing for autoimmune deseases. I was tested several times by my PCP but I test negative with the basic tests. They will still want u to get MS tested.

I hope they can find out whats going on for you soon!

Linda

Aug 28, 2015 3:32 PM

My cousin had MS and had a hard time walking and breathing in the climate he lived in (New York) So he moved to Florida and lived with my mom and dad. It was much easier on his breathing. MS almost made him wheel Chair bound. He couldn't gain weight and he would eat, it was almost like there was a magical wand making the food vanish lol! God rest his soul I miss him! He would also walk to one side because of what the MS did to his bones.

Aug 28, 2015 3:41 PM

**Stinking phone! I hope they find what is causing you so much pain. You have my prayer's. The title of this topic just brought back so many memories of my cousin, because even though he had MS and had a lot of pain he still went back to school got a bachelor's degree in accounting and business and loved to go on pool tournaments ( not the swimming pool lol). So don't let your disability stop you from your passion. Something I learned from him.

Aug 28, 2015 4:49 PM

Linda0000 is spot on, there is a lot of overlapping with the likes of fibro, ME, JHS, EDS and MS. Of the you will find that many people will present with similar symtpoms but they will get a different diagnosis. I think that it's all about being very thorough, if you get a good gp, rheumy, or specialist consultant, the correct diagnosis will depend largely on the quality you receive. By that I mean, sometimes when a patient presents with symptoms such as fatigue, pain etc, a consultant who is very unsympathetic could diagnose you with one thing when in fact it's something else. Because all these illnesses present very similarly, it depends on in depth investigations and whether or not the consultant is sympathetic to you. It's all about doing the right type of investigations I think. Either way, none of it's very pleasant, but we understand and that's the main thing :) xx

Aug 29, 2015 10:44 PM

I'm just so frustrated. I've been going to the doctor for ten years trying to find out what is wrong with me, but because I don't have insurance they never went any further than the basic testing. After five years I was so sick I could hardly work. So long story short I had to diagnose myself. I studied my symptoms and went and bought a glucose meter. My sugar was so high it didn't register. It just said hi. So I went to the er that night and I was diabetic. I was put on pills. At that time my weight was about 140. I started losing weight like crazy and felted worse than I did before I was diagnosed. Well, one year later I'm in the hospital 107 pounds and almost died. I needed insulin not pills. The doctor to me my body was very close to feeding off my organs for energy because all of my fat was gone. If I had a doctor who cared about people and not just money I wouldn't be going through what I'm going through now, on top of the diabetes. I keep telling docs about my pain and having trouble walking and working. Just every day things period. I started telling the docs about these issues also ten years ago and finally someone listened and believed. I'm waiting to hear from a program that's going to help out, so I can see a neurologist. I thought being diabetic was hard to deal with, but this pain is off the charts! I have the worst luck. Does anybody have 2 chronic diseases that have no cure? This sucks!!!!!!!!

Aug 29, 2015 11:04 PM

Prbrooks1973, I've been dealing with similar symptoms. My fibro symptoms started in 2008-2009, but wasn't diagnosed until 2012, following continued degenerating health after 5 in 1 surgeries to remove a pelvic mass in 2010. At that time my inflammation markers were out the wazoo. I've had 2 neck surgeries for DDD osteoarthritis and ruptures discs. So when I started doing things in 2011 the docs thought it was CTS and did surgery. But then I started walking off balance and veering into walls, having dizziness too. Multiple doctors began suspecting MS. I was sent to a neuro-psychologist because of severe forgetfulness and getting lost, and changes on a brain MRI, and that doc said I have dementia. Because symptoms have not improved I was referred to Mayo clinic for reevaluation. I'm to go through two days of testing next month. I'm hoping and praying they figure it all out! The not knowing what is causing it is upsetting and stressful. And I'm preparing myself for the worst, so if it's bad I'm not caught off guard. So yes, I understand and you are not alone. Hugs and prayers! 🙏🌼

Aug 30, 2015 12:20 AM

I will be praying for you as well.

Aug 31, 2015 10:49 AM

Thanks! Have a blessed day! 🙏🌼

Aug 31, 2015 11:03 AM

Prbrooks1973, welcome to our community. I'm so sorry you are suffering so. I have several autoimmune diseases with chronic pain for which there is no cure. I've been in agony for almost 23 years and have been through more surgeries than anyone should ever have to have. I'm so sorry you had to go through the nightmare that you are dealing with now. I will keep you in my prayers that you get to be with a doctor that can help you to quell some of that pain you have. Sending you gentle hugs and hope you find the support and information and empathy you need here with us. 💕🙏🏻🌻

Sep 01, 2015 7:14 PM

Thanks, it's really nice to be in contact with people who understand what I'm going through.

Sep 01, 2015 10:11 PM

I have experience with diagnosing myself. Many docs have basically given up, or not cared about a diagnosis. The rest have been, at best, guessing. I don't even go to my GP anymore, but technically I can't find a new doc because of really stupid insurance. So, I'm in a similar situation. I've been to Urgent Care and the ER several times each.
At the ER, often I'm simply having dehydration. They don't tell me much, except drink fluids. Water doesn't stay, but the IV fluids did seem to help.
Anyway, what diagnosis docs have suggested:
Arthritis, Carpal tunnel, CRPS, Fibro, ADHD, neuropathy, dystonias, anxiety, depression, MS
Ones I suspect: hypothyroidism, MTHFR C677T gene mutation double copy, CRPS, ADHD, absent seizures, lupus, POTS

Sep 02, 2015 6:54 AM

I've had extreme fatigue but inability to sleep. Adderall was prescribed about a year ago, low dose, just to get moving in the AM. It has increased concentration and decreased fatigue, but I'm still unable to sleep, even when I take the dose at 6am.

Sep 02, 2015 8:01 AM

I've had problems sleeping for years. I go to bed tired and wake up tired. I can take something to go to sleep and it doesn't work. I had a ruff day yesterday. First I ran into the door frame and hit my face. Then I almost fell down the stairs and after that I ran into the wall in the hallway. I had a family member ask why did you do that? OK, is it just me or is it crazy to think I did all that just because!

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